As per the Social Worker today….we are still not sure if mom will be discharged to go home on Friday or not. We will keep you all posted though. We think we may just find out if we can just take her home on Friday for good without their formal approval or not. I am not sure if this will affect her insurance status or not though. We are waiting for the nurse from the Dept. of Social Services to say, “OK” to the company who will be servicing mom by providing an aide, nurse, OT and PT. That person, the DOSS nurse, was on vacation all last week.
Claudia began the morning with mom. She brought mom a roll with butter to have with her breakfast. Claudia found out that mom’s nurse had spent the morning cleaning up mom’s medical files and records so that all will be in order so that it will be easier to discharge mom.
Anthony said that he, dad, the PT and the OT all worked with mom today to practice getting in and out of the car!!!! We decided that Anthony’s car is probably the best one for mom to travel home in because it is lower to the ground compared to dad’s van. Mom did very well the first time she tried and did OK the second time and not so good at all the third time.
Anthony said that the procedure is to open the car window so that mom can grab onto the door at the point of the window similar to holding onto a bar in the bathroom or the hallway railing at the facility. Mom grabs there and pulls to a standing position from the wheelchair. Next, once she is standing, Anthony or Dad gave her verbal cues to move her feet (which foot to move and where). Next, mom needs to do the pivot to turn so she can sit on the seat of the car. The hardest part of the process is scooching her bottom further and further into the car on the seat. The car seat gets put the farthest forward it can when mom enters the car. Then it gets pushed all the way back once mom sits so that her feet can be swung around in front of her.
Mom knew it was a practice run for getting in the car in preparation for going home. I was worried that she might have become confused and think she is going home then and there, but she didn’t get confused and understood the concept of practicing. The second time she got in, she smiled at dad and Anthony and said, “OK I’m in. Let’s go. Take me home” and laughed jokingly.
I met with the facility Social Worker today to prepare for mom’s homecoming. We needed to discuss the following things:
Neck bandages for the stoma (hole in mom’s neck): Will be supplied by the visiting nurse once mom is home, and by the facility for the first weekend (facility to provide a few)
We buy gloves---no reimbursement or through home care company maybe
30 day scripts for every medication mom is on -- for each prescription including those labeled “as needed”
Script for PT, OT, and Nursing evaluations for the home care company and we give it to the home care nurse when the nurse comes for the initial evaluation
The Home Care Company will constantly keep in touch with mom’s neighborhood primary care doctor
Script for the aide --- 6 hours per day, 7 days per week
Company is called Attentive in Babylon
Pat Chiefo is our contact person –
Contact Home Care Company to change the aide if there are ever problems----to change the Home Care Company, call the Dept. of Social Services nurse
Script for Gerry chair and seat lift today----
Script for transport chair and tub transfer bench today---
Bed and mattress---ordered by facility Social Worker today---fully electric bed---Social Worker got the script from facility doctor today (fully electric beds may not be covered by insurance but should be as per the one company the Social Worker talked to)
Copy of script for mom’s brace from the botox doctor
Once I got to mom’s room, dad brought her to the bathroom alone and did well! Mom and I did some “Logic Links” patterns. For example, you start with about 20 multicolored chips and then you pick a card. The first card mom picked said, “Use 1 green chip, 1 orange chip, and 1 purple chip. Clue 1: The green chip is not the center chip. Clue 2: The orange chip is not the center chip. Clue 3: The purple chip is directly on the right of the green chip.” You follow all the directions to complete a specified pattern. Mom couldn’t even find the right chips until her third card, then she found each color quickly and efficiently. It took her that long to change activities and focus on something new. By the third card, mom was also able to follow 2 of the 3 directions alone!
I left for work and told mom to continue working on a Life Skills work sheet that Claudia brought for her to do. Mom said, “No way! I’m watching TV” and laughed but dad said she worked hard on the sheet after I left.
Saturday evening, Dad and I went out to dinner and a movie. Dad's love and devotion to mom struck me so much during our conversation about mom's homecoming. Here we were, talking about the day mom comes home...going over the most minute details (what car to use to get her home--which would she be able to get in and out of easily, should we transport her via ambulette? Will they both be overwhelmed with guests at their house that day?....on and on the considerations went)...and there was dad...so calm and in control. So serene was he with knowledge in the fact that his "girl" as he refers to mom so tenderly would be finally returning home. I don't know about anyone else, but I don't know many men who would have stayed by mom's side through thick and thin...in snow and sleet and rain and hurricanes...the way that my dad has. I know I've said it before, but what a testament of what love is. They both long for each others company day after day...they both support each other (even mom in the state she is in)...their love remains constant and in tact and secure. It was just something about the way that dad looked Saturday as we talked that conveyed so much more than words can express about 'togetherness' and love. His strong, secure confidence exuded from every aspect of him. It was a most awesome thing to be in the presence of. Indeed, we all certainly have been blessed.
Dad stayed to put mom to bed tonight. Though it is hard for us to wait for mom to get home, and we want her home as soon as possible, pray for God’s Divine Guidance --- He Alone knows when mom should be at home.
"Yet the Lord longs to be gracious to you... Blessed are all who wait for Him." Isaiah 30:18
Tuesday, November 29, 2011
Monday, November 28, 2011
Mom Update, November 28, 2011, Monday
Mom’s update November 28, 2011
Jean started the day with mom today. He said he had a great morning with her. The nurse came in the room and went to give mom her medicine (a liquid that tastes awful) and mom said, “I already took that!” The nurse said, “I am the only one who gives you meds and I didn’t give it to you, you didn’t take it” and mom laughed and looked at Jean! Jean cracked up (good try – A for effort). Jean made sure she drank her prune juice (yum!). He said they read the paper and watched Neil Patrick Harris with Kelly on TV. Pop called while Jean was there and she spoke with him.
Jean left and Anthony came. Anthony stayed with mom until dad came. Dad came late today because he had a physical today. I didn’t get a chance to ask Anthony how she was. I am sure he took mom for a walk down by the big windows or maybe he took her outside since it was so beautiful.
Dad had a great time with mom today. He said they had a lot of fun. He said they were joking around and laughing a lot. Dad took mom to the bathroom by himself and she did well, he also took her with the OT and an aid today and she did well each and every time. Dad said she is getting the idea that she is going home. She told the nurse that she is going home. Mom and dad spent the afternoon watching an old movie on AMC.
Con, Anthony, Sam and her friend Emily came next and dad went home. She ate dinner and had a piece of pizza, salad and cake. They watched a movie on AMC. Sam and Anthony had homework to do so they went to the lounge to do it. They spent some time with mom because it may be the last time they come in the evening to the facility (God willing). Con and mom talked. They were talking about old times. Mom didn’t get upset until the end. Mom wanted to call Anthony so they called him at work. The CNA’s came in and Con stayed in the room to see how they worked with mom. They put her in bed and Con took out her hearing aid and kissed mom goodnight and they all left.
Mom called me tonight and told me to bring her a good breakfast tomorrow. She asked me to bring her bread or a biscuit! I will bring her breakfast and maybe a roll or something. It will be the first time she has “white flour” at breakfast. I will see about getting it. I feel bad since I know it isn’t in her best interest. I think if I bring her an omelet with a few potatoes it will distract her from the roll.
Peace and Be Well,
~Claud
Jean started the day with mom today. He said he had a great morning with her. The nurse came in the room and went to give mom her medicine (a liquid that tastes awful) and mom said, “I already took that!” The nurse said, “I am the only one who gives you meds and I didn’t give it to you, you didn’t take it” and mom laughed and looked at Jean! Jean cracked up (good try – A for effort). Jean made sure she drank her prune juice (yum!). He said they read the paper and watched Neil Patrick Harris with Kelly on TV. Pop called while Jean was there and she spoke with him.
Jean left and Anthony came. Anthony stayed with mom until dad came. Dad came late today because he had a physical today. I didn’t get a chance to ask Anthony how she was. I am sure he took mom for a walk down by the big windows or maybe he took her outside since it was so beautiful.
Dad had a great time with mom today. He said they had a lot of fun. He said they were joking around and laughing a lot. Dad took mom to the bathroom by himself and she did well, he also took her with the OT and an aid today and she did well each and every time. Dad said she is getting the idea that she is going home. She told the nurse that she is going home. Mom and dad spent the afternoon watching an old movie on AMC.
Con, Anthony, Sam and her friend Emily came next and dad went home. She ate dinner and had a piece of pizza, salad and cake. They watched a movie on AMC. Sam and Anthony had homework to do so they went to the lounge to do it. They spent some time with mom because it may be the last time they come in the evening to the facility (God willing). Con and mom talked. They were talking about old times. Mom didn’t get upset until the end. Mom wanted to call Anthony so they called him at work. The CNA’s came in and Con stayed in the room to see how they worked with mom. They put her in bed and Con took out her hearing aid and kissed mom goodnight and they all left.
Mom called me tonight and told me to bring her a good breakfast tomorrow. She asked me to bring her bread or a biscuit! I will bring her breakfast and maybe a roll or something. It will be the first time she has “white flour” at breakfast. I will see about getting it. I feel bad since I know it isn’t in her best interest. I think if I bring her an omelet with a few potatoes it will distract her from the roll.
Peace and Be Well,
~Claud
Mom Update, November 27, 2011, Sunday
Con and Anthony started the day with mom. When they arrived, mom was awake and happy to see them. She asked where I was and Con and Anthony told her they were letting me sleep late today. Her breakfast came and they fixed her oatmeal and had her drink her prune juice! She ate every bit of her breakfast. She then was dressed and put in her chair. Con and Anthony took mom outside but it was a bit nippy and mom wanted to come in. They then took her to the end of the hallway where there is a big window and sat and talked. They looked outside. They counted cars and talked and laughed. She wanted to go to the bathroom so they went back to the room. When she came out of the bathroom her pants were crooked to Anthony told her to stand up so they could fix her pants. She stood up 6 - 7 times! Lunch came and she ate the entire lunch. They hung out, talked and watched TV. Dad came next and stayed with mom until the night time when she was put in bed. I didn't get a chance to speak to dad when he came home, so I will write tomorrow about how mom was this evening.
Please keep mom in your prayers so that all goes well and she comes home at the end of this week.
Peace and be well,
~Claud
Please keep mom in your prayers so that all goes well and she comes home at the end of this week.
Peace and be well,
~Claud
Saturday, November 26, 2011
Mom Update, November 26, 2011, Saturday
Mom’s update November 26, 2011
When I came to see mom this morning she was hysterical crying. She was in a crying jag and practically inconsolable. She was crying that she needed a tissue, but she had one in her hand. She was crying that she was laying down flat, but I had lifted her up in the bed and had her sitting up. I gave her tissues, I held my hand over her stoma so she could blow her nose, but she kept crying. At one point I just said, “Stop crying this isn’t helping you. You need to stop.” She looked at me and started to ease up. I told her that I was there and I wasn’t leaving and that she had a great breakfast and tried to distract her. I gave her breakfast and she calmed down. I felt terrible being stern, but I think she just needed to be snapped out of it. We had a great breakfast together. I brought mom a ham and cheese omelet and home fries.
After breakfast we did a Mets puzzle book that I brought for her. The first activity was connect the dots. She did great. She only missed two numbers. We then did an activity where she had to match players’ names and their jersey number. I asked her if she knew their numbers and she said no. I took out her team baseball cards and found all but two players. She looked at the card and then drew the line from the player to the jersey. We called Anthony to see if he knew the last two players but he didn’t know their numbers. Mom talked to Anthony and he told her that he and Con and the kids were going to Brooklyn today to see Con’s relatives. Dad also called this morning and spoke to mom.
The CNA’s came in to get mom ready for the day. She had a difficult time standing this morning. When the CNA wheeled her back in the room mom said, “Get me thank you notes. I have to thank all these girls.” I will get thank you cards today so that mom can write them tomorrow. I put Mary Tyler Moore on and mom was so happy to watch the show.
The nurse came in the room and said she would be back soon to change mom’s bandage and that she would also do her g-tube! WHAT?! I asked her if she read mom’s care plan and she said she did. She walked out of the room and came back with the care plan sheet to show me that it said G-tube. I went to the nursing supervisor and asked her to check mom’s care plan. They looked at it and said that it says g-tube site. She said that they check and clean the site every day. I am here all the time and so is everyone in my family and I can speak for myself when I say, they DO NOT check OR clean the site daily!
After we watched an episode I took mom downstairs to the vending machines. Mom took her purse. We bought a pack of pretzels and an ice tea. Mom didn’t like the ice tea. We sat in the lobby and people watched. One of mom’s old CNA’s from the vent unit came over to talk to mom. Her face lights up when she sees her. Mom also thinks that she is someone from her past. She thinks she is a student from when mom worked in the schools. She actually does look like a girl from school and Anthony and I often say that she probably thinks it’s her.
We came back to the room and watched another episode of Mary Tyler Moore. It was the Chuckles the Clown episode! It is my favorite episode!
We did sequencing cards today. They were 3 card sequences. She did OK. She was able to put them in order but then had a hard time describing what was on the card in order. We did an activity and then we watched another episode. Dad came and brought the article from Cambridge University about how you can read a word if the first and last letter are in the right place and the middle of the word is scrambled. Mom was able to read the passage!!! Holy Cow! Dad and I couldn’t believe it.
Dad stayed with mom and watched Mary Tyler Moore. They read the paper and looked at magazines and watched TV. Dad left when Terry came and Terry stayed with mom until she went to bed.
Please keep mom in your prayers so that she actually will come home when they say she will. She is expected to be home at the end of the week. There is a meeting with the social worker on Tuesday at 1:30 to go over all the equipment that is needed in the home.
Thank you to all who read this blog and pray for mom! Thank you for all of your support.
Peace and Be Well,
~Claud
When I came to see mom this morning she was hysterical crying. She was in a crying jag and practically inconsolable. She was crying that she needed a tissue, but she had one in her hand. She was crying that she was laying down flat, but I had lifted her up in the bed and had her sitting up. I gave her tissues, I held my hand over her stoma so she could blow her nose, but she kept crying. At one point I just said, “Stop crying this isn’t helping you. You need to stop.” She looked at me and started to ease up. I told her that I was there and I wasn’t leaving and that she had a great breakfast and tried to distract her. I gave her breakfast and she calmed down. I felt terrible being stern, but I think she just needed to be snapped out of it. We had a great breakfast together. I brought mom a ham and cheese omelet and home fries.
After breakfast we did a Mets puzzle book that I brought for her. The first activity was connect the dots. She did great. She only missed two numbers. We then did an activity where she had to match players’ names and their jersey number. I asked her if she knew their numbers and she said no. I took out her team baseball cards and found all but two players. She looked at the card and then drew the line from the player to the jersey. We called Anthony to see if he knew the last two players but he didn’t know their numbers. Mom talked to Anthony and he told her that he and Con and the kids were going to Brooklyn today to see Con’s relatives. Dad also called this morning and spoke to mom.
The CNA’s came in to get mom ready for the day. She had a difficult time standing this morning. When the CNA wheeled her back in the room mom said, “Get me thank you notes. I have to thank all these girls.” I will get thank you cards today so that mom can write them tomorrow. I put Mary Tyler Moore on and mom was so happy to watch the show.
The nurse came in the room and said she would be back soon to change mom’s bandage and that she would also do her g-tube! WHAT?! I asked her if she read mom’s care plan and she said she did. She walked out of the room and came back with the care plan sheet to show me that it said G-tube. I went to the nursing supervisor and asked her to check mom’s care plan. They looked at it and said that it says g-tube site. She said that they check and clean the site every day. I am here all the time and so is everyone in my family and I can speak for myself when I say, they DO NOT check OR clean the site daily!
After we watched an episode I took mom downstairs to the vending machines. Mom took her purse. We bought a pack of pretzels and an ice tea. Mom didn’t like the ice tea. We sat in the lobby and people watched. One of mom’s old CNA’s from the vent unit came over to talk to mom. Her face lights up when she sees her. Mom also thinks that she is someone from her past. She thinks she is a student from when mom worked in the schools. She actually does look like a girl from school and Anthony and I often say that she probably thinks it’s her.
We came back to the room and watched another episode of Mary Tyler Moore. It was the Chuckles the Clown episode! It is my favorite episode!
We did sequencing cards today. They were 3 card sequences. She did OK. She was able to put them in order but then had a hard time describing what was on the card in order. We did an activity and then we watched another episode. Dad came and brought the article from Cambridge University about how you can read a word if the first and last letter are in the right place and the middle of the word is scrambled. Mom was able to read the passage!!! Holy Cow! Dad and I couldn’t believe it.
Dad stayed with mom and watched Mary Tyler Moore. They read the paper and looked at magazines and watched TV. Dad left when Terry came and Terry stayed with mom until she went to bed.
Please keep mom in your prayers so that she actually will come home when they say she will. She is expected to be home at the end of the week. There is a meeting with the social worker on Tuesday at 1:30 to go over all the equipment that is needed in the home.
Thank you to all who read this blog and pray for mom! Thank you for all of your support.
Peace and Be Well,
~Claud
Friday, November 25, 2011
Mom Update, November 25, 2011, Friday
When I arrived at mom’s this morning, she looked up and thanked me for coming and then began to bark out orders!! Hahaha! Her breakfast had just arrived. I set her up and she cried and cried that she doesn’t want to be in the facility any more and that she wants to go home. I told her we could start a count down of the days now! Once she settled down, she began to eat. She called Claudia and, when Claudia asked how mom was, Mom’s reply was: “How am I? Well, physically I’m fine. Mentally, I’m pretty down.” WOW! How great is it that she can articulate her feelings.
Mom enjoys eating her Fiber One cereal…so I let her take her time with it. I also allow her to have a few small bowlfuls so that she is energized and ready for the day. While she ate, I straightened her room. I threw out old magazines and newspapers first. As I did this, mom kept asking in an annoyed tone, “What are you throwing away? Tell me. Show me” and also, “Maybe dad is saving that newspaper for a reason.” I showed her each item I was throwing out so that I could wait for her approval to do so first! She is too much!
We have decided to leave everything in mom’s room until she goes home. The day she leaves, we will pack her and the room up---we are pros at packing up now! It takes us no time at all to do it. The idea behind leaving things as is in her room is to give mom some stability. Mom talks a lot about how she looks at everything on the walls and reads the signs…she creates cognitive games for herself based on the things on the walls (How many signs have the letter ‘e’ or how many girls are in the family…). Most of what is on the walls is there for an educational purpose. The signs all have important meaning. The pictures are there to create memories. The books on the book shelf are arranged a certain way so that mom can look at the shelf and see titles or pages that have meaning.
Mom is used to the way things are in the room and has looked at those walls and the things on them for the last 18 months. No matter what room mom has been in, we always put the pictures and signs and items in the same order on the same walls in the same places—to provide stability and security for mom. We don’t want her to sit there with nothing to look at or to feel that her surroundings are unfamiliar. This would be scary and unsettling for her.
As I cleaned up the shelves and drawers…, mom and I also did a trip down memory lane. I came across both the mitts and the social story Claudia created about having to wear them from back in the days when mom was ripping out 3tubes and climbing out of bed. Looking back now, it is very clear that what we were witnessing was a reaction to the anesthesia from the shunt surgery. It can sometimes take up to a year to get out of a person’s system. Anyway, back to the mitts and the Social Story…I showed mom the mitts and asked her if she remembered them. She didn’t. I was so amazed that she wore those mitts for 9 months and hated every second that she did but never even remembered them. Thank God.
I also found the very first Social Story Claudia made for mom about 14 months ago, the “Getting Better” story. This story, mom remembered. That amazed me too. I didn’t think she would remember the story. We read it together and, as we did, she followed all the directions in the story (“If I want to get better, I need to practice moving my left hand” and “If I want to get better, I need to move my feet”). Mom said, “I can do all this.” When I told her she couldn’t move her feet, or wiggle her toes last year, she couldn’t believe it, saying, “Really?!!!”
I found the “Serita Social Story” too and the “Choice Board” Claudia created for her as well. The “Choice Board” had pictures of the various activities and drills we would run with mom like a picture of beads, or markers, or the scissors. We would show mom the pictures and she would be able to either point to or, later, select the picture of the activity she wanted to do.
She’s come a looonnnggg way baby!!
Mom wrote in her journal next:
“Friday, Day aLter (after) hanksgiving (Thanksgiving)
Yesterday we all stayed at the fcility (facility) and we had a room to ourselves. We had a wonderful Thanksgiving day and my grandchildren and the other children were were all at the dacility (facility) and had a wonderful day. We had a room to ourselves. We played anpus? (games) and were very happy just to be with one another and come home very cullules? It was a wonderful Thanksgiving day. Just to have everybody all together. We played games and just enjoyed all being together.”
Mom had a shower next and then mom asked me to put her make up on. Then we went for a walk. I put mom’s jacket on and went to sit outside in the sun. Claudia and Terry arrived and sat with us. Shortly after that, Con, Anthony, Anthony Michael, Sammy and Dad came too. They sat outside then went up to lunch. After lunch, they went back outside and took mom for a walk around the building. Mom enjoyed that. They went back inside and hung out for a while and then they left—but mom cried really hard so they stayed until she was calm.
Dad spent the rest of the afternoon with mom and put her to bed tonight. He told me that mom did great with just him assisting her today!! But mom was too tired to do any OT or PT work when the therapists came.
“You will live in joy and peace.” Isaiah 55:12
Mom enjoys eating her Fiber One cereal…so I let her take her time with it. I also allow her to have a few small bowlfuls so that she is energized and ready for the day. While she ate, I straightened her room. I threw out old magazines and newspapers first. As I did this, mom kept asking in an annoyed tone, “What are you throwing away? Tell me. Show me” and also, “Maybe dad is saving that newspaper for a reason.” I showed her each item I was throwing out so that I could wait for her approval to do so first! She is too much!
We have decided to leave everything in mom’s room until she goes home. The day she leaves, we will pack her and the room up---we are pros at packing up now! It takes us no time at all to do it. The idea behind leaving things as is in her room is to give mom some stability. Mom talks a lot about how she looks at everything on the walls and reads the signs…she creates cognitive games for herself based on the things on the walls (How many signs have the letter ‘e’ or how many girls are in the family…). Most of what is on the walls is there for an educational purpose. The signs all have important meaning. The pictures are there to create memories. The books on the book shelf are arranged a certain way so that mom can look at the shelf and see titles or pages that have meaning.
Mom is used to the way things are in the room and has looked at those walls and the things on them for the last 18 months. No matter what room mom has been in, we always put the pictures and signs and items in the same order on the same walls in the same places—to provide stability and security for mom. We don’t want her to sit there with nothing to look at or to feel that her surroundings are unfamiliar. This would be scary and unsettling for her.
As I cleaned up the shelves and drawers…, mom and I also did a trip down memory lane. I came across both the mitts and the social story Claudia created about having to wear them from back in the days when mom was ripping out 3tubes and climbing out of bed. Looking back now, it is very clear that what we were witnessing was a reaction to the anesthesia from the shunt surgery. It can sometimes take up to a year to get out of a person’s system. Anyway, back to the mitts and the Social Story…I showed mom the mitts and asked her if she remembered them. She didn’t. I was so amazed that she wore those mitts for 9 months and hated every second that she did but never even remembered them. Thank God.
I also found the very first Social Story Claudia made for mom about 14 months ago, the “Getting Better” story. This story, mom remembered. That amazed me too. I didn’t think she would remember the story. We read it together and, as we did, she followed all the directions in the story (“If I want to get better, I need to practice moving my left hand” and “If I want to get better, I need to move my feet”). Mom said, “I can do all this.” When I told her she couldn’t move her feet, or wiggle her toes last year, she couldn’t believe it, saying, “Really?!!!”
I found the “Serita Social Story” too and the “Choice Board” Claudia created for her as well. The “Choice Board” had pictures of the various activities and drills we would run with mom like a picture of beads, or markers, or the scissors. We would show mom the pictures and she would be able to either point to or, later, select the picture of the activity she wanted to do.
She’s come a looonnnggg way baby!!
Mom wrote in her journal next:
“Friday, Day aLter (after) hanksgiving (Thanksgiving)
Yesterday we all stayed at the fcility (facility) and we had a room to ourselves. We had a wonderful Thanksgiving day and my grandchildren and the other children were were all at the dacility (facility) and had a wonderful day. We had a room to ourselves. We played anpus? (games) and were very happy just to be with one another and come home very cullules? It was a wonderful Thanksgiving day. Just to have everybody all together. We played games and just enjoyed all being together.”
Mom had a shower next and then mom asked me to put her make up on. Then we went for a walk. I put mom’s jacket on and went to sit outside in the sun. Claudia and Terry arrived and sat with us. Shortly after that, Con, Anthony, Anthony Michael, Sammy and Dad came too. They sat outside then went up to lunch. After lunch, they went back outside and took mom for a walk around the building. Mom enjoyed that. They went back inside and hung out for a while and then they left—but mom cried really hard so they stayed until she was calm.
Dad spent the rest of the afternoon with mom and put her to bed tonight. He told me that mom did great with just him assisting her today!! But mom was too tired to do any OT or PT work when the therapists came.
“You will live in joy and peace.” Isaiah 55:12
Thursday, November 24, 2011
Mom Update, November 24, 2011, Thursday, Thanksgiving Day
When I arrived at mom’s room this morning and turned the corner in her doorway, the dividing curtain was closed between mom and her roommate and there was a mess of tissues thrown all over the floor!!!! Tons of tissues everywhere!!! She saw me and yelled at me!! “Where are my hearing aids?!!! I can’t hear anything!! I can’t do anything by myself!! I HATE THIS!!!”
In all actuality, mom had already fed herself her whole breakfast all by herself!!!! With no help!! She did great! She even opened her cereal box and poured her own cereal with no mess!! But she was ONERY!!!! She was nasty this morning!! All part of the grief process….midway to be exact.
We talked. I set her up but it wasn’t fast enough for her! She yelled and barked out commands. When she was set up, we talked. I asked her what she was feeling. She made faces at me and mocked my words as I spoke…I didn’t take it personally, she has to get it all out. Some emotions are literally like poison to our bodies. Mom said she was disgusted because she can’t do anything for herself. She kept saying that and then crying and then eat a little and then repeat the cycle over and over for about 45 minutes.
When she calmed down a little, I told her today is Thanksgiving and that we actually have much to be thankful for. She asked me to turn on the parade. As we watched, she said she wanted Anthony Michael and Sam to make her a pilgrim’s hat to wear today! She called them on the phone (I dialed and she talked). She told Anthony what she wanted and she said Happy Thanksgiving.
Her nurse came in and mom began to get cranky again. The nurse laughed and said mom’s affect is such a vast improvement. The nurse said that everyone loves mom and wants her here at the facility forever, but at the same time, they are really very happy that mom is going home soon. The nurse said that everyone will cry with mom the day she leaves to go home.
Mom began to reminisce about Thanksgivings past saying: “My Aunt Nellie (her father’s sister) used to come every Thanksgiving Day and bring me a big beautiful corsage with all kinds of flowers…autumn colored flowers. And when you kids were little, you would get up on Thanksgiving Day and go sit in the living room and watch the parade on TV and wait for Grandma and Grandpa City (our grandparents from Brooklyn—mom’s parents) and Uncle Twinnies (her twin brothers) to come.”
Mom asked me what she had to be thankful for…she had begun to get disgusted again. I told her she could now do many things alone. I told her that last Thanksgiving, she couldn’t eat solid food or even breathe without a respirator …she couldn’t walk or stand. She couldn’t stay awake more than a few hours a day…My God…she has come so far.
Mom ate and contemplated things seeming to be deep in thought and then she said, “Yeah, I guess I do have a lot to be thankful for…I guess I can still do some things by myself. And what would I have done without all of you?.....” Mom cried and cried again then.
Mom called Dad next but no answer. She called Aunt Carol (her friend of 72 years from Brooklyn). They talked and talked. A very normal, typical conversation. They exchanged stuffing recipes, and turkey recipes and sweet potato recipes too.
When mom’s aide brought her to the bathroom, mom asked where the aide would be today. The aide said Brooklyn so mom said that she used to live there and that Ava goes to Brooklyn College. Then mom said, “Ava is going to be a speech therapist….yeah, so you can’t say ‘ain’t’ in front of her” and laughed! Mom said, “Ava is going to do what Carmine does but you can say ‘ain’t’ in front of him!” She is too much!
We watched the parade after she got dressed and I told her we’d sing every parade song we know!! She laughed. She was very concerned about how she looks…and asked me to put her make up on. She said she wants us to teach her how to do it herself again. I told her we would.
Mom called her 2 brothers next to wish them both a Happy Thanksgiving. They had nice conversations. Mom’s CNA asked how many siblings mom has and I said twin brothers who are 10 years younger than mom. Mom said, “Yes, they are 10 years younger than me so they are 49!” she was joking!! Then mom asked me how old she is and I began to sing, “____ trombones led the big parade!!” Mom said, “Oh my God!! I’m 76? Then the boys are 86!!” laughing!! She likes to joke.
Lenny, Dad and Terry came next and visited, followed by Anthony, Con, Anthony Michael, Sammy, John, Jean, Claudia and Ava. We all reserved one of the recreation rooms and ate dinner together. As we packed up for the day, mom became sad. She said she didn't want to be a problem for anyone and that she worried about how she and dad would make out at home alone. Dad is just so tender with her....it makes me cry to watch them in action...when he helps her stand or anything, he is just so tender..."Come on my girl, you can do this. We can do this together. Come on." They are just such a blessing. What an example of love to us all. Before everyone left to go home, we gave mom a group hug!
I stayed to put mom to bed tonight. We snuggled and watched TV. We prayed together before I left her for the night.
It was a day of laughter, games (Scattergories…), jigsaw puzzles, NOOK Color games, singing…!! We thank you all for your persevering prayer and support over course of these last 17 months. Before we ate dinner, we held hands and prayed and gave thanks for yet another year all together…for all God has done…and for not quitting 5 minutes before the miracle happened.
Happy Thanksgiving with much love to all of you and yours!
“Give thanks to Him who alone does mighty miracles. His faithful love endures forever.” Psalm 136:1-4
In all actuality, mom had already fed herself her whole breakfast all by herself!!!! With no help!! She did great! She even opened her cereal box and poured her own cereal with no mess!! But she was ONERY!!!! She was nasty this morning!! All part of the grief process….midway to be exact.
We talked. I set her up but it wasn’t fast enough for her! She yelled and barked out commands. When she was set up, we talked. I asked her what she was feeling. She made faces at me and mocked my words as I spoke…I didn’t take it personally, she has to get it all out. Some emotions are literally like poison to our bodies. Mom said she was disgusted because she can’t do anything for herself. She kept saying that and then crying and then eat a little and then repeat the cycle over and over for about 45 minutes.
When she calmed down a little, I told her today is Thanksgiving and that we actually have much to be thankful for. She asked me to turn on the parade. As we watched, she said she wanted Anthony Michael and Sam to make her a pilgrim’s hat to wear today! She called them on the phone (I dialed and she talked). She told Anthony what she wanted and she said Happy Thanksgiving.
Her nurse came in and mom began to get cranky again. The nurse laughed and said mom’s affect is such a vast improvement. The nurse said that everyone loves mom and wants her here at the facility forever, but at the same time, they are really very happy that mom is going home soon. The nurse said that everyone will cry with mom the day she leaves to go home.
Mom began to reminisce about Thanksgivings past saying: “My Aunt Nellie (her father’s sister) used to come every Thanksgiving Day and bring me a big beautiful corsage with all kinds of flowers…autumn colored flowers. And when you kids were little, you would get up on Thanksgiving Day and go sit in the living room and watch the parade on TV and wait for Grandma and Grandpa City (our grandparents from Brooklyn—mom’s parents) and Uncle Twinnies (her twin brothers) to come.”
Mom asked me what she had to be thankful for…she had begun to get disgusted again. I told her she could now do many things alone. I told her that last Thanksgiving, she couldn’t eat solid food or even breathe without a respirator …she couldn’t walk or stand. She couldn’t stay awake more than a few hours a day…My God…she has come so far.
Mom ate and contemplated things seeming to be deep in thought and then she said, “Yeah, I guess I do have a lot to be thankful for…I guess I can still do some things by myself. And what would I have done without all of you?.....” Mom cried and cried again then.
Mom called Dad next but no answer. She called Aunt Carol (her friend of 72 years from Brooklyn). They talked and talked. A very normal, typical conversation. They exchanged stuffing recipes, and turkey recipes and sweet potato recipes too.
When mom’s aide brought her to the bathroom, mom asked where the aide would be today. The aide said Brooklyn so mom said that she used to live there and that Ava goes to Brooklyn College. Then mom said, “Ava is going to be a speech therapist….yeah, so you can’t say ‘ain’t’ in front of her” and laughed! Mom said, “Ava is going to do what Carmine does but you can say ‘ain’t’ in front of him!” She is too much!
We watched the parade after she got dressed and I told her we’d sing every parade song we know!! She laughed. She was very concerned about how she looks…and asked me to put her make up on. She said she wants us to teach her how to do it herself again. I told her we would.
Mom called her 2 brothers next to wish them both a Happy Thanksgiving. They had nice conversations. Mom’s CNA asked how many siblings mom has and I said twin brothers who are 10 years younger than mom. Mom said, “Yes, they are 10 years younger than me so they are 49!” she was joking!! Then mom asked me how old she is and I began to sing, “____ trombones led the big parade!!” Mom said, “Oh my God!! I’m 76? Then the boys are 86!!” laughing!! She likes to joke.
Lenny, Dad and Terry came next and visited, followed by Anthony, Con, Anthony Michael, Sammy, John, Jean, Claudia and Ava. We all reserved one of the recreation rooms and ate dinner together. As we packed up for the day, mom became sad. She said she didn't want to be a problem for anyone and that she worried about how she and dad would make out at home alone. Dad is just so tender with her....it makes me cry to watch them in action...when he helps her stand or anything, he is just so tender..."Come on my girl, you can do this. We can do this together. Come on." They are just such a blessing. What an example of love to us all. Before everyone left to go home, we gave mom a group hug!
I stayed to put mom to bed tonight. We snuggled and watched TV. We prayed together before I left her for the night.
It was a day of laughter, games (Scattergories…), jigsaw puzzles, NOOK Color games, singing…!! We thank you all for your persevering prayer and support over course of these last 17 months. Before we ate dinner, we held hands and prayed and gave thanks for yet another year all together…for all God has done…and for not quitting 5 minutes before the miracle happened.
Happy Thanksgiving with much love to all of you and yours!
“Give thanks to Him who alone does mighty miracles. His faithful love endures forever.” Psalm 136:1-4
Wednesday, November 23, 2011
Mom Update, November 23, 2011, Wednesday
It still looks like mom will come home a week from Friday....Friday, December 2, 2011! 98% sure it will be that day!
Claudia started the day with mom this morning. Claudia and John had a rough night. I woke to a text on my cell phone saying that Jean had been in a car accident. Thankfully, praise God, he is fine. His car was totaled though. Thank God Jean is OK. The other driver confessed to being at fault. The other driver swerved to miss a puddle and hit Jean’s car head on. Right now, as I write this, Jean and Claudia and John are in the emergency room getting Jean’s knee x-rayed as per the chiropractor. Please say a prayer for them. Thanks.
Mom needed to use the bathroom. It took sooo long to get help. Breakfast time is hectic with only a few CNAs to hand out all the trays. Finally, 2 of the nurses saw what was going on and helped mom---so nice!
Mom’s friend, Helen, called mom yesterday. Mom was thrilled and surprised. She hasn’t talked to mom in over a year. They had a nice conversation.
Anthony and Con came to see mom this morning too. Mom was watching TV with the table in front of her. They talked to mom and she couldn’t hear them because Claudia forgot to put her hearing aids in. They hung out, talked, read magazines, and then mom had lunch.
Dad came around noon just before lunch. After lunch, dad and the OT worked with mom in the bathroom. Dad helped mom alone in the bathroom and they did really well together (3 times). Dad practices telling mom what to do---to stand, where to place her feet on the floor, how to turn, sit… They did PT in the hallway. Dad said that mom stood at the rail on the wall in the hallway 5 times to a count of 30. Dad said that the physician’s assistant put a “patch” on mom’s neck to dry up the excess secretions she has. The secretions prevent the stoma from healing.
Dad said that, when mom gets home, he is going to bring her for allergy testing again. She used to get allergy shots. Dad and Terry transferred all the contents of mom and dad’s closets from one to the other last night so that mom’s things will be in one room where the beds are, close to her.
Mom read all the signs on the wall after dad left. She asked me with tears in her eyes, “I wonder if dad still likes me or not? I mean I don’t have any make up on or anything.” She cried. I reassured her that dad wouldn’t come sit with her each day if he didn’t love her anymore. Mom then cheered up and teased and said she doesn’t want anyone to come see her without make up on anymore.
I had mom write in her journal. She resisted but wrote:
“Wednesday Nv 23, 2011
Kathy is very mean to me because sHe won’t let me do anything i want to do. I wat (want) to do. I want to sit and watch TV and eat special snacks BUT Kathy wants to work and Kathy wants me to write Kathy is a pest. Kath Anthony and Con came to see me today Kathy came Later, DaD came all afternoon.”
Mom was very fidgety and said she can’t sit still. She said, “It must be my medication.” I told her she doesn’t take any. She was surprised. She said it is from boredom!!
Mom studied the pictures on the closet door. She told me that she wants a new picture of Terry and then she said that, when she dies, she wants all the pictures at her funeral. She is too much!
I told mom that we should do some work and she said, “NO! I want to sit here and just fidget all night” and teased me and laughed. The CNA came to put her to bed next. There was no one available to assist so the nurse came to help. They don’t use the walker and they tell mom to stand but they just lift her manually and give her no time to stand on her own. Very few people follow directions. It is such a hopeless cause. We all work so hard to help mom and some of the people just ignore what is correct to do for mom.
The CNA had mom hanging upside-down in the bed. Her legs and feet were elevated and her head was down lower than on a flat bed. Mom was complaining that she was getting dizzy so I asked the aide to move the head of bed up but I was ignored, all while mom complained of being dizzy. The aide finally said, “Oh really? I didn’t know she was upside down.” So I said, “Stand at the end of the bed and look and you can see what I am talking about.” The aide ignored me. I finally used the remote on the bed to lift mom’s head up. Then, when I turned around, mom began to complain again. When I turned to look at mom, I saw that the aide now had one pillow covering the side of mom’s face, while the other pillow covered the top of her head. The aide was kind in her words and affect (not like the other night---it was the same aide I had a problem with), but the aide was ignoring mom. Unbelievable.
Once mom was in bed comfortably, Lenny came to see her. She was thrilled!!! He sat and talked to her and they reminisced about when he was little. Lenny told mom that she will be home soon and mom said, “Oh! I’m getting paroled finally?!!” They laughed.
Mom kept telling us to go home. Lenny and I tucked mom in and prayed with her and anointed her with oil and left.
“Oh Lord, I will honor and praise your name, for you are my God. You do such wonderful things! You planned them long ago, and now you have accomplished them.” Isaiah 25:1
Claudia started the day with mom this morning. Claudia and John had a rough night. I woke to a text on my cell phone saying that Jean had been in a car accident. Thankfully, praise God, he is fine. His car was totaled though. Thank God Jean is OK. The other driver confessed to being at fault. The other driver swerved to miss a puddle and hit Jean’s car head on. Right now, as I write this, Jean and Claudia and John are in the emergency room getting Jean’s knee x-rayed as per the chiropractor. Please say a prayer for them. Thanks.
Mom needed to use the bathroom. It took sooo long to get help. Breakfast time is hectic with only a few CNAs to hand out all the trays. Finally, 2 of the nurses saw what was going on and helped mom---so nice!
Mom’s friend, Helen, called mom yesterday. Mom was thrilled and surprised. She hasn’t talked to mom in over a year. They had a nice conversation.
Anthony and Con came to see mom this morning too. Mom was watching TV with the table in front of her. They talked to mom and she couldn’t hear them because Claudia forgot to put her hearing aids in. They hung out, talked, read magazines, and then mom had lunch.
Dad came around noon just before lunch. After lunch, dad and the OT worked with mom in the bathroom. Dad helped mom alone in the bathroom and they did really well together (3 times). Dad practices telling mom what to do---to stand, where to place her feet on the floor, how to turn, sit… They did PT in the hallway. Dad said that mom stood at the rail on the wall in the hallway 5 times to a count of 30. Dad said that the physician’s assistant put a “patch” on mom’s neck to dry up the excess secretions she has. The secretions prevent the stoma from healing.
Dad said that, when mom gets home, he is going to bring her for allergy testing again. She used to get allergy shots. Dad and Terry transferred all the contents of mom and dad’s closets from one to the other last night so that mom’s things will be in one room where the beds are, close to her.
Mom read all the signs on the wall after dad left. She asked me with tears in her eyes, “I wonder if dad still likes me or not? I mean I don’t have any make up on or anything.” She cried. I reassured her that dad wouldn’t come sit with her each day if he didn’t love her anymore. Mom then cheered up and teased and said she doesn’t want anyone to come see her without make up on anymore.
I had mom write in her journal. She resisted but wrote:
“Wednesday Nv 23, 2011
Kathy is very mean to me because sHe won’t let me do anything i want to do. I wat (want) to do. I want to sit and watch TV and eat special snacks BUT Kathy wants to work and Kathy wants me to write Kathy is a pest. Kath Anthony and Con came to see me today Kathy came Later, DaD came all afternoon.”
Mom was very fidgety and said she can’t sit still. She said, “It must be my medication.” I told her she doesn’t take any. She was surprised. She said it is from boredom!!
Mom studied the pictures on the closet door. She told me that she wants a new picture of Terry and then she said that, when she dies, she wants all the pictures at her funeral. She is too much!
I told mom that we should do some work and she said, “NO! I want to sit here and just fidget all night” and teased me and laughed. The CNA came to put her to bed next. There was no one available to assist so the nurse came to help. They don’t use the walker and they tell mom to stand but they just lift her manually and give her no time to stand on her own. Very few people follow directions. It is such a hopeless cause. We all work so hard to help mom and some of the people just ignore what is correct to do for mom.
The CNA had mom hanging upside-down in the bed. Her legs and feet were elevated and her head was down lower than on a flat bed. Mom was complaining that she was getting dizzy so I asked the aide to move the head of bed up but I was ignored, all while mom complained of being dizzy. The aide finally said, “Oh really? I didn’t know she was upside down.” So I said, “Stand at the end of the bed and look and you can see what I am talking about.” The aide ignored me. I finally used the remote on the bed to lift mom’s head up. Then, when I turned around, mom began to complain again. When I turned to look at mom, I saw that the aide now had one pillow covering the side of mom’s face, while the other pillow covered the top of her head. The aide was kind in her words and affect (not like the other night---it was the same aide I had a problem with), but the aide was ignoring mom. Unbelievable.
Once mom was in bed comfortably, Lenny came to see her. She was thrilled!!! He sat and talked to her and they reminisced about when he was little. Lenny told mom that she will be home soon and mom said, “Oh! I’m getting paroled finally?!!” They laughed.
Mom kept telling us to go home. Lenny and I tucked mom in and prayed with her and anointed her with oil and left.
“Oh Lord, I will honor and praise your name, for you are my God. You do such wonderful things! You planned them long ago, and now you have accomplished them.” Isaiah 25:1
Tuesday, November 22, 2011
Mom Update, November 22, 2011, Tuesday
Mom’s update November 22, 2011
Last night I didn’t write that Con, Anthony and Sam went to see mom. They said she was ok until she was put in bed and then she cried a lot. They looked at magazines and watched TV. They had a nice visit. They stayed with her until she calmed down.
I had an early meeting this morning so I asked dad to come see mom early and I would just come and set her up and go. So I arrived very early and set mom up. She was in the bathroom so I cleaned her tray with Lysol and stripped her bed and lysoled that too. I took the Lysol and disinfectant wipes into the bathroom when she came out and cleaned the bathroom. She is so close to coming home that I don’t want her to catch anything. Dad came very early so I left for my meeting.
Dad said that PT took mom down to work on weights for her legs for 45mins. today. They said she did well. OT came up to the room and worked with Dad and mom transferring from the bed and the toilet. At one point mom had to go to the bathroom and she was there for a while before someone came to take her off. Dad went intot he bathroom and transferred her to wheelchair all by himself (I am not sure if the OT was there because he knows he can’t do it if he is alone). Dad and mom then sat and watched TV together.
I came to see mom and Kathy and dad were there. Dad left once I came because he was there all day and it was a long day for him. Kathy stayed for a little while before her class and then she had to leave as well. I brought some new life skills worksheets for mom. We did check writing worksheets where she had to write specific information on each check. By the end of the worksheet she was remembering what goes where. I also brought a life skills workbook that has to do with catalogs and mail orders. It has a blank order form with questions on the bottom. I took out a catalog that mom had in her room and we found items and filled in the order form. She did really well. The questions had to do with the title of the catalog, what items does it sell, and how many pages are in the catalog. Dinner came next and mom ate a pot pie and some pears.
After dinner mom kept looking at the catalog and pointing out things she would buy for the grandchildren. We watched TV and just relaxed. The CNA’s came to put mom to bed and I stayed with her a while. We said a prayer and I kissed her goodnight.
***VIP – The Social Worker called from the facility to say they are looking at next Thursday or Friday for her to be discharged!!! Pray all goes well. Everyone is welcome to come to the facility the day she is released.
Peace and Be Well,
~Claud
Last night I didn’t write that Con, Anthony and Sam went to see mom. They said she was ok until she was put in bed and then she cried a lot. They looked at magazines and watched TV. They had a nice visit. They stayed with her until she calmed down.
I had an early meeting this morning so I asked dad to come see mom early and I would just come and set her up and go. So I arrived very early and set mom up. She was in the bathroom so I cleaned her tray with Lysol and stripped her bed and lysoled that too. I took the Lysol and disinfectant wipes into the bathroom when she came out and cleaned the bathroom. She is so close to coming home that I don’t want her to catch anything. Dad came very early so I left for my meeting.
Dad said that PT took mom down to work on weights for her legs for 45mins. today. They said she did well. OT came up to the room and worked with Dad and mom transferring from the bed and the toilet. At one point mom had to go to the bathroom and she was there for a while before someone came to take her off. Dad went intot he bathroom and transferred her to wheelchair all by himself (I am not sure if the OT was there because he knows he can’t do it if he is alone). Dad and mom then sat and watched TV together.
I came to see mom and Kathy and dad were there. Dad left once I came because he was there all day and it was a long day for him. Kathy stayed for a little while before her class and then she had to leave as well. I brought some new life skills worksheets for mom. We did check writing worksheets where she had to write specific information on each check. By the end of the worksheet she was remembering what goes where. I also brought a life skills workbook that has to do with catalogs and mail orders. It has a blank order form with questions on the bottom. I took out a catalog that mom had in her room and we found items and filled in the order form. She did really well. The questions had to do with the title of the catalog, what items does it sell, and how many pages are in the catalog. Dinner came next and mom ate a pot pie and some pears.
After dinner mom kept looking at the catalog and pointing out things she would buy for the grandchildren. We watched TV and just relaxed. The CNA’s came to put mom to bed and I stayed with her a while. We said a prayer and I kissed her goodnight.
***VIP – The Social Worker called from the facility to say they are looking at next Thursday or Friday for her to be discharged!!! Pray all goes well. Everyone is welcome to come to the facility the day she is released.
Peace and Be Well,
~Claud
Mom Update, November 21, 2 011, Monday
Mom’s update November 21, 2011
I started the day with mom and she was in bed crying. We didn’t have a great morning. It was very difficult. I asked mom what was the matter but she couldn’t tell me. I fixed her in the bed and put her hearing aids in. I tried to calm her and assure her that all will be ok and that she is so close to going home. She kept apologizing for crying and I told her it was ok and that she should let it all out. All of a sudden she started to cry even harder and said she needed to go to the bathroom. I saw the CNA but knew that during breakfast they rarely take you to the bathroom because mom needs two people. The CNA said she would get a bedpan and mom started to wail! The CNA asked her what was wrong and she said she didn’t want the bedpan. She wanted to go to the bathroom. The aid this morning was so compassionate. She said no problem and found someone to help her. They took mom to the bathroom and then her breakfast came. I fixed her cereal (add non-sweetened applesauce, cinnamon and fiber one). I went to get her ice water and then fixed her tray. It took mom a while before she was out. I just held her and rubbed her back and said it was ok to cry. I had to go to work so I barely had time to help her eat. I had her eat her scrambled eggs first so I could get rid of the tray. I then left her with her cereal and juice. I placed some magazines on her tray, the phone and a box of tissues and put a clean shirt on the bed (her shirt was a mess because the CNA tried to rush and brushed her teeth when she was in the bathroom – it was nice of her to take her, I’m not complaining). She also made a mess with breakfast because we were rushing as well. I gave her a kiss and left for the day. I called my brother who usually goes next to tell him what happened. I didn’t want him to come and see her shirt a mess, still eating breakfast, with a bib still on.
Anthony came next. She was crying a lot today with Anthony too. She wanted to go for a walk so she wouldn’t disturb her roommate. He took her to the end of the hall where the windows are so he could distract her. She expressed to Anthony that she is afraid to go home. She has conflicting emotions. She feels bad that she won’t be able to clean her house, but she doesn’t want anyone in her house cleaning it. She is feeling that she isn’t getting better and is afraid she won’t be able to walk around her house. I guess she can’t wrap her head around what life will be like when she is home. Dad came while Anthony was there.
~Claud
Mom’s 2 friends, Florence and Maureen, came to see her today. Dad said they all had a great visit. They brought mom a “turkey” bouquet!! So adorable!
Dad and the OT (Occupational Therapist) worked on helping mom in the bathroom again. Dad did the whole thing alone again with a minor mistakewhich he corrected without a problem. Mom stood 4 times to a count of 30 at the hallway rail as well. No walking today.
Dad said that another nurse from the Department of Social Services came today to review what services mom will need at home. The nurse said that mom will receive physical therapy, occupational therapy, and speech therapy to help raise her volume and work on cognition. Mom will also get visits from a nurse at home as well. The nurse said that the physical therapist at the facility now will provide a list of the equipment and supplies mom needs at home (like the hospital bed…). Medicaid pays for the nurse, aide and supplies/equipment. Medicare pays for the services. There is an initial 60 day window for services. After 60 days, according to mom’s progress, mom gets to either continue therapies or they are dismissed (if mom plateaus). There are other insurances that can cover other therapies both in and out of the home as well.
Mom, dad and I took a walk to visit 2 nurses in the old vent wing who haven’t seen mom for a while (months!!). I saw them when I arrived today and promised them a visit. The nurses said mom should go home in a limo and we just may do that!! Mom also had a looonnnggg talk with the Recreation Therapist who worked so much with mom downstairs in the old wing. The therapist and mom both cried over missing each other after mom goes home. Mom thanked the therapist over and over (other nurses watching began to cry too). Mom is a miracle.
Unfortunately, we had an incident with at least one of the new CNAs with mom. Two aides brought mom to the bathroom this afternoon while I was there. When mom was wheeled out of the bathroom, she looked a bit shaken and she began to cry. I asked her what was wrong and she said, “Help me, please help me.” She was practically on the edge of the wheelchair and so I mentioned it to the aide who responded in a “huffy” tone, “Well you have too many pillows behind her.” Wrong answer. I remained kind but firm and smiled and said, “Yes, but they are always there. Let’s try to fix mom because she looks like she could slide off the chair.” The aide remained nasty. Mom, Dad and I went for the walk then and mom cried again. When I asked her what was wrong, mom said, “That person was sooo mean to me…..” and sobbed harder. I asked who and mom told me. I asked what the aide did that was mean and mom said, “The aide was sooo rough with me!!!” and sobbed more. When we got back upstairs, I told one of the nice nurses and the nurse addressed it with the aide. The aide had a poor attitude. The aide came to take mom to be weighed and mom looked upset. I addressed the issue with the aide---nicely but firmly---and the aide pretended to be unaware of a problem and confused but nasty still. The aide left the room. Mom had to use the bathroom and began to fidget. I asked her why she was fidgeting and she said she had to “go to the bathroom.” I said I would call the aides and mom said, “NO! I’ll just go in the diaper” and did so. Mom hasn’t done this during the day in months! Mom was afraid or uncomfortable to be with the aide in the bathroom. I found the aide in the hallway and told the aide that mom needed to be changed whenever there was a chance. The aide was nasty. I told the aide that whatever the problem was in the bathroom before, it disturbed mom and made her feel uncomfortable. The aide was nasty and said, “Well, I didn’t do anything different with her. Look, your mother is a big woman and very heavy and she doesn’t stand at all. She can’t stand up.” I told the aide that was no reason to be rough and that mom CAN indeed stand up. The aide said, “Well, not for me she doesn’t” I told the aide it could be the affect that is making mom nervous and that all it takes is kindness, patience, and love to get mom to do what she needs to do. The aide said, “I always treat my patients that way. Look, would you rather she gets hurt when she falls down?” I reported the aide to another nurse and left a message with the night nursing supervisor as well. I told them all that we are no longer comfortable with this person helping mom and that mom is not comfortable either. I plan to make a surprise visit later tonight before the aide leaves for home to make sure mom is OK. This is the last thing we need a week before mom leaves!!!
~Kathy
Peace and Be Well
I started the day with mom and she was in bed crying. We didn’t have a great morning. It was very difficult. I asked mom what was the matter but she couldn’t tell me. I fixed her in the bed and put her hearing aids in. I tried to calm her and assure her that all will be ok and that she is so close to going home. She kept apologizing for crying and I told her it was ok and that she should let it all out. All of a sudden she started to cry even harder and said she needed to go to the bathroom. I saw the CNA but knew that during breakfast they rarely take you to the bathroom because mom needs two people. The CNA said she would get a bedpan and mom started to wail! The CNA asked her what was wrong and she said she didn’t want the bedpan. She wanted to go to the bathroom. The aid this morning was so compassionate. She said no problem and found someone to help her. They took mom to the bathroom and then her breakfast came. I fixed her cereal (add non-sweetened applesauce, cinnamon and fiber one). I went to get her ice water and then fixed her tray. It took mom a while before she was out. I just held her and rubbed her back and said it was ok to cry. I had to go to work so I barely had time to help her eat. I had her eat her scrambled eggs first so I could get rid of the tray. I then left her with her cereal and juice. I placed some magazines on her tray, the phone and a box of tissues and put a clean shirt on the bed (her shirt was a mess because the CNA tried to rush and brushed her teeth when she was in the bathroom – it was nice of her to take her, I’m not complaining). She also made a mess with breakfast because we were rushing as well. I gave her a kiss and left for the day. I called my brother who usually goes next to tell him what happened. I didn’t want him to come and see her shirt a mess, still eating breakfast, with a bib still on.
Anthony came next. She was crying a lot today with Anthony too. She wanted to go for a walk so she wouldn’t disturb her roommate. He took her to the end of the hall where the windows are so he could distract her. She expressed to Anthony that she is afraid to go home. She has conflicting emotions. She feels bad that she won’t be able to clean her house, but she doesn’t want anyone in her house cleaning it. She is feeling that she isn’t getting better and is afraid she won’t be able to walk around her house. I guess she can’t wrap her head around what life will be like when she is home. Dad came while Anthony was there.
~Claud
Mom’s 2 friends, Florence and Maureen, came to see her today. Dad said they all had a great visit. They brought mom a “turkey” bouquet!! So adorable!
Dad and the OT (Occupational Therapist) worked on helping mom in the bathroom again. Dad did the whole thing alone again with a minor mistakewhich he corrected without a problem. Mom stood 4 times to a count of 30 at the hallway rail as well. No walking today.
Dad said that another nurse from the Department of Social Services came today to review what services mom will need at home. The nurse said that mom will receive physical therapy, occupational therapy, and speech therapy to help raise her volume and work on cognition. Mom will also get visits from a nurse at home as well. The nurse said that the physical therapist at the facility now will provide a list of the equipment and supplies mom needs at home (like the hospital bed…). Medicaid pays for the nurse, aide and supplies/equipment. Medicare pays for the services. There is an initial 60 day window for services. After 60 days, according to mom’s progress, mom gets to either continue therapies or they are dismissed (if mom plateaus). There are other insurances that can cover other therapies both in and out of the home as well.
Mom, dad and I took a walk to visit 2 nurses in the old vent wing who haven’t seen mom for a while (months!!). I saw them when I arrived today and promised them a visit. The nurses said mom should go home in a limo and we just may do that!! Mom also had a looonnnggg talk with the Recreation Therapist who worked so much with mom downstairs in the old wing. The therapist and mom both cried over missing each other after mom goes home. Mom thanked the therapist over and over (other nurses watching began to cry too). Mom is a miracle.
Unfortunately, we had an incident with at least one of the new CNAs with mom. Two aides brought mom to the bathroom this afternoon while I was there. When mom was wheeled out of the bathroom, she looked a bit shaken and she began to cry. I asked her what was wrong and she said, “Help me, please help me.” She was practically on the edge of the wheelchair and so I mentioned it to the aide who responded in a “huffy” tone, “Well you have too many pillows behind her.” Wrong answer. I remained kind but firm and smiled and said, “Yes, but they are always there. Let’s try to fix mom because she looks like she could slide off the chair.” The aide remained nasty. Mom, Dad and I went for the walk then and mom cried again. When I asked her what was wrong, mom said, “That person was sooo mean to me…..” and sobbed harder. I asked who and mom told me. I asked what the aide did that was mean and mom said, “The aide was sooo rough with me!!!” and sobbed more. When we got back upstairs, I told one of the nice nurses and the nurse addressed it with the aide. The aide had a poor attitude. The aide came to take mom to be weighed and mom looked upset. I addressed the issue with the aide---nicely but firmly---and the aide pretended to be unaware of a problem and confused but nasty still. The aide left the room. Mom had to use the bathroom and began to fidget. I asked her why she was fidgeting and she said she had to “go to the bathroom.” I said I would call the aides and mom said, “NO! I’ll just go in the diaper” and did so. Mom hasn’t done this during the day in months! Mom was afraid or uncomfortable to be with the aide in the bathroom. I found the aide in the hallway and told the aide that mom needed to be changed whenever there was a chance. The aide was nasty. I told the aide that whatever the problem was in the bathroom before, it disturbed mom and made her feel uncomfortable. The aide was nasty and said, “Well, I didn’t do anything different with her. Look, your mother is a big woman and very heavy and she doesn’t stand at all. She can’t stand up.” I told the aide that was no reason to be rough and that mom CAN indeed stand up. The aide said, “Well, not for me she doesn’t” I told the aide it could be the affect that is making mom nervous and that all it takes is kindness, patience, and love to get mom to do what she needs to do. The aide said, “I always treat my patients that way. Look, would you rather she gets hurt when she falls down?” I reported the aide to another nurse and left a message with the night nursing supervisor as well. I told them all that we are no longer comfortable with this person helping mom and that mom is not comfortable either. I plan to make a surprise visit later tonight before the aide leaves for home to make sure mom is OK. This is the last thing we need a week before mom leaves!!!
~Kathy
Peace and Be Well
Monday, November 21, 2011
Mom Update, November 20, 2011, Sunday
Mom’s update November 20, 2011
I started the day with mom today. Today is Ava’s 19th birthday. I went to the bagel store in the morning to get my breakfast and something for mom. Today I got her turkey bacon to add to her eggs that she gets for breakfast. I then went across the street to CVS to print out the pictures I took yesterday of mom’s house. I took many pictures of each room from all different angles. I got to CVS and had to wait for them to open.
When I arrived mom was lying in her bed with her eyes open. She was happy to see me. I fixed her in the bed and did the whole routine; hearing aids, glasses, and ice water. Breakfast came and I set her up with her turkey bacon and fixed her oatmeal. I brought a Tony Bennett CD, Duets II. I played it for mom and her roommate during breakfast. After breakfast, I took out the pictures. I put them in order from walking in the back door, into the living room, then the kitchen and then down the hallway to the bedrooms. I showed her the dining room and she was confused at first but then things started to look familiar.
I labeled the back of each picture as to what room it was. She asked a lot of very relevant questions. At times, she had a difficult time labeling all of the items. She would be able to if I gave her either the first letter or the first sound of the word. She wanted me to hold up the pictures as if they were walls to make a 3d image of the room. She would point to a part of the room to the right or left, off the picture out in space, and say, “Is this where the kitchen is?” or “Is this where the dining room is?” She thought there was too many nick knacks. She said, “Who is going to clean all these things?” Mom said, “This cleaning lady must have fainted when she saw all this STUFF!”
I was trying to describe how we moved her bed and that when you walk into your room the bed is right there. Mom said, “My bed is in the living room?” I said to her, “No! What do you think you are, Willie Wonka? We moved your bed to the other side of your bedroom.” Mom said, “All I see are things to clean.”
I only took pictures of three of the walls in her bedroom and it was making her crazy. She kept asking about the wall with the bedroom door and the closets. Oh well, I tried.
After the pictures, I put in a movie for mom and her roommate. Her roommate’s daughter-in-law took out movies form the library for them to watch. Today we watched “The Matchmaker” with Tony Perkins, Shirley Booth and Shirley MacLaine. It is Hello Dolly without the music. It took an hour for someone to come take mom to the bathroom this morning. I kept going out to ask, but no one came. It is so frustrating. Mom didn’t have to go immediately today, she actually was able to wait, but that’s not the point. The feeling was there an hour ago.
Con and mom looked at the movie book and mom was able to answer questions and she was able to remember a lot of movies and actors. Lunch came and she ate lunch. After lunch, they went outside and walked around the building. Mom had to use the bathroom and the CNA said she had to get another person. It took forever to get someone to come to take her. She then left mom in the bathroom for a long time. They stayed with mom for a while longer and then left.
Later in the evening mom started to cry a lot. She is crying that she wants to go home. Dad told her not to worry because she IS coming home. The CNA came in the room to put her to bed and said she was going to put her to bed and then she would put her on the bedpan. Dad said, “No, she goes to the bathroom.” The CNA left and never came back. Dad had to go get the nurse and then he and the CNA put her on the toilet. Weekends are crazy!
Dad stayed with mom until she was put to bed.
Peace and Be Well,
~Claudia
I started the day with mom today. Today is Ava’s 19th birthday. I went to the bagel store in the morning to get my breakfast and something for mom. Today I got her turkey bacon to add to her eggs that she gets for breakfast. I then went across the street to CVS to print out the pictures I took yesterday of mom’s house. I took many pictures of each room from all different angles. I got to CVS and had to wait for them to open.
When I arrived mom was lying in her bed with her eyes open. She was happy to see me. I fixed her in the bed and did the whole routine; hearing aids, glasses, and ice water. Breakfast came and I set her up with her turkey bacon and fixed her oatmeal. I brought a Tony Bennett CD, Duets II. I played it for mom and her roommate during breakfast. After breakfast, I took out the pictures. I put them in order from walking in the back door, into the living room, then the kitchen and then down the hallway to the bedrooms. I showed her the dining room and she was confused at first but then things started to look familiar.
I labeled the back of each picture as to what room it was. She asked a lot of very relevant questions. At times, she had a difficult time labeling all of the items. She would be able to if I gave her either the first letter or the first sound of the word. She wanted me to hold up the pictures as if they were walls to make a 3d image of the room. She would point to a part of the room to the right or left, off the picture out in space, and say, “Is this where the kitchen is?” or “Is this where the dining room is?” She thought there was too many nick knacks. She said, “Who is going to clean all these things?” Mom said, “This cleaning lady must have fainted when she saw all this STUFF!”
I was trying to describe how we moved her bed and that when you walk into your room the bed is right there. Mom said, “My bed is in the living room?” I said to her, “No! What do you think you are, Willie Wonka? We moved your bed to the other side of your bedroom.” Mom said, “All I see are things to clean.”
I only took pictures of three of the walls in her bedroom and it was making her crazy. She kept asking about the wall with the bedroom door and the closets. Oh well, I tried.
After the pictures, I put in a movie for mom and her roommate. Her roommate’s daughter-in-law took out movies form the library for them to watch. Today we watched “The Matchmaker” with Tony Perkins, Shirley Booth and Shirley MacLaine. It is Hello Dolly without the music. It took an hour for someone to come take mom to the bathroom this morning. I kept going out to ask, but no one came. It is so frustrating. Mom didn’t have to go immediately today, she actually was able to wait, but that’s not the point. The feeling was there an hour ago.
Con and mom looked at the movie book and mom was able to answer questions and she was able to remember a lot of movies and actors. Lunch came and she ate lunch. After lunch, they went outside and walked around the building. Mom had to use the bathroom and the CNA said she had to get another person. It took forever to get someone to come to take her. She then left mom in the bathroom for a long time. They stayed with mom for a while longer and then left.
Later in the evening mom started to cry a lot. She is crying that she wants to go home. Dad told her not to worry because she IS coming home. The CNA came in the room to put her to bed and said she was going to put her to bed and then she would put her on the bedpan. Dad said, “No, she goes to the bathroom.” The CNA left and never came back. Dad had to go get the nurse and then he and the CNA put her on the toilet. Weekends are crazy!
Dad stayed with mom until she was put to bed.
Peace and Be Well,
~Claudia
Sunday, November 20, 2011
Mom Update, November 19, 2011, Saturday
I arrived at mom’s very early today and she was sleeping. I went to get her fresh water in her pitcher and ice water in her cup. When I returned with her water, mom said, “I have been waiting for you for a long time.” I told her she was fibbing and that I was there already and she was asleep. Gotcha! We laughed and I fixed her in the bed and put her hearing aids in and her glasses on. The PT came in and asked how everything went yesterday. He felt bad that mom didn’t do her best in front of the nurse. I asked him about the transport chair and he said that it what he wants her to have. He said the only reason you get a “wheelchair” for a person is if they are sitting in it all day, but mom will be sitting on her chairs and couch. He said it is durable enough to take out to stores and doctor’s appointments.
The PT left and mom and I were talking. I had on the TV show “Sell This House” where they fix up a house so they can sell it. They had a very messy and dirty house on and mom said, “That’s what my house must look like.” I told her it doesn’t and that it is clean. She then said, “So we have a cleaning lady?” (This concept is foreign to mom’s generation – she can’t wrap her head around it) I told her yes and mom said, “She lives there?” I said, “No! What do you think, you have Hazel living with you?” Mom cracked up! I told her the woman comes every other week and mom said, “That’s not enough!” I reassured her that it is fine and that dad cleans in between.
After breakfast, I did a newspaper worksheet. It was a different kind of worksheet in that you used a real newspaper to answer the questions. I bought her a Newsday, so we used that. The questions were related to the index and what page different things were on. She answered every question. I also gave her a life skill worksheet that worked on food labels. They show you a food label on a specific product and ask questions such as, how many calories are in this?
The CNA’s came in to take mom to the bathroom and while she was unavailable, Sammy called. Sammy calls mom everyday! I told her mom would call her back.
John came to see mom. Mom was surprised to see him. I finished primping mom and John stayed with mom. I had to leave to go to dad to help him with some things in the house. Kathy stopped by for a quick visit and left to do homework.
John and mom watched the food network. They did the Logic Link puzzle. John had to prompt her a lot but she attended to the activity and sometimes that’s all we can ask for. John did fine motor activities – square, circle and triangle on the rods. She did great and rolled her eyes as if it were too easy. Lunch came and it was chicken on the bone (so safe for people in nursing care!) John was freaking out that they had bones and he tried to pull the meat off of the bone (with a fork and knife of course!) but mom was getting angry and said she could eat it fine. John watched so carefully, but mom did great. He cleaned her up after lunch and Angelo called. John spoke to him for a while. Terry came next and John left.
Dad came after Terry and they stayed with mom until she fell asleep. I didn’t get to talk to them to see what they did, but I will add it tomorrow.
Peace and Be Well,
~Claud
The PT left and mom and I were talking. I had on the TV show “Sell This House” where they fix up a house so they can sell it. They had a very messy and dirty house on and mom said, “That’s what my house must look like.” I told her it doesn’t and that it is clean. She then said, “So we have a cleaning lady?” (This concept is foreign to mom’s generation – she can’t wrap her head around it) I told her yes and mom said, “She lives there?” I said, “No! What do you think, you have Hazel living with you?” Mom cracked up! I told her the woman comes every other week and mom said, “That’s not enough!” I reassured her that it is fine and that dad cleans in between.
After breakfast, I did a newspaper worksheet. It was a different kind of worksheet in that you used a real newspaper to answer the questions. I bought her a Newsday, so we used that. The questions were related to the index and what page different things were on. She answered every question. I also gave her a life skill worksheet that worked on food labels. They show you a food label on a specific product and ask questions such as, how many calories are in this?
The CNA’s came in to take mom to the bathroom and while she was unavailable, Sammy called. Sammy calls mom everyday! I told her mom would call her back.
John came to see mom. Mom was surprised to see him. I finished primping mom and John stayed with mom. I had to leave to go to dad to help him with some things in the house. Kathy stopped by for a quick visit and left to do homework.
John and mom watched the food network. They did the Logic Link puzzle. John had to prompt her a lot but she attended to the activity and sometimes that’s all we can ask for. John did fine motor activities – square, circle and triangle on the rods. She did great and rolled her eyes as if it were too easy. Lunch came and it was chicken on the bone (so safe for people in nursing care!) John was freaking out that they had bones and he tried to pull the meat off of the bone (with a fork and knife of course!) but mom was getting angry and said she could eat it fine. John watched so carefully, but mom did great. He cleaned her up after lunch and Angelo called. John spoke to him for a while. Terry came next and John left.
Dad came after Terry and they stayed with mom until she fell asleep. I didn’t get to talk to them to see what they did, but I will add it tomorrow.
Peace and Be Well,
~Claud
Friday, November 18, 2011
Mom Update, November 18, 2011, Friday
When I arrived this morning, mom was sitting in bed (though mom couldn’t reach her food well). Mom looked so cute though because someone (I suppose her CNA) gave her the full box of Fiber One cereal and the phone, as well as her typical breakfast on the tray. Mom was sitting in bed covered in some of the cereal—she had the bag of cereal in her hand and had tried to pour it into the bowl but got some all over the place as well. She wasn’t upset, she laughed and asked me to help her.
Mom’s roommate said she had French Toast for breakfast and mom’s eyes lit up widely and mom said, “Hey!! Who does she know?!!! How come I can’t get French Toast?” I told her we want her to have protein for breakfast and mom made a mocking face at me.
Mom said she was very confused today. She said, “I’m so confused today. Where am I again?” I asked her where she thought she was and she said, “I think I’m in Brooklyn, right?” Then mom thought that dad slept here too but in another room. She may have been sleepy—it was early and she had woke up not long before, maybe that’s why she was confused. She also said she had many dreams last night. I guess one of the good things about this is that mom is able to both articulate how she feels and also to distinguish that she is confused.
I told mom that one of her childhood friends lost her husband this week. Mom remembered his name and said, “Boy, he used to rib my father good!!” She said she couldn’t believe he was gone and that she felt she should go to the wake and funeral. I told her we could send a nice letter and call her friend later.
Mom asked for Claudia and asked where she was working today. Mom wanted to know if Claudia is with the same students every day. Mom asked for dad too. We watched the Regis show this morning. Mom said it is his last one. She also said, “I remember years ago when he was just like a second banana. I think he began with Jack Parr.” Mom watched and commented appropriately.
Claudia and I are going to prepare a “Home” book for mom. We are going to take pictures of every room in her house and also of the yard so that we can help mom remember home. It is quite possible that, once mom gets home, she may not remember it and be disoriented or even uncomfortable being there. Hopefully, based on how she has been progressing, this won’t happen.
John and Con’s cousin came to see mom this morning. Mom was thrilled to see him!!! She exclaimed his name excitedly and then promptly told me to cover her up because he was in the room (we were preparing to get out of bed to go to the bathroom). Mom talked to him and then I caught him up on mom’s progress…as mom either listened and commented or said, “I can’t hear what anybody’s saying!!” over and over. She still has the “auditory jumbling” going on where, when there is a conversation in the room around her, she can’t focus or filter out all the words in a way that she understands. You need to speak slowly and one person at a time in order for her to be able to follow the conversation. The jumbling that goes on auditorily creates a situation where all the words become background sounds with equal volume to all the other sounds in the environment. When we listen to someone speak, we are able to focus on his/her words while we filter out all other sounds in the environment. Mom can’t do that yet. To her, all the sounds are the same and are unable to stand out one from another. So conversational talking becomes a lot of noise and nothing else to mom. She can’t filter out or isolate just the sounds that make words from things like the TV or two people talking or someone talking in the hallway or the hum of a car engine outside or whatever. All the sounds sound the same and make the same level of volume. Hopefully, this ability to filter sound in a group will evolve back to normal soon.
Mom went to the shower while John’s cousin and I talked. He told me he would make copies of some high level speech/language related tasks for us to do with mom. He is also amazed and pleased with her progress. He couldn’t believe that mom isn’t on any medication any more!! She amazes us all.
When mom finished her shower, it was just me, mom and her new aide in the room. This aide had mom once or twice in the old respiratory wing where mom once was. The CNA said that we all (our family) should know that mom’s recovery is due to all that her family has done for her, young and old. The CNA wanted us to know that mom’s recovery is a miracle and that the CNA can’t get over mom’s progress. The CNA remembers mom on a vent and in a coma!
Anthony came next and immediately began to work on mom’s legs. He tried to get her to stand. Mom stood up but not really straight about 5 times…to a count of 81, 40, 30, 18, and I think 20. She loves to laugh with Anthony and tease him and he her. Mom’s roommate has a purple shaggy blanket on the bed. Mom asked Anthony what kind of blanket it was and Anthony said, “She skinned Grover!!” Mom went hysterical!!!
The facility Social Worker found me to say that the nurse from the Department of Social Services was coming TODAY and not Monday as planned. I phoned Claudia and Dad. Dad was on his way and Claudia came right over too.
While we waited and before lunch, I played a game with mom that I made up called, “The Home Game.” In preparation for mom’s homecoming, I asked her questions about her house.
“Do you go in the back or the front door at your house?” Mom said, “Back” (Correct)
“What room do you walk into?” Mom said, “My kitchen?” I said, “No…” Mom said, “My dining room? That’s silly!” (Correct)
“What’s in your dining room?” Mom said, “All dad’s junk!” (Correct!!) Then mom said, “It looks like Katherine and Zachary’s in West…West…” (they are mom’s mother’s cousins). Mom said, “There’s a china closet and half….uh…what do you call it?...on the right. China closet on the left and Grandma’s china closet.” (Correct)
“If you walk straight through the dining room, what’s there?” Mom said, “The living room and more of dad’s junk” (Correct) “A china closet on the right…” (Correct)
Claudia showed mom pictures of her and dad’s house next. Mom knew almost all the pictures. When Claudia showed mom a picture of their fireplace and mantle, mom said, “That’s in my house!!” and began to cry.
Mom ate lunch next and then the nurse from the D.O.S.S. came. All went well. There are many different programs available. Mom is going to get the Personal Care Aide program. This means that there is no cap on the expenses (in the Long Term, Lombardi program, there are caps so you sometimes have to prioritize needs and, as a result, not get some services, items…).
The program mom is going into has no cap. Mom will receive weekly visits from a nurse (or maybe more depending on mom’s needs). Mom will also get physical therapy (PT) at home as well. A physical therapist will come to the house to assess mom, then, based on mom’s abilities and needs, she will get a certain amount of service per week.
Mom will also get visits from a Personal Care Aide. This is different from a Home Health Aide. A Home Health Aide can legally/professionally do more like feed mom, apply creams or ointments for medicinal purposes… Mom is not getting this type of aide because this type of aide only comes with the Long Term care program. The nurse from D.O.S.S. did not feel mom needs this type of care. An aide would also be with mom for an 7 hour block of time straight like 7 a.m. through 3 p.m. This Long Term program costs less money per patient because there is a cap on the cost for services due to the fact that the premise is that the person will need the care until he or she dies.
Mom is getting the Personal Care Aide program which has no cap on services because the idea is that mom will eventually get better and better so the services, though more in cost, won’t theoretically last as long. With this program, mom gets physical therapy as needed and then she also gets visits from a nurse as needed. Mom will get a Personal Care Aide who can do things like bath her, shower her, dress her, make her bed, prepare meals… This Aide comes on whatever schedule we want. We will have the Aide from 8 a.m. through 11 a.m. and then again from 4 p.m. through 7 p.m. This way, the Aide can get mom ready for the day and then later, ready for bed. If we need more hours of service from her, we can get/could have gotten more. We can make changes to the program as needed once mom is home and any time thereafter. We can break the hours up any way we’d like or need.
It was recommended that mom get a hospital bed and not use the Temperpedic bed she has now. Medicaid pays for all the items/equipment mom needs. Medicare pays for the therapies like physical therapy. Medicaid pays for the nurse and the aide.
All in all, it can take up to 2 more weeks for mom to come home (worst case scenario) and up to 5 days in the best case scenario. We were told not to get our hopes up for her to be home for Thanksgiving because the services and availability of people next week will be sparse due to the holiday. We will have Thanksgiving at the facility with mom. We will have a 2 day notice of when mom is able to come home.
After the nurse, Anthony and Claudia left, mom and I played with the IPAD. Mom did the “Toy Story 3 Camouflage” app. This is like a hidden pictures game. You see a picture and get a written list of items to find. Mom used to LOVE doing these puzzles which motivated her now, however, she had a most difficult time with the task. She was only able to find 2 items independently. She also became frustrated and the fidgetiness began so I quickly changed activities.
Mom tried the “Super Why” app on the IPAD next. This one was so easy for her that she said, “Is this it? Are you kidding me?” I remember when she couldn’t do it at all a few months back! This app shows sentences and you find the missing word, or words and you find the missing letters.
Mom zipped through an app on FUNCTIONS next: “Show me the one that cleans the carpet” or “Touch the one that has four legs” or “Show me the one you sleep on.” A word jumble app followed. Mom LOVES words and word jumbles!! She zipped through this too!!! She unscrambled words like “Together, seven, full, try, light, today…” She lasted a long time with this app and loved it.
Mom did the “Inference Sentences” app next. It says aloud things like, “When your hair is a mess, use me to look your best. What am I?” (Mom: “Comb”). Mom did really great with these and zipped through them all saying, “This is too easy!”
We tried the Baseball Facts app which involves multiplication facts from 1-12 but it was too difficult for mom to do. She also tried the “tangrams” app and did well identifying where the pieces go but had difficulty getting the pieces to stay where they belong. Another app we tried was a puzzle one---you see the outline of a shape and the marked puzzle spots and then you move the pieces into the right place. This, too, was too hard for mom.
She became tired and asked me if there were any books to listen to. I showed her the titles and she selected, “The Hiding Place” by Corrie Ten Boom. However, she tired of listening easily (I forgot the headphones so it was hard for her to filter the sound). She asked for a movie next and selected, “Doubt.” Mom kept saying that she was supposed to play Meryl Streep’s part at the Playhouse (she was supposed to). She sat and watched the whole movie on the IPAD using headphones. I don’t think I ever saw her concentrate so much on a movie!!! EVER!
Mom’s friend, Maureen, called and she and mom had a nice conversation. When Maureen asked mom if she is doing better with walking, mom said, “No, not really--walking is still precarious.” What an answer!!! Mom told us that Maureen is going to be traveling soon and told us where she was going too!
Mom continued to watch, “Doubt” and I left to go cook dinner around 5:30. It was good to be together with family today and be with mom and dad for the day.
Mom talked on the phone with Lenny tonight. He was on his way to a play at school. Mom also signed a card for Ava’s birthday which will be on Sunday.
Mom will soon be home……unbelievable.
“One more thing--please prepare a…room for me, for I am hoping that God will answer your prayers and let me return to you soon.”Philemon 1:22
Mom’s roommate said she had French Toast for breakfast and mom’s eyes lit up widely and mom said, “Hey!! Who does she know?!!! How come I can’t get French Toast?” I told her we want her to have protein for breakfast and mom made a mocking face at me.
Mom said she was very confused today. She said, “I’m so confused today. Where am I again?” I asked her where she thought she was and she said, “I think I’m in Brooklyn, right?” Then mom thought that dad slept here too but in another room. She may have been sleepy—it was early and she had woke up not long before, maybe that’s why she was confused. She also said she had many dreams last night. I guess one of the good things about this is that mom is able to both articulate how she feels and also to distinguish that she is confused.
I told mom that one of her childhood friends lost her husband this week. Mom remembered his name and said, “Boy, he used to rib my father good!!” She said she couldn’t believe he was gone and that she felt she should go to the wake and funeral. I told her we could send a nice letter and call her friend later.
Mom asked for Claudia and asked where she was working today. Mom wanted to know if Claudia is with the same students every day. Mom asked for dad too. We watched the Regis show this morning. Mom said it is his last one. She also said, “I remember years ago when he was just like a second banana. I think he began with Jack Parr.” Mom watched and commented appropriately.
Claudia and I are going to prepare a “Home” book for mom. We are going to take pictures of every room in her house and also of the yard so that we can help mom remember home. It is quite possible that, once mom gets home, she may not remember it and be disoriented or even uncomfortable being there. Hopefully, based on how she has been progressing, this won’t happen.
John and Con’s cousin came to see mom this morning. Mom was thrilled to see him!!! She exclaimed his name excitedly and then promptly told me to cover her up because he was in the room (we were preparing to get out of bed to go to the bathroom). Mom talked to him and then I caught him up on mom’s progress…as mom either listened and commented or said, “I can’t hear what anybody’s saying!!” over and over. She still has the “auditory jumbling” going on where, when there is a conversation in the room around her, she can’t focus or filter out all the words in a way that she understands. You need to speak slowly and one person at a time in order for her to be able to follow the conversation. The jumbling that goes on auditorily creates a situation where all the words become background sounds with equal volume to all the other sounds in the environment. When we listen to someone speak, we are able to focus on his/her words while we filter out all other sounds in the environment. Mom can’t do that yet. To her, all the sounds are the same and are unable to stand out one from another. So conversational talking becomes a lot of noise and nothing else to mom. She can’t filter out or isolate just the sounds that make words from things like the TV or two people talking or someone talking in the hallway or the hum of a car engine outside or whatever. All the sounds sound the same and make the same level of volume. Hopefully, this ability to filter sound in a group will evolve back to normal soon.
Mom went to the shower while John’s cousin and I talked. He told me he would make copies of some high level speech/language related tasks for us to do with mom. He is also amazed and pleased with her progress. He couldn’t believe that mom isn’t on any medication any more!! She amazes us all.
When mom finished her shower, it was just me, mom and her new aide in the room. This aide had mom once or twice in the old respiratory wing where mom once was. The CNA said that we all (our family) should know that mom’s recovery is due to all that her family has done for her, young and old. The CNA wanted us to know that mom’s recovery is a miracle and that the CNA can’t get over mom’s progress. The CNA remembers mom on a vent and in a coma!
Anthony came next and immediately began to work on mom’s legs. He tried to get her to stand. Mom stood up but not really straight about 5 times…to a count of 81, 40, 30, 18, and I think 20. She loves to laugh with Anthony and tease him and he her. Mom’s roommate has a purple shaggy blanket on the bed. Mom asked Anthony what kind of blanket it was and Anthony said, “She skinned Grover!!” Mom went hysterical!!!
The facility Social Worker found me to say that the nurse from the Department of Social Services was coming TODAY and not Monday as planned. I phoned Claudia and Dad. Dad was on his way and Claudia came right over too.
While we waited and before lunch, I played a game with mom that I made up called, “The Home Game.” In preparation for mom’s homecoming, I asked her questions about her house.
“Do you go in the back or the front door at your house?” Mom said, “Back” (Correct)
“What room do you walk into?” Mom said, “My kitchen?” I said, “No…” Mom said, “My dining room? That’s silly!” (Correct)
“What’s in your dining room?” Mom said, “All dad’s junk!” (Correct!!) Then mom said, “It looks like Katherine and Zachary’s in West…West…” (they are mom’s mother’s cousins). Mom said, “There’s a china closet and half….uh…what do you call it?...on the right. China closet on the left and Grandma’s china closet.” (Correct)
“If you walk straight through the dining room, what’s there?” Mom said, “The living room and more of dad’s junk” (Correct) “A china closet on the right…” (Correct)
Claudia showed mom pictures of her and dad’s house next. Mom knew almost all the pictures. When Claudia showed mom a picture of their fireplace and mantle, mom said, “That’s in my house!!” and began to cry.
Mom ate lunch next and then the nurse from the D.O.S.S. came. All went well. There are many different programs available. Mom is going to get the Personal Care Aide program. This means that there is no cap on the expenses (in the Long Term, Lombardi program, there are caps so you sometimes have to prioritize needs and, as a result, not get some services, items…).
The program mom is going into has no cap. Mom will receive weekly visits from a nurse (or maybe more depending on mom’s needs). Mom will also get physical therapy (PT) at home as well. A physical therapist will come to the house to assess mom, then, based on mom’s abilities and needs, she will get a certain amount of service per week.
Mom will also get visits from a Personal Care Aide. This is different from a Home Health Aide. A Home Health Aide can legally/professionally do more like feed mom, apply creams or ointments for medicinal purposes… Mom is not getting this type of aide because this type of aide only comes with the Long Term care program. The nurse from D.O.S.S. did not feel mom needs this type of care. An aide would also be with mom for an 7 hour block of time straight like 7 a.m. through 3 p.m. This Long Term program costs less money per patient because there is a cap on the cost for services due to the fact that the premise is that the person will need the care until he or she dies.
Mom is getting the Personal Care Aide program which has no cap on services because the idea is that mom will eventually get better and better so the services, though more in cost, won’t theoretically last as long. With this program, mom gets physical therapy as needed and then she also gets visits from a nurse as needed. Mom will get a Personal Care Aide who can do things like bath her, shower her, dress her, make her bed, prepare meals… This Aide comes on whatever schedule we want. We will have the Aide from 8 a.m. through 11 a.m. and then again from 4 p.m. through 7 p.m. This way, the Aide can get mom ready for the day and then later, ready for bed. If we need more hours of service from her, we can get/could have gotten more. We can make changes to the program as needed once mom is home and any time thereafter. We can break the hours up any way we’d like or need.
It was recommended that mom get a hospital bed and not use the Temperpedic bed she has now. Medicaid pays for all the items/equipment mom needs. Medicare pays for the therapies like physical therapy. Medicaid pays for the nurse and the aide.
All in all, it can take up to 2 more weeks for mom to come home (worst case scenario) and up to 5 days in the best case scenario. We were told not to get our hopes up for her to be home for Thanksgiving because the services and availability of people next week will be sparse due to the holiday. We will have Thanksgiving at the facility with mom. We will have a 2 day notice of when mom is able to come home.
After the nurse, Anthony and Claudia left, mom and I played with the IPAD. Mom did the “Toy Story 3 Camouflage” app. This is like a hidden pictures game. You see a picture and get a written list of items to find. Mom used to LOVE doing these puzzles which motivated her now, however, she had a most difficult time with the task. She was only able to find 2 items independently. She also became frustrated and the fidgetiness began so I quickly changed activities.
Mom tried the “Super Why” app on the IPAD next. This one was so easy for her that she said, “Is this it? Are you kidding me?” I remember when she couldn’t do it at all a few months back! This app shows sentences and you find the missing word, or words and you find the missing letters.
Mom zipped through an app on FUNCTIONS next: “Show me the one that cleans the carpet” or “Touch the one that has four legs” or “Show me the one you sleep on.” A word jumble app followed. Mom LOVES words and word jumbles!! She zipped through this too!!! She unscrambled words like “Together, seven, full, try, light, today…” She lasted a long time with this app and loved it.
Mom did the “Inference Sentences” app next. It says aloud things like, “When your hair is a mess, use me to look your best. What am I?” (Mom: “Comb”). Mom did really great with these and zipped through them all saying, “This is too easy!”
We tried the Baseball Facts app which involves multiplication facts from 1-12 but it was too difficult for mom to do. She also tried the “tangrams” app and did well identifying where the pieces go but had difficulty getting the pieces to stay where they belong. Another app we tried was a puzzle one---you see the outline of a shape and the marked puzzle spots and then you move the pieces into the right place. This, too, was too hard for mom.
She became tired and asked me if there were any books to listen to. I showed her the titles and she selected, “The Hiding Place” by Corrie Ten Boom. However, she tired of listening easily (I forgot the headphones so it was hard for her to filter the sound). She asked for a movie next and selected, “Doubt.” Mom kept saying that she was supposed to play Meryl Streep’s part at the Playhouse (she was supposed to). She sat and watched the whole movie on the IPAD using headphones. I don’t think I ever saw her concentrate so much on a movie!!! EVER!
Mom’s friend, Maureen, called and she and mom had a nice conversation. When Maureen asked mom if she is doing better with walking, mom said, “No, not really--walking is still precarious.” What an answer!!! Mom told us that Maureen is going to be traveling soon and told us where she was going too!
Mom continued to watch, “Doubt” and I left to go cook dinner around 5:30. It was good to be together with family today and be with mom and dad for the day.
Mom talked on the phone with Lenny tonight. He was on his way to a play at school. Mom also signed a card for Ava’s birthday which will be on Sunday.
Mom will soon be home……unbelievable.
“One more thing--please prepare a…room for me, for I am hoping that God will answer your prayers and let me return to you soon.”Philemon 1:22
Mom Update, November 17, 2011, Thursday
Mom’s update November 17, 2011
OK! I definitely need a vacation! I left mom this morning and I went to a school to consult. I walked into a classroom and sat down and opened up my laptop and found the student’s file where I type anecdotal notes. I started to type………Mom’s update November 17, 2011!!! Holy Mackerel! Can you believe it?!
Well with that being said, I started the day with mom and she was in a good mood. I did the usual, put her hearing aids in and put her glasses on. I set up her breakfast. I brought her low fat turkey kielbasa. I forgot to mention that when I arrived, mom was already in her wheelchair and sitting at her tray table. I spoke to her CNA and she said that she wanted to use the bathroom first thing in the morning, so they took her and got her ready for the day. I had to leave because I had to get to a school early today. (You know how that went!)
Anthony came to see mom. He said she was in a good mood. Mom stood 3 times with Anthony alone and then another 4 times with dad. Anthony worked on physical things today and he told her to turn the anger into motivation. She didn’t cry but when Anthony went to leave she asked, “Why do you have to leave?”
Dad came to see mom and did PT with her. The physical therapist has been coming to the room to work with dad and mom. Mom stood straight up 7 times in front of the PT. They walked in the hallway about 10 feet. Dad worked with the OT and PT to get mom out of bed. Mom lifted herself up and swung her legs off the bed and dad assisted her into the wheelchair. Mom did the pivot for him and the PT.
I came in the evening with Jean. Jean sang for mom and her roommate. He sang “Fly Me To The Moon” and Billy Joel’s “For The Longest Time.” They loved it and they both clapped. Jean came to drive dad home. He had told us he hasn’t been sleeping well and that he was tired, so since it was dark and rainy I thought he would appreciate being driven home.
Mom and I did a Life Skill worksheet. It was a “Weekend Calendar of Events” and questions regarding what events are on what night and how much did they cost, etc. I then did a 100 piece puzzle with mom. She was able to get a few pieces in the right place and when she did she would let out a squeal of excitement. Next, we played the “Logic Links” game. She did better than I have ever seen. She still needed prompting, but she was able to place a few chips in the correct spot.
The CNA’s came in to put mom to bed. I sat with her and watched “Chopped” on food network. She kept telling me to go home and that I didn’t look good, I looked tired! (thanks mom!) I turned off the sound on the TV and we reminisced. We spoke about when we were little and mom would take a pepper out of the garden and core out the stem and seeds and make a pepper cup which she filled with ice cold water. Then I asked her if she remembered the bus stop and she said, “Sure, across the street.” I asked her where I use to stand and she said, “In my coat!” She used to unbutton her coat and I would snuggle next to her and she would button up the coat over me. I also reminded her of how we use to pretend that her bed was a boat and we would close the windows on the boat to feel cozy, so before I put her to bed for the night, I closed the “windows” on the “boat” and she laughed. I said a prayer and then left for the night.
The next passage is from Kathy, she spoke to dad this morning and dad shared with her what he did with mom last night. I didn’t get a chance to call him last night.
~Claud
Dad reported that yesterday, he and mom did OT and PT together again. He was very excited to say that he did EVERYTHING involved in getting mom to the bathroom all alone!!! The OT only watched from afar but did not assist him or mom in any way. Mom also walked 10-15 feet using the walker, but she still won't stand up straight. Dad feels that the rug is difficult for mom to walk on (she catches her sneakers on the rug because she doesn't always lift her feet). Dad said that mom also tends to hold the walker too far out in front of her which then lends itself to her posture being stooped over rather than straight. Dad did say that mom is using her legs and feet much better this week compared to last week (Claudia has been working on the "Old School" methods we used to use on mom when she couldn't do much). Finally, Dad reported that he had mom stand from the wheelchair while holding the hallway wall rail 3 times and stand straight up ("belly to the wall" is our verbal prompt) for a count of 50 each time. Dad said, "I also try to do things with mom when I'm there and not just sit around, but I can't do it like you kids do."
We are also working on trying to get dad to allow mom to emote...cry. Mom needs to cry. Crying is normal, natural and therapeutic but dad continually tells mom to "stop crying and smile." Claudia tried to explain it dad by saying, "Dad, remember the first summer when you were upset and cried really badly? We all came over to hold you and comfort you and to let you cry and get it out. Well, imagine what it would have been like for you, if we arrived and told you to stop crying and smile." Great analogy!! Mom herself had a bit of that type of philosophy at times too. I can remember her telling me many times growing up, "Never mind. Be a brave soldier" about this or that. But bottom line...they both need to cry. Crying is a tool of cleansing.
"I rise before dawn and cry for help; I have put my hope in your word." Psalm 119:147
OK! I definitely need a vacation! I left mom this morning and I went to a school to consult. I walked into a classroom and sat down and opened up my laptop and found the student’s file where I type anecdotal notes. I started to type………Mom’s update November 17, 2011!!! Holy Mackerel! Can you believe it?!
Well with that being said, I started the day with mom and she was in a good mood. I did the usual, put her hearing aids in and put her glasses on. I set up her breakfast. I brought her low fat turkey kielbasa. I forgot to mention that when I arrived, mom was already in her wheelchair and sitting at her tray table. I spoke to her CNA and she said that she wanted to use the bathroom first thing in the morning, so they took her and got her ready for the day. I had to leave because I had to get to a school early today. (You know how that went!)
Anthony came to see mom. He said she was in a good mood. Mom stood 3 times with Anthony alone and then another 4 times with dad. Anthony worked on physical things today and he told her to turn the anger into motivation. She didn’t cry but when Anthony went to leave she asked, “Why do you have to leave?”
Dad came to see mom and did PT with her. The physical therapist has been coming to the room to work with dad and mom. Mom stood straight up 7 times in front of the PT. They walked in the hallway about 10 feet. Dad worked with the OT and PT to get mom out of bed. Mom lifted herself up and swung her legs off the bed and dad assisted her into the wheelchair. Mom did the pivot for him and the PT.
I came in the evening with Jean. Jean sang for mom and her roommate. He sang “Fly Me To The Moon” and Billy Joel’s “For The Longest Time.” They loved it and they both clapped. Jean came to drive dad home. He had told us he hasn’t been sleeping well and that he was tired, so since it was dark and rainy I thought he would appreciate being driven home.
Mom and I did a Life Skill worksheet. It was a “Weekend Calendar of Events” and questions regarding what events are on what night and how much did they cost, etc. I then did a 100 piece puzzle with mom. She was able to get a few pieces in the right place and when she did she would let out a squeal of excitement. Next, we played the “Logic Links” game. She did better than I have ever seen. She still needed prompting, but she was able to place a few chips in the correct spot.
The CNA’s came in to put mom to bed. I sat with her and watched “Chopped” on food network. She kept telling me to go home and that I didn’t look good, I looked tired! (thanks mom!) I turned off the sound on the TV and we reminisced. We spoke about when we were little and mom would take a pepper out of the garden and core out the stem and seeds and make a pepper cup which she filled with ice cold water. Then I asked her if she remembered the bus stop and she said, “Sure, across the street.” I asked her where I use to stand and she said, “In my coat!” She used to unbutton her coat and I would snuggle next to her and she would button up the coat over me. I also reminded her of how we use to pretend that her bed was a boat and we would close the windows on the boat to feel cozy, so before I put her to bed for the night, I closed the “windows” on the “boat” and she laughed. I said a prayer and then left for the night.
The next passage is from Kathy, she spoke to dad this morning and dad shared with her what he did with mom last night. I didn’t get a chance to call him last night.
~Claud
Dad reported that yesterday, he and mom did OT and PT together again. He was very excited to say that he did EVERYTHING involved in getting mom to the bathroom all alone!!! The OT only watched from afar but did not assist him or mom in any way. Mom also walked 10-15 feet using the walker, but she still won't stand up straight. Dad feels that the rug is difficult for mom to walk on (she catches her sneakers on the rug because she doesn't always lift her feet). Dad said that mom also tends to hold the walker too far out in front of her which then lends itself to her posture being stooped over rather than straight. Dad did say that mom is using her legs and feet much better this week compared to last week (Claudia has been working on the "Old School" methods we used to use on mom when she couldn't do much). Finally, Dad reported that he had mom stand from the wheelchair while holding the hallway wall rail 3 times and stand straight up ("belly to the wall" is our verbal prompt) for a count of 50 each time. Dad said, "I also try to do things with mom when I'm there and not just sit around, but I can't do it like you kids do."
We are also working on trying to get dad to allow mom to emote...cry. Mom needs to cry. Crying is normal, natural and therapeutic but dad continually tells mom to "stop crying and smile." Claudia tried to explain it dad by saying, "Dad, remember the first summer when you were upset and cried really badly? We all came over to hold you and comfort you and to let you cry and get it out. Well, imagine what it would have been like for you, if we arrived and told you to stop crying and smile." Great analogy!! Mom herself had a bit of that type of philosophy at times too. I can remember her telling me many times growing up, "Never mind. Be a brave soldier" about this or that. But bottom line...they both need to cry. Crying is a tool of cleansing.
"I rise before dawn and cry for help; I have put my hope in your word." Psalm 119:147
Wednesday, November 16, 2011
Mom Update, November 16, 2011, Wednesday, Addendum
I just hung up with the neurologist who said that evidently the way the EEG was explained incorrect and we were given “misinformation.” While there is no seizure activity, there IS slow wave activity which is consistent with the damage in that area of the brain---it is something you expect to see with the type of damage mom had to her brain. No medication…at this time at all. NONE is needed (thank God!)
The neurologist said that without looking at her, the neurologist can’t diagnose any reason for the problem but if mom becomes confused, disoriented, lethargic….following the fidgetiness, the neurologist said, “Then we have something to hang our hat on. But…she is OUR MIRACLE BABY!!! Leave her that way. She’s fine.” The neurologist said it could just be fidgetiness due to wanting to become, and becoming, more active—that is a strong possibility.
I asked the neurologist about mom having the general anesthesia to have the kidney stone procedure. The neurologist said that there is always a risk factor involved when anesthesia is used especially when a head injury is involved. However, the neurologist feels that it appears mom needs the procedure so she should be fine.
Thank God. “Let everything that has breath praise the Lord” Psalm 150:6
The neurologist said that without looking at her, the neurologist can’t diagnose any reason for the problem but if mom becomes confused, disoriented, lethargic….following the fidgetiness, the neurologist said, “Then we have something to hang our hat on. But…she is OUR MIRACLE BABY!!! Leave her that way. She’s fine.” The neurologist said it could just be fidgetiness due to wanting to become, and becoming, more active—that is a strong possibility.
I asked the neurologist about mom having the general anesthesia to have the kidney stone procedure. The neurologist said that there is always a risk factor involved when anesthesia is used especially when a head injury is involved. However, the neurologist feels that it appears mom needs the procedure so she should be fine.
Thank God. “Let everything that has breath praise the Lord” Psalm 150:6
Mom Update, November 16, 2011, Wednesday
Mom’s update November 16, 2011
Jean started the day with mom today. She was awake when he arrived. Mom was happy when she saw Jean. He put her hearing aids in and her glasses on. When he went to put the glasses on she grabbed them and said, “I can do it.” HE put on the TV and they watched Good Morning America and then Regis. Mom was interested in the fact that Regis is retiring on Friday. All week we have watched the show (or I have left it on for her to watch after I leave). Jean made mom’s oatmeal with apple sauce and Fiber One. Mom kept calling the Fiber One rabbit pellets! (That’s what Con and Anthony called them) She thought it was hysterical!
Anthony went to see mom. She was in a religious service. There was a lot of singing so the recreation therapist brought her to the service. When Anthony took her back to the room she was crying a lot when he came. She said she misses everybody. He told her to cry if she needs to cry. He took her for a walk near the windows to look out at the cars. He made her laugh. They called dad and mom spoke to her. Anthony was able to calm her down by making her laugh. Mom asked to go downstairs and Anthony said why and mom said why do you think and Anthony told her to tell him and she said to get pretzels. They sat at the end of the therapy hallway and watched people. They went
Dad came next and spent the day with mom. They watched TV and read the paper. Mom went to OT and PT.
John came next. He brought doughnuts for the staff. He brought mom a jelly doughnut for dessert and told her he had a surprise. She wanted it now but John said it is for dessert. John told her that we all fixed up her house for when she comes home. She said, “What house?” John said, “Your house.” Mom said she wasn’t going home to her house. She was confused. Dad pointed to the picture of her house and she said, “Oooooooh!” John was a little scared that she was confused. They talked and watched TV. Dinner came and John cut up her meal. She had Sloppy Joe’s and john took the roll away because he surprised her with a jelly doughnut for dessert. After dinner John played crosswords (It is a game where there are cubes with letters on them). Mom was getting frustrated because the letters that were facing up were too difficult to make a word so John turned the cubes to give her better letters and mom accused him of cheating! The CNA’s came to put mom to bed. John sat with her for a while longer and watched the food channel. He said a prayer and kissed her goodnight.
Peace and Be Well,
~Claud
Well...in the words of the late Gilda Radner playing "Rosanne Rosanna Danna," "It's always something!"
I spoke to the "attending physician" from mom's neurologist's office today regarding the EEG mom had last week. In short, the results are inconclusive at this point. The EEG came back abnormal. Though mom's EEG shows no signs of seizure activity (thank God), it DOES show "seizure-like spikes" (spikes look like the top of a triangle on the EEG scan sheet). A typical EEG scan sheet shows relatively even lines that wave in small waves. Mom's show even lines that wave AND places where the waves turn into 'triangle tops' or 'upside-down Vs.' I asked what this means exactly and the AP said that is undetermined at this point because an EEG only shows seizure activity. Other tests would be required in order to determine what is causing the "fidgetiness" or "tic-like" movements mom has been having. I asked if we should be concerned---the response was a question, "Well, how is she? How does she seem otherwise?" Mom seems great otherwise. I asked about medication---the answer was: "If she seems OK then no medication is needed. If not, then she may need some." I explained that we want to know: a) should we be worried? b) does she need medication? [because we don't want her on any unless she absolutely needs it] c) what could be causing the movements/fidgetiness/tic-like movements? The more questions I asked, the more the AP couldn't answer. The AP said that mom has an appointment in the near future with the neurologist (Jan. 5). I pointed out that January 5 is a long way off. The AP said mom could go on a waiting list for an appointment that is closer---she is not an emergency now.
I also left a message with the AP for the neurologist regarding the blasting of the kidney stone and the fact that mom will need general anesthesia to do this. The AP finally said that the neurologist will call me directly either later tonight or tomorrow.
Dad also received information regarding the procedure to blast mom's kidney stone. It said that mom is scheduled for December 5 to have the stone blasted (through sound waves). Evidently, the urologist scheduled it already, even though the urologist said there was no hurry, we could wait 2 months or so, and I could consult with the neurologist first. So much for all that. I called the hospital where it will take place and explained the concern over speaking to the neurologist as well as not knowing if mom will be home or at the facility still by December 5....I can call them back Monday or Tuesday after we speak to the Nurse from the Department of Social Services on Monday regarding mom's discharge.
"It is good to proclaim your unfailing love in the morning, your faithfulness in the evening." Psalm 92:2
Jean started the day with mom today. She was awake when he arrived. Mom was happy when she saw Jean. He put her hearing aids in and her glasses on. When he went to put the glasses on she grabbed them and said, “I can do it.” HE put on the TV and they watched Good Morning America and then Regis. Mom was interested in the fact that Regis is retiring on Friday. All week we have watched the show (or I have left it on for her to watch after I leave). Jean made mom’s oatmeal with apple sauce and Fiber One. Mom kept calling the Fiber One rabbit pellets! (That’s what Con and Anthony called them) She thought it was hysterical!
Anthony went to see mom. She was in a religious service. There was a lot of singing so the recreation therapist brought her to the service. When Anthony took her back to the room she was crying a lot when he came. She said she misses everybody. He told her to cry if she needs to cry. He took her for a walk near the windows to look out at the cars. He made her laugh. They called dad and mom spoke to her. Anthony was able to calm her down by making her laugh. Mom asked to go downstairs and Anthony said why and mom said why do you think and Anthony told her to tell him and she said to get pretzels. They sat at the end of the therapy hallway and watched people. They went
Dad came next and spent the day with mom. They watched TV and read the paper. Mom went to OT and PT.
John came next. He brought doughnuts for the staff. He brought mom a jelly doughnut for dessert and told her he had a surprise. She wanted it now but John said it is for dessert. John told her that we all fixed up her house for when she comes home. She said, “What house?” John said, “Your house.” Mom said she wasn’t going home to her house. She was confused. Dad pointed to the picture of her house and she said, “Oooooooh!” John was a little scared that she was confused. They talked and watched TV. Dinner came and John cut up her meal. She had Sloppy Joe’s and john took the roll away because he surprised her with a jelly doughnut for dessert. After dinner John played crosswords (It is a game where there are cubes with letters on them). Mom was getting frustrated because the letters that were facing up were too difficult to make a word so John turned the cubes to give her better letters and mom accused him of cheating! The CNA’s came to put mom to bed. John sat with her for a while longer and watched the food channel. He said a prayer and kissed her goodnight.
Peace and Be Well,
~Claud
Well...in the words of the late Gilda Radner playing "Rosanne Rosanna Danna," "It's always something!"
I spoke to the "attending physician" from mom's neurologist's office today regarding the EEG mom had last week. In short, the results are inconclusive at this point. The EEG came back abnormal. Though mom's EEG shows no signs of seizure activity (thank God), it DOES show "seizure-like spikes" (spikes look like the top of a triangle on the EEG scan sheet). A typical EEG scan sheet shows relatively even lines that wave in small waves. Mom's show even lines that wave AND places where the waves turn into 'triangle tops' or 'upside-down Vs.' I asked what this means exactly and the AP said that is undetermined at this point because an EEG only shows seizure activity. Other tests would be required in order to determine what is causing the "fidgetiness" or "tic-like" movements mom has been having. I asked if we should be concerned---the response was a question, "Well, how is she? How does she seem otherwise?" Mom seems great otherwise. I asked about medication---the answer was: "If she seems OK then no medication is needed. If not, then she may need some." I explained that we want to know: a) should we be worried? b) does she need medication? [because we don't want her on any unless she absolutely needs it] c) what could be causing the movements/fidgetiness/tic-like movements? The more questions I asked, the more the AP couldn't answer. The AP said that mom has an appointment in the near future with the neurologist (Jan. 5). I pointed out that January 5 is a long way off. The AP said mom could go on a waiting list for an appointment that is closer---she is not an emergency now.
I also left a message with the AP for the neurologist regarding the blasting of the kidney stone and the fact that mom will need general anesthesia to do this. The AP finally said that the neurologist will call me directly either later tonight or tomorrow.
Dad also received information regarding the procedure to blast mom's kidney stone. It said that mom is scheduled for December 5 to have the stone blasted (through sound waves). Evidently, the urologist scheduled it already, even though the urologist said there was no hurry, we could wait 2 months or so, and I could consult with the neurologist first. So much for all that. I called the hospital where it will take place and explained the concern over speaking to the neurologist as well as not knowing if mom will be home or at the facility still by December 5....I can call them back Monday or Tuesday after we speak to the Nurse from the Department of Social Services on Monday regarding mom's discharge.
"It is good to proclaim your unfailing love in the morning, your faithfulness in the evening." Psalm 92:2
Tuesday, November 15, 2011
Mom Update, November 15, 2011, Tuesday
Mom’s update November 15, 2011
I started the day as usual with mom. I was late this morning because I had no gas in the car and I also had to stop at an ATM. I didn’t get there until a little after 8. When I walked in the room mom was lying peacefully in her bed just waking up. I walked in and mom’s eyes lit up. She started to cry and said she was so happy to see me. I fixed her in the bed. I put her hearing aids in and cleaned her glasses. I set up her breakfast and made her oatmeal. I brought her low fat turkey kielbasa. She loved it and ate all her breakfast. Time passed quickly and before I knew it I had to leave for work.
Anthony came next. He came straight from fixing his van. He had to leave it on the side of the road last night when it broke down. Anthony came and mom was still in bed. She was in bed late this morning and at 10:30 she was taken to the shower. Anthony left to get tissues for mom at Target. When he came back he passed the shower and mom was sitting outside the shower in the hall. When she saw Anthony she started to cry. Anthony asked her what was the matter and she said, “I don’t have anything on and I am in the hallway!” The CNA yelled from the shower that she had a towel on. Anthony tried to comfort mom by telling her she was all covered up and that no one was in the hallway, but he was very upset. We reported the CNA to the nursing supervisor, but I really wonder if they do anything or if they do, will she take it out on mom? Anthony sat with mom and shortly after, PT came to get her. Anthony left and dad came before mom was back form PT/OT.
Dad stayed with mom all day. They watched TV and read the paper. Mom gave dad an article in the paper about fire laws and firemen. I was back by mom in the late afternoon after work. I brought mom veggie straws. I had chicken soup. Mom wrote in her journal that a doctor came by and told her she was going home next week. I asked dad but he said no one came. I don’t know where she got that from. I did four life skill worksheets with her. She did well on the first few, but as the evening went on it was harder and harder for her to do the work. It isn’t the questions as much as where to put answers or writing the wrong letters when writing words. Dinner came and she had a grilled ham and cheese sandwich and green beans. She ate some of her fruit. I gave mom a movie book that Aunt Lucy gave us. It was full of black and white photos of old movie actors and actresses. It was just the thing for mom to do to come down from the rough mental activity we were doing before dinner. She guessed a few of the actors and then read the ones she didn’t know. She was placed into bed and I stayed with her at her side. I said a prayer and kissed her goodnight.
Peace and Be Well,
~Claud
I started the day as usual with mom. I was late this morning because I had no gas in the car and I also had to stop at an ATM. I didn’t get there until a little after 8. When I walked in the room mom was lying peacefully in her bed just waking up. I walked in and mom’s eyes lit up. She started to cry and said she was so happy to see me. I fixed her in the bed. I put her hearing aids in and cleaned her glasses. I set up her breakfast and made her oatmeal. I brought her low fat turkey kielbasa. She loved it and ate all her breakfast. Time passed quickly and before I knew it I had to leave for work.
Anthony came next. He came straight from fixing his van. He had to leave it on the side of the road last night when it broke down. Anthony came and mom was still in bed. She was in bed late this morning and at 10:30 she was taken to the shower. Anthony left to get tissues for mom at Target. When he came back he passed the shower and mom was sitting outside the shower in the hall. When she saw Anthony she started to cry. Anthony asked her what was the matter and she said, “I don’t have anything on and I am in the hallway!” The CNA yelled from the shower that she had a towel on. Anthony tried to comfort mom by telling her she was all covered up and that no one was in the hallway, but he was very upset. We reported the CNA to the nursing supervisor, but I really wonder if they do anything or if they do, will she take it out on mom? Anthony sat with mom and shortly after, PT came to get her. Anthony left and dad came before mom was back form PT/OT.
Dad stayed with mom all day. They watched TV and read the paper. Mom gave dad an article in the paper about fire laws and firemen. I was back by mom in the late afternoon after work. I brought mom veggie straws. I had chicken soup. Mom wrote in her journal that a doctor came by and told her she was going home next week. I asked dad but he said no one came. I don’t know where she got that from. I did four life skill worksheets with her. She did well on the first few, but as the evening went on it was harder and harder for her to do the work. It isn’t the questions as much as where to put answers or writing the wrong letters when writing words. Dinner came and she had a grilled ham and cheese sandwich and green beans. She ate some of her fruit. I gave mom a movie book that Aunt Lucy gave us. It was full of black and white photos of old movie actors and actresses. It was just the thing for mom to do to come down from the rough mental activity we were doing before dinner. She guessed a few of the actors and then read the ones she didn’t know. She was placed into bed and I stayed with her at her side. I said a prayer and kissed her goodnight.
Peace and Be Well,
~Claud
Mom Update, November 14, 2011, Monday
Mom’s Update November 14, 2011
I love walking in the room and seeing mom’s eyes light up! As soon as she sees me she says, “Oh! I am so happy to see you!” and then she cries. Of course I said my usual, “Morning, morning glory!” I fixed her in the bed and then cleaned her ears before I put the hearing aides in. I left to get her ice water. Every morning it’s the same. I get her ice water and she drinks it and tells me that they have the best water. Breakfast came and I set up her oatmeal. Mom ate all her breakfast. I spoke with her nurse about how much better she is doing with standing up independently. I also said that we noticed if you don’t touch her she will do things more independently, but if you hold her in the back she lets you do all the work. The nurse said she has to work on pivoting. She isn’t lifting up her feet to pivot. I am hoping that it will come in time like everything else. When she was first put on the Sarita lift she had a difficult time, but with practice and constant repetition she started to stand by herself.
After breakfast I told mom we were gonna “kick it old school!” We did our leg exercises that we did every day for a year. I held the heel of her foot in my hand with the toes pointing up and then one hand under her knee. I pushed her heel in toward her body and lifted her knee. We did ten on each leg. I then put a ball under her knee and had her lift her leg up slowly. She wants to bounce quickly, but slow and controlled is better. I then modeled for her how to pivot. I stood next to the bed and said, “Left, right, left pivot” as I moved from her bed to her wheel chair. I placed a ball under each leg. I then gave her the direction to lift her left leg up and then down touch the bed, THEN lift her right leg up and down to the bed THEN left leg up and down. She wanted to scissor kick and I had to hold her leg still for a moment before she lifted the other leg. It was a lot more difficult for her than I had thought it would have been. We practiced over and over again until she was able to lift one leg and then keep it still while she lifted the other. She was very determined. I then did some exercises with the big blue ball. She walked it up and down her arm. Mom had to go to the bathroom and I thought it would be a good time to apply what we did. I put her shoes and socks on and got her ready to get out of bed. Mom had a very difficult time. I gave her the same cues, but she had a very difficult time pivoting. I wheeled her into the bathroom and she stood at the bar straight up but also couldn’t pivot. I know it will come in time.
I left this morning and stopped in to the see the social worker. I asked her for two prescriptions for her wheel chair and the lifting recliner. She told me that the nurse from social services is coming Monday the 21st to evaluate mom. She decides if mom gets the Lombardi Program (it is like an at home nursing facility) or just a home health aide for a predetermined amount of hours a week. I don’t know how soon she will be released after she is evaluated. I left worrying if mom is actually ready to leave because she still isn’t pivoting to get in her chair. I wonder if we can do it, but I want her home so bad.
Anthony came next. Mom was at OT. He went downstairs by the OT room and peaked in and saw mom. He sat at the end of the hallway waiting for her. The head of the facility came down to OT and wheeled mom out when she was done. They all went to the computer room and the head of the facility showed mom his daughter singing on the internet. THey talked about family and visited for a while. Anthony went upstairs with mom and lunch came.
Kathy went to see mom. She walked in and mom was happy to see her. She grabbed the newspaper on the bed and handed it to Kathy and said, “This is for you and Claudia.” It was an article on changing special education laws (I am crying typing this). Mom was forever cutting out articles and leaving them in my mailbox about autism or special education. I found one recently and smiled. She had ripped it out of the paper and put it on the side for us. She talked to Kathy about Jean. She told Kathy she was up late last night eating potato chips (I can’t see how unless dad gave her some or she dreamt it) and Kathy asked if she remembered when Jean was little and hid potato chips in his book shelf. Dad went to my house to babysit and Pop said he was hungry so Jean said, “Pop come here” and took him to his bedroom and removed some books form his book case and took out a bag of chips!!!
Sam, Con and Anthony Michael went to see mom but they got stuck on the side of the road on North Ocean Avenue. They had to be picked up by Anthony. They still went to see mom for a little while. Mom was so happy to see them and cried when she saw them. They left because Anthony had to get back to work and figure out what to do with the car. Dad put mom to bed.
"I sought the lord, and he answered me; He delivered me from all my fears." Psalm 34:4
Peace and Be Well,
~Claud
I love walking in the room and seeing mom’s eyes light up! As soon as she sees me she says, “Oh! I am so happy to see you!” and then she cries. Of course I said my usual, “Morning, morning glory!” I fixed her in the bed and then cleaned her ears before I put the hearing aides in. I left to get her ice water. Every morning it’s the same. I get her ice water and she drinks it and tells me that they have the best water. Breakfast came and I set up her oatmeal. Mom ate all her breakfast. I spoke with her nurse about how much better she is doing with standing up independently. I also said that we noticed if you don’t touch her she will do things more independently, but if you hold her in the back she lets you do all the work. The nurse said she has to work on pivoting. She isn’t lifting up her feet to pivot. I am hoping that it will come in time like everything else. When she was first put on the Sarita lift she had a difficult time, but with practice and constant repetition she started to stand by herself.
After breakfast I told mom we were gonna “kick it old school!” We did our leg exercises that we did every day for a year. I held the heel of her foot in my hand with the toes pointing up and then one hand under her knee. I pushed her heel in toward her body and lifted her knee. We did ten on each leg. I then put a ball under her knee and had her lift her leg up slowly. She wants to bounce quickly, but slow and controlled is better. I then modeled for her how to pivot. I stood next to the bed and said, “Left, right, left pivot” as I moved from her bed to her wheel chair. I placed a ball under each leg. I then gave her the direction to lift her left leg up and then down touch the bed, THEN lift her right leg up and down to the bed THEN left leg up and down. She wanted to scissor kick and I had to hold her leg still for a moment before she lifted the other leg. It was a lot more difficult for her than I had thought it would have been. We practiced over and over again until she was able to lift one leg and then keep it still while she lifted the other. She was very determined. I then did some exercises with the big blue ball. She walked it up and down her arm. Mom had to go to the bathroom and I thought it would be a good time to apply what we did. I put her shoes and socks on and got her ready to get out of bed. Mom had a very difficult time. I gave her the same cues, but she had a very difficult time pivoting. I wheeled her into the bathroom and she stood at the bar straight up but also couldn’t pivot. I know it will come in time.
I left this morning and stopped in to the see the social worker. I asked her for two prescriptions for her wheel chair and the lifting recliner. She told me that the nurse from social services is coming Monday the 21st to evaluate mom. She decides if mom gets the Lombardi Program (it is like an at home nursing facility) or just a home health aide for a predetermined amount of hours a week. I don’t know how soon she will be released after she is evaluated. I left worrying if mom is actually ready to leave because she still isn’t pivoting to get in her chair. I wonder if we can do it, but I want her home so bad.
Anthony came next. Mom was at OT. He went downstairs by the OT room and peaked in and saw mom. He sat at the end of the hallway waiting for her. The head of the facility came down to OT and wheeled mom out when she was done. They all went to the computer room and the head of the facility showed mom his daughter singing on the internet. THey talked about family and visited for a while. Anthony went upstairs with mom and lunch came.
Kathy went to see mom. She walked in and mom was happy to see her. She grabbed the newspaper on the bed and handed it to Kathy and said, “This is for you and Claudia.” It was an article on changing special education laws (I am crying typing this). Mom was forever cutting out articles and leaving them in my mailbox about autism or special education. I found one recently and smiled. She had ripped it out of the paper and put it on the side for us. She talked to Kathy about Jean. She told Kathy she was up late last night eating potato chips (I can’t see how unless dad gave her some or she dreamt it) and Kathy asked if she remembered when Jean was little and hid potato chips in his book shelf. Dad went to my house to babysit and Pop said he was hungry so Jean said, “Pop come here” and took him to his bedroom and removed some books form his book case and took out a bag of chips!!!
Sam, Con and Anthony Michael went to see mom but they got stuck on the side of the road on North Ocean Avenue. They had to be picked up by Anthony. They still went to see mom for a little while. Mom was so happy to see them and cried when she saw them. They left because Anthony had to get back to work and figure out what to do with the car. Dad put mom to bed.
"I sought the lord, and he answered me; He delivered me from all my fears." Psalm 34:4
Peace and Be Well,
~Claud
Monday, November 14, 2011
Mom Update, November 13, 2011, Sunday
Moms’ Update, November 13th, 2011
I can’t imagine what it will be like not driving a half hour (or more) to see mom in the morning. I will still help in the morning, but mom is 4 minutes down the road from me. We will have a new routine I’m sure. My mom is and always will be a “Worry wart.” One of her favorite sayings would be, “Oh now I have something else to worry about!” In a way, she has passed this down to all of us. I should be excited to have her come home and instead I am worried that it won’t really happen. I am afraid to be excited. We have been so close to major breakthroughs before and then something happens; urinary tract infections, fluid on the brain, decanulation. My husband reminds me all the time that I tend to be negative. He means well and tries to have me see the positive side of situations. This is why I love him so much! It makes for a healthy mix of positives and negatives!
Today I started the day as usual. I said my usual, “Good Morning Morning Glory!” I fixed mom in the bed, put hearing aids in, cleaned her glasses and put them on, etc. I brought mom her Sunday morning special breakfast of a ham and cheese omelet and home fries. Of course she told me that I spoil her! Just then her old CNA came into the room and mom’s eyes lit up. “I thought you moved to another floor and weren’t coming back?” she said. She remembered! Her memory is so weird. She will ask me a million times what I brought her for breakfast or where I bought it but then she remembers that her CNA left.
After breakfast, mom had to use the bathroom. She was so adamant about getting out of bed that I started the process as we waited for the CNA. I put her shoes and socks on and removed the side bumper. She grabbed onto the side rail and swung her leg off the bed. I had all to do to call for the CNA and keep her from getting out of the bed by herself. I positioned the wheelchair and the nurse came in and helped me with the rest. Mom did great. When she was all done with the bathroom, washing her own face and brushing her teeth (I supervised but she did it by herself), she came out to start her day.
I told mom that I brought new worksheet and she rolled her eyes (to get a reaction) so I asked her if she wanted to work and she became serious and said yes. She likes to tease me. I borrowed some Life Skills workbooks from a friend of mine. They are as follows:
Publisher: Remedia Publications
Titles: Labels and Packages, The Newspaper, Survival Words, and Math at Home
Skills: Analyze information, apply information, classify information, follow directions, find relevant facts, make inferences, understand and use reference source, understand consumer information, use context clues, Use logic to solve problems (just to name a few)
We started with the labels and packages and she did very well. The hardest part of the worksheets is her organizational skills involved in learning (Executive Functions). She will read a question over and over and not move on to the next question or place the answer in the wrong spot. She did well with the questions but it did take thought. It wasn’t as easy as I thought it was going to be. Next we did The Newspaper worksheet. This was easy for her. Some of the questions were in regard to an index. It had a newspaper index and asked you where to find specific information. An example of one of the questions was, “Where would you look if you were planning a vacation?” The answer was the travel section on page 20. You needed to know that a vacation and travel go together. She knew every answer. We then moved on to the Math at Home worksheets. She had a very difficult time. We eventually had to give up and change to another activity. Here is a sample question that mom found extremely difficult:
To make six pancakes you need 1 cup of pancake mix and ¾ cup of water. How much will you need to make 12 pancakes?
___________________ cups of pancake mix ________________ cups of water
The whole concept of doubling the recipe was familiar but then actually doing it was impossible. She kept saying 12 cups of mix and had no idea how to double ¾ cup of water. She kept at it for a long time. I even took out the wipe off board and visually showed her, but she was very confused. I tried to get her to go on to another activity but she insisted on trying to understand. Finally she said let’s do something else. We went back to The Newspaper workbook. She read a fake article and answered questions. She did much better with specific “literal questions” that didn’t involve math.
I gave her a break and she wrote in her journal. She wrote what she had for breakfast and then about her morning. She wrote – “Claudia came early and she made me go through workbook questions and I felt very insecure because I didn’t get all the answers. I have to go to the potty now and Claudia is going for some assistance. I’ll be so happy when I can do this by myself. ___ is my aide and she’s a pest but a lovable pest.” When talking about writing a book she told her aide that she wants her name to be “Tanisha” and then laughed. She wrote in her journal, “Tanisha is her name.”
I put The Mary Tyler Moore show on for mom on DVD. She was laughing and having a good time. She said, “That was a REAL show, not like now.”
Anthony, Con and Anthony Michael came and we all watched Mary Tyler Moore and laughed. Anthony read her journal and said, “Write something about me.” Mom wrote, “Something about Anthony” in her journal and laughed! Then she wrote, “Anthony is so good looking all the nurse’s (like him)” She cracks me up!
Mom’s lunch came and she had – sweet potato, ham and pineapple and Brussels sprouts. Con said to mom, “What did Ava call these?” (Brussels sprouts) Mom said, “Broccoli balls!” Con cut up mom’s food and prepared the lunch for her. Con, Anthony, and Anthony Michael stayed with mom for the afternoon. They spoke about taking mom outside. I am sure Anthony worked on mom’s legs.
Terry came later in the afternoon to stay with mom. She always brings great DVD movies and her nook color to work with mom. Terry stayed with mom until dad arrived. Dad and Kathy went upstate last night and into today to shut off the water before it freezes up there. They almost hit a bear last night. When I told mom the story she said, “Oh dad and Kathy exaggerate!”
Peace and Be Well,
~Claud
I can’t imagine what it will be like not driving a half hour (or more) to see mom in the morning. I will still help in the morning, but mom is 4 minutes down the road from me. We will have a new routine I’m sure. My mom is and always will be a “Worry wart.” One of her favorite sayings would be, “Oh now I have something else to worry about!” In a way, she has passed this down to all of us. I should be excited to have her come home and instead I am worried that it won’t really happen. I am afraid to be excited. We have been so close to major breakthroughs before and then something happens; urinary tract infections, fluid on the brain, decanulation. My husband reminds me all the time that I tend to be negative. He means well and tries to have me see the positive side of situations. This is why I love him so much! It makes for a healthy mix of positives and negatives!
Today I started the day as usual. I said my usual, “Good Morning Morning Glory!” I fixed mom in the bed, put hearing aids in, cleaned her glasses and put them on, etc. I brought mom her Sunday morning special breakfast of a ham and cheese omelet and home fries. Of course she told me that I spoil her! Just then her old CNA came into the room and mom’s eyes lit up. “I thought you moved to another floor and weren’t coming back?” she said. She remembered! Her memory is so weird. She will ask me a million times what I brought her for breakfast or where I bought it but then she remembers that her CNA left.
After breakfast, mom had to use the bathroom. She was so adamant about getting out of bed that I started the process as we waited for the CNA. I put her shoes and socks on and removed the side bumper. She grabbed onto the side rail and swung her leg off the bed. I had all to do to call for the CNA and keep her from getting out of the bed by herself. I positioned the wheelchair and the nurse came in and helped me with the rest. Mom did great. When she was all done with the bathroom, washing her own face and brushing her teeth (I supervised but she did it by herself), she came out to start her day.
I told mom that I brought new worksheet and she rolled her eyes (to get a reaction) so I asked her if she wanted to work and she became serious and said yes. She likes to tease me. I borrowed some Life Skills workbooks from a friend of mine. They are as follows:
Publisher: Remedia Publications
Titles: Labels and Packages, The Newspaper, Survival Words, and Math at Home
Skills: Analyze information, apply information, classify information, follow directions, find relevant facts, make inferences, understand and use reference source, understand consumer information, use context clues, Use logic to solve problems (just to name a few)
We started with the labels and packages and she did very well. The hardest part of the worksheets is her organizational skills involved in learning (Executive Functions). She will read a question over and over and not move on to the next question or place the answer in the wrong spot. She did well with the questions but it did take thought. It wasn’t as easy as I thought it was going to be. Next we did The Newspaper worksheet. This was easy for her. Some of the questions were in regard to an index. It had a newspaper index and asked you where to find specific information. An example of one of the questions was, “Where would you look if you were planning a vacation?” The answer was the travel section on page 20. You needed to know that a vacation and travel go together. She knew every answer. We then moved on to the Math at Home worksheets. She had a very difficult time. We eventually had to give up and change to another activity. Here is a sample question that mom found extremely difficult:
To make six pancakes you need 1 cup of pancake mix and ¾ cup of water. How much will you need to make 12 pancakes?
___________________ cups of pancake mix ________________ cups of water
The whole concept of doubling the recipe was familiar but then actually doing it was impossible. She kept saying 12 cups of mix and had no idea how to double ¾ cup of water. She kept at it for a long time. I even took out the wipe off board and visually showed her, but she was very confused. I tried to get her to go on to another activity but she insisted on trying to understand. Finally she said let’s do something else. We went back to The Newspaper workbook. She read a fake article and answered questions. She did much better with specific “literal questions” that didn’t involve math.
I gave her a break and she wrote in her journal. She wrote what she had for breakfast and then about her morning. She wrote – “Claudia came early and she made me go through workbook questions and I felt very insecure because I didn’t get all the answers. I have to go to the potty now and Claudia is going for some assistance. I’ll be so happy when I can do this by myself. ___ is my aide and she’s a pest but a lovable pest.” When talking about writing a book she told her aide that she wants her name to be “Tanisha” and then laughed. She wrote in her journal, “Tanisha is her name.”
I put The Mary Tyler Moore show on for mom on DVD. She was laughing and having a good time. She said, “That was a REAL show, not like now.”
Anthony, Con and Anthony Michael came and we all watched Mary Tyler Moore and laughed. Anthony read her journal and said, “Write something about me.” Mom wrote, “Something about Anthony” in her journal and laughed! Then she wrote, “Anthony is so good looking all the nurse’s (like him)” She cracks me up!
Mom’s lunch came and she had – sweet potato, ham and pineapple and Brussels sprouts. Con said to mom, “What did Ava call these?” (Brussels sprouts) Mom said, “Broccoli balls!” Con cut up mom’s food and prepared the lunch for her. Con, Anthony, and Anthony Michael stayed with mom for the afternoon. They spoke about taking mom outside. I am sure Anthony worked on mom’s legs.
Terry came later in the afternoon to stay with mom. She always brings great DVD movies and her nook color to work with mom. Terry stayed with mom until dad arrived. Dad and Kathy went upstate last night and into today to shut off the water before it freezes up there. They almost hit a bear last night. When I told mom the story she said, “Oh dad and Kathy exaggerate!”
Peace and Be Well,
~Claud
Sunday, November 13, 2011
Mom Update, November 12, 2011, Saturday
When I pulled into the parking lot this morning and got out of the car, I thought about where I was and why…cognitively. Most of the time, for me, I go on “auto-pilot” here. I don’t think too deeply about being here to see mom because this is or has been where she has lived for the last 17 months. At least now, there seems to be a light at the end of the tunnel, thank the Lord. But it wasn’t always the case. For over a year, mom’s health ebbed and flowed…flunctuated up and down… two steps forward and 4 steps back. We didn’t know if she would ever come off the vent and often questioned the approach taken by the head of respiratory here.
When I arrived this morning, mom was slouched over to one side of the bed and couldn’t reach her food too well. Her glasses were still sitting on the nightstand and her hearing aids were not in. If we don’t prepare mom, no one does. The philosophy seems to be one of “hit or miss” --- if the patient can reach his/her food, great; if not, oh well.
Mom asked where dad is this morning and I told her that everyone is at their house preparing for her homecoming. Mom asked what there was to prepare and I told her dad is a pile maker---leave an open space and he will make a pile on it. Then mom said, “Well you know dad. He’s a pilot. Pile-it here and pile-it there!!! I love him. I love him dearly. If somebody ever asks what my husband does…I’ll say he’s a pilot!!”
Then mom said, “Who’s not here anymore?” and then mom mentioned her CNA’s name who was moved to another unit. She instructed me to take out clothes for her to wear today as if I don’t know the morning routine and drill already!!
She asked where Claudia was and I told her to call her so she did (I dialed and handed her the phone). Claudia told mom that they were getting things ready at her house for her big homecoming and that mom would have to learn to trust other people will do things for her and do them well. Mom said, “Never mind! You do them the way I WANT THEM TO BE DONE!!!” and laughed. Mom was a bit of a control freak---neat-nick in the past to say the least!!
Mom then asked about all the people in my past---people I don’t see and haven’t mentioned in months. She remembered the whole “cast of characters!!” and all their names too!! Mom was really cognizant and “with it” this morning.
Samantha called mom next and mom talked and talked to her!! Mom told her to give Anthony Michael a big kiss. Sammy told mom she would make her breakfast when she comes home and mom said she wanted pancakes!! I bet!!! We don’t let her eat carbs for breakfast anymore---all protein and high fiber!! When they hung up, mom said, “Oh Sammy is such a sweetheart!”
I had mom write in the journal next. I told mom that the book she and I and Claudia are writing about her and her recovery may have a publisher soon! Mom was excited!! Then she said, laughing, “Oh but you can’t use my real name!” I told her she could pick an alias---she said, “Amanda Fritag. She’s a real person though and she’s on the Food Channel!!”
When mom needed to use the bathroom, I began to get her ready to get out of bed by putting on her shoes and socks. Mom said, “Go get my clothes to wear. And use the shoe horn on the right side of my foot not the left. Hey, you know what? I’d be a great ‘Lady of the House.’ I could tell everybody what to do and how to do it correctly!”
I found a card and picture that mom made for dad yesterday for Veteran’s Day. It was so cute! She drew a fire truck and the firehouse (Dad is a volunteer fireman for the last 55 years or so!!). The card read: “Happy Veterans Day! I love you! Love your Dotty. This is just a little something for you.”
This is what mom wrote in her journal so far today:
“Nov 12 (2011)
Tomorro is Elisa’s Bday. Sammy just called me and told me that they are getting my house ready for when I get home. U’ O!!! I’m getting reade (ready) for me to go to the bathroom. Talk to u I am writing this under duress and I am watching Kahy make c bace (make a face) because she is eating a sour apple (well each to his own taste owne taste!) I’m going to get a shower right now, and I cand (can’t) be bohered (bothered) writing any more about my exxting (exciting) life here. I have to go now because daddy is going”
We tried a crossword puzzle next:
Clue: Qualified. Starts with an E Mom: Eligible
Clue: Writing surface Mom: Desk (wrong answer though)
Clue: Illinois state flower - starts with V Mom: Verbina (answer Violet)
Clue: Frosting effect Mom: Icing
Mom sets out to complete the crossword with great attention and perseverance. She holds tightly to a pencil in her right hand and asks for a better eraser. She skims through all the clues to find one she knows…but then she can’t seem to find her place on the crossword board in order to write the answers.
Mom’s CNA who was moved to a new wing came to visit mom today!!! Mom was thrilled to see the CNA!! Mom asked the CNA where she was working now, what floor, what the patients are like. Very good questions! Mom asked the CNA who the CNA likes better, mom or the new patients!! Mom asked about what it was like for her to be in that unit. She asked if she slept a lot when she was there and I said yes. Mom said, “Well what a waste of time that was. I could have been enjoying all of you.” Mom also said that, “Home is where my family is.”
While mom and I sat doing the crossword puzzle, here’s what was going on at home. “Meanwhile, back at the ranch….” Oh boy!! Anthony, Con, Samantha, John, Jean, Lenny, Claudia and dad moved furniture all over the place. They rearranged the bedroom furniture—moving some around and taking some to other rooms and moving some into the basement. They purchased the special, long shower chair for mom to slide on into the shower---and in so doing, showed dad that the shower doors have to be removed in order for the chair to fit. This meant running to the storage store to get bubble wrap to wrap the doors in and then running to the store to buy a shower curtain and rod in their place (dad grabbed some old metal rod from the garage to screw into the tub surround!!! Oh boy….they talked him out of it). They had to rearrange the living room, the small back computer room, the bedroom. They had to clean up under the awning out by the back door. They had to put all valuables (jewelry…) and the jewelry boxes and anything with a social security or account number on it away---preferably locked up because we will have a stranger (CNA) in the house soon and why tempt someone to do something wrong? They began around 9 a.m. this morning. The job was overwhelming.
Mom had me put her make up on and then she ate lunch. It was a plain swiss cheese on rye sandwich with tomato salad and peaches. I gave mom a small piece of tomato on a fork and put it in her mouth. I was afraid she would choke on the vinegar. I told her this and she mimicked choking---such a comedian!! She also complained, “What are you going to FEED ME?!!!!” outraged!! She has come so far this past year…
We made more phone calls after lunch—Aunt Carol (mom said it was soooo good to talk on the phone with her again—they used to talk for hours on the phone), Angelo, Madeline, Jo Ann, Anthony, Sam, Dad, and then---cousin Tommy! I texted Tommy to let him know we would be calling from the facility. When mom called, Tommy said, “Do you know who this is?” Mom said, “Of course stupid, I called you!” Tommy used to practically live at our house growing up. Mom teased him and laughed and talked. She also called Tommy’s mom, Madeline, but only got the answering machine.
Mom and I went for a walk downstairs next. I bought her some chips since it’s Saturday --- a treat!! Mom kept asking me for her pocketbook so that she could get some money to buy things for me. We visited all the people on mom’s old unit. As always, they were happy to see her. We went back upstairs then and listened to music on the IPAD and sang together. Mom's roommate said she only likes music from the 30s and 40s so I played those songs. Mom and I sang but then she fell asleep.
Terry came to spend the evening with mom. She brought her NOOK Color to play games on with mom. They also watch TV together and talk too. Dad visited mom briefly late in the afternoon. He and I left to go upstate to shut off all the water for the winter.......boo hoo.....!
“I am going to prepare a place for you…” John 14:2
When I arrived this morning, mom was slouched over to one side of the bed and couldn’t reach her food too well. Her glasses were still sitting on the nightstand and her hearing aids were not in. If we don’t prepare mom, no one does. The philosophy seems to be one of “hit or miss” --- if the patient can reach his/her food, great; if not, oh well.
Mom asked where dad is this morning and I told her that everyone is at their house preparing for her homecoming. Mom asked what there was to prepare and I told her dad is a pile maker---leave an open space and he will make a pile on it. Then mom said, “Well you know dad. He’s a pilot. Pile-it here and pile-it there!!! I love him. I love him dearly. If somebody ever asks what my husband does…I’ll say he’s a pilot!!”
Then mom said, “Who’s not here anymore?” and then mom mentioned her CNA’s name who was moved to another unit. She instructed me to take out clothes for her to wear today as if I don’t know the morning routine and drill already!!
She asked where Claudia was and I told her to call her so she did (I dialed and handed her the phone). Claudia told mom that they were getting things ready at her house for her big homecoming and that mom would have to learn to trust other people will do things for her and do them well. Mom said, “Never mind! You do them the way I WANT THEM TO BE DONE!!!” and laughed. Mom was a bit of a control freak---neat-nick in the past to say the least!!
Mom then asked about all the people in my past---people I don’t see and haven’t mentioned in months. She remembered the whole “cast of characters!!” and all their names too!! Mom was really cognizant and “with it” this morning.
Samantha called mom next and mom talked and talked to her!! Mom told her to give Anthony Michael a big kiss. Sammy told mom she would make her breakfast when she comes home and mom said she wanted pancakes!! I bet!!! We don’t let her eat carbs for breakfast anymore---all protein and high fiber!! When they hung up, mom said, “Oh Sammy is such a sweetheart!”
I had mom write in the journal next. I told mom that the book she and I and Claudia are writing about her and her recovery may have a publisher soon! Mom was excited!! Then she said, laughing, “Oh but you can’t use my real name!” I told her she could pick an alias---she said, “Amanda Fritag. She’s a real person though and she’s on the Food Channel!!”
When mom needed to use the bathroom, I began to get her ready to get out of bed by putting on her shoes and socks. Mom said, “Go get my clothes to wear. And use the shoe horn on the right side of my foot not the left. Hey, you know what? I’d be a great ‘Lady of the House.’ I could tell everybody what to do and how to do it correctly!”
I found a card and picture that mom made for dad yesterday for Veteran’s Day. It was so cute! She drew a fire truck and the firehouse (Dad is a volunteer fireman for the last 55 years or so!!). The card read: “Happy Veterans Day! I love you! Love your Dotty. This is just a little something for you.”
This is what mom wrote in her journal so far today:
“Nov 12 (2011)
Tomorro is Elisa’s Bday. Sammy just called me and told me that they are getting my house ready for when I get home. U’ O!!! I’m getting reade (ready) for me to go to the bathroom. Talk to u I am writing this under duress and I am watching Kahy make c bace (make a face) because she is eating a sour apple (well each to his own taste owne taste!) I’m going to get a shower right now, and I cand (can’t) be bohered (bothered) writing any more about my exxting (exciting) life here. I have to go now because daddy is going”
We tried a crossword puzzle next:
Clue: Qualified. Starts with an E Mom: Eligible
Clue: Writing surface Mom: Desk (wrong answer though)
Clue: Illinois state flower - starts with V Mom: Verbina (answer Violet)
Clue: Frosting effect Mom: Icing
Mom sets out to complete the crossword with great attention and perseverance. She holds tightly to a pencil in her right hand and asks for a better eraser. She skims through all the clues to find one she knows…but then she can’t seem to find her place on the crossword board in order to write the answers.
Mom’s CNA who was moved to a new wing came to visit mom today!!! Mom was thrilled to see the CNA!! Mom asked the CNA where she was working now, what floor, what the patients are like. Very good questions! Mom asked the CNA who the CNA likes better, mom or the new patients!! Mom asked about what it was like for her to be in that unit. She asked if she slept a lot when she was there and I said yes. Mom said, “Well what a waste of time that was. I could have been enjoying all of you.” Mom also said that, “Home is where my family is.”
While mom and I sat doing the crossword puzzle, here’s what was going on at home. “Meanwhile, back at the ranch….” Oh boy!! Anthony, Con, Samantha, John, Jean, Lenny, Claudia and dad moved furniture all over the place. They rearranged the bedroom furniture—moving some around and taking some to other rooms and moving some into the basement. They purchased the special, long shower chair for mom to slide on into the shower---and in so doing, showed dad that the shower doors have to be removed in order for the chair to fit. This meant running to the storage store to get bubble wrap to wrap the doors in and then running to the store to buy a shower curtain and rod in their place (dad grabbed some old metal rod from the garage to screw into the tub surround!!! Oh boy….they talked him out of it). They had to rearrange the living room, the small back computer room, the bedroom. They had to clean up under the awning out by the back door. They had to put all valuables (jewelry…) and the jewelry boxes and anything with a social security or account number on it away---preferably locked up because we will have a stranger (CNA) in the house soon and why tempt someone to do something wrong? They began around 9 a.m. this morning. The job was overwhelming.
Mom had me put her make up on and then she ate lunch. It was a plain swiss cheese on rye sandwich with tomato salad and peaches. I gave mom a small piece of tomato on a fork and put it in her mouth. I was afraid she would choke on the vinegar. I told her this and she mimicked choking---such a comedian!! She also complained, “What are you going to FEED ME?!!!!” outraged!! She has come so far this past year…
We made more phone calls after lunch—Aunt Carol (mom said it was soooo good to talk on the phone with her again—they used to talk for hours on the phone), Angelo, Madeline, Jo Ann, Anthony, Sam, Dad, and then---cousin Tommy! I texted Tommy to let him know we would be calling from the facility. When mom called, Tommy said, “Do you know who this is?” Mom said, “Of course stupid, I called you!” Tommy used to practically live at our house growing up. Mom teased him and laughed and talked. She also called Tommy’s mom, Madeline, but only got the answering machine.
Mom and I went for a walk downstairs next. I bought her some chips since it’s Saturday --- a treat!! Mom kept asking me for her pocketbook so that she could get some money to buy things for me. We visited all the people on mom’s old unit. As always, they were happy to see her. We went back upstairs then and listened to music on the IPAD and sang together. Mom's roommate said she only likes music from the 30s and 40s so I played those songs. Mom and I sang but then she fell asleep.
Terry came to spend the evening with mom. She brought her NOOK Color to play games on with mom. They also watch TV together and talk too. Dad visited mom briefly late in the afternoon. He and I left to go upstate to shut off all the water for the winter.......boo hoo.....!
“I am going to prepare a place for you…” John 14:2
Friday, November 11, 2011
Mom Update, November 11, 2011, Friday
I started the day with mom. She was very happy to see me. She started to cry when she saw me. I set up her breakfast and put her hearing aids in and put her glasses on. It took her a long time to eat breakfast today. She needed to use the bathroom and it took the CNA’s 25 minutes to come to her. I put her sox and shoes on as well as took the bumper off her bed and wheeled her wheelchair up against the bed. Mom started to swing her legs off the side of the bed by herself. Finally the CNA’s came and helped her to the bathroom and then to the shower. I decided to clean her room. I took her alcohol wipes and wiped down her entire bed mattress and bed rails. I also wiped down her remote and phone. I made her bed with fresh linens and then she was back form the shower. I did her hair and set up her tray. I gave her a crossword and a word search and her journal. I took the word search and crossed out any word that is diagonal. She really has a difficult time doing the diagonal words. I stayed a little while longer and then had to go to work. (I work privately with a student who I take out into the community)
Anthony and Sam came to see mom. When Anthony got there mom told him, ‘Help me I am cold in here.” I had opened the window slightly to let some fresh air in the room and forgot to close it. They tried getting her to stand without the walker and she did it twice. She held Anthony’s hand and stood up. They stayed with mom and talked and watched TV and had a nice visit.
Dad went to see mom. He stayed with her all day. Dad exercised her legs. He had mom write in her journal. Dad said she did well with OT and PT and they took her downstairs to work. At one point mom had to use the bathroom and the CNA’s were taking along time. Dad wheeled her into the bathroom and had her stand at the bar. He had her far along in the task and the CNA’s came in and finished the task. She is getting better and better the more she practices. Dad stayed with her to put her to bed tonight.
Tomorrow we will be going to mom and dad’s house to start moving furniture in the bedroom so mom will be able to maneuver in the house. We are also going to try to go to the neighborhood drugstore and look into getting a transport chair to see if we need to make any other changes in the house. The ramp will be installed next week. There are a lot of things that we need to have in place before mom comes home.
Peace and Be Well,
~Claud
Anthony and Sam came to see mom. When Anthony got there mom told him, ‘Help me I am cold in here.” I had opened the window slightly to let some fresh air in the room and forgot to close it. They tried getting her to stand without the walker and she did it twice. She held Anthony’s hand and stood up. They stayed with mom and talked and watched TV and had a nice visit.
Dad went to see mom. He stayed with her all day. Dad exercised her legs. He had mom write in her journal. Dad said she did well with OT and PT and they took her downstairs to work. At one point mom had to use the bathroom and the CNA’s were taking along time. Dad wheeled her into the bathroom and had her stand at the bar. He had her far along in the task and the CNA’s came in and finished the task. She is getting better and better the more she practices. Dad stayed with her to put her to bed tonight.
Tomorrow we will be going to mom and dad’s house to start moving furniture in the bedroom so mom will be able to maneuver in the house. We are also going to try to go to the neighborhood drugstore and look into getting a transport chair to see if we need to make any other changes in the house. The ramp will be installed next week. There are a lot of things that we need to have in place before mom comes home.
Peace and Be Well,
~Claud
Thursday, November 10, 2011
Mom Update, November 10, 2011, Thursday
I began yesterday's blog/e-mail and Claudia finished it. In doing so, we forgot a great story to share. Last night, Claudia and I were at work late together. I finished up my office work and went down to her classroom. I found her there with 2 students. Class had ended long ago, but there was my sister dedicated and concerned about the students to the end!! She had one student up front with her and she was explaining how to construct a lesson plan geared toward special education students. The topic the student was planning for was Thanksgiving traditions past and present. When it came time to talk about how to close the lesson (the student wanted her kids to compare and contrast past and present Thanksgiving traditions), Claudia told the student to create a book about her own Thanksgiving traditions that she and her family share. Claudia gave this example:
"You know," Claudia said, "You can say something in the story like: Every Thanksgiving my whole family gets together....brothers, sisters, husbands, wives, nieces, nephews... and we eat dinner and clean up and then, after dessert, we all sit at the dining room table and play board games together young and old! And we laugh and have fun..."
"Wow," the student said, "If only that were real. If that could really take place."
"It does. It is real. That's how our family celebrates every holiday," I said. (I had been sitting at the back of the room waiting for Claudia to finish and heard the whole thing).
"Reeeeallly???..." said the student. "Wow."
We take so much for granted. We do. We are so blessed and lucky to have each other...in so many ways. I felt badly for the student so I invited her to our house for the holiday!!! hahaha! You just never know where the events of each day will bring you. Seize the day!
Dad began the day with mom at 6:30 a.m.!!! Mom had her EEG done today in light of the "fidgetiness" we have seen over the last few weeks. We will get the results in about a week or two. I met dad and mom at the doctor's office at 7:45 a.m. Mom was comical as always! Cracking jokes with everyone, making everyone smile or laugh. The CNA and I brought her into the examination/testing room and helped her get from the wheelchair to the test chair (a recliner). Mom did really well following our commands to stand (though she still tends to look/bend down rather then up straight), take a few steps and then sit. She couldn't really pivot to sit for us though.
I stay in the room with mom while she is tested. She tells me it makes her feel strong to have me with her. She joked with the technician and asked me more than once, "So why am I having this test done?" I told her it was to check on how well her brain is working (a half truth--I didn't want to alarm her then and there about the concern over the fidgetiness--my goal was to have her get through the test to the best of her ability). While she is tested, mom has to lie perfectly still. No moving, blinking, eye opening (eyes must be closed). I usually hum to her or gently stroke her arm or face to calm her. Though mom and I have done this together so many times before over the last 17 months, for some reason, it bothered me today. I remembered the first time mom and I did this....so many months ago. She was barely awake. She had just begun to come out of the coma but still slept for days on end--giving us only a glimmer of awake, alert time back then. Back then, you never knew when she would be awake so, if you wanted to work with her cognitively in any way, you had to just sit there by her side and wait for her to wake up...you had to sit and wait for the "moment" to happen. If you weren't there constantly, you would miss it altogether.
What hard work mom has done to get to where she is today. It is truly amazing. And though her recovery has been an answer to prayer and a miraculous event and just what we all have hoped and wished for...our focus was never on what we wanted, but on making mom's life better. Making each of her days better than the last one. Making each moment fully count.
"My heart took delight in all my work, and this was the reward for all my labor." Ecclesiastes 2:10
~Kathy
I arrived at mom's after work and dad and mom were sitting together watching TV with her roommate. I brought Chinese food for dinner for us. We sat and talked and dad told me about how he is preparing for mom to come home and who he has called to do what (ramp, wheelchair, etc.) I waited to eat because it was too early. After we visited for awhile, I set up dinner. Dad left and mom and I ate Chinese food. She loved it! After dinner I gave her the journal and she wrote the following:
"I am writing something nice about Jean. He is the most wonderful man - so thoughtful. Claudia brought Chinese food and I loved it. I hate going to bed because everybody goes home and it's very lonely."
We played with "crosswords." It is a little game that has lettered die that you throw and then spell words in a crossword fashion. After that I took out a book of "cutting" worksheets so she could practice cutting on a line. I took out the first one and she had to cut a picture in half and then I had her put them together to make the picture. She didn't do this as fast as I thought she would. She was able to do it, but it wasn't fluid. One of the pictures was a picture of a house and you cut the door so it opened on a fold. Mom cut it out and opened the door and commented that no one was there. I took dad's photo that he left and a piece of construction paper. I taped the door over the photo and then taped the whole thing onto the construction paper. I wrote on top, "Open the door to see the stud muffin!" I then gave it to mom and she opened the door and cracked up!!! I taped it to the TV so everyone can get a good laugh. Next I took out a word search and mom was able to do all the horizontal and vertical words but had a great deal of difficulty doing the diagonal words. I gave her another word search but crossed out the words that were diagonal. THis worked out much better. There were times, though, when she didn't circle every letter in a word. She would either leave off the first or last letter. We then did a crossword puzzle and mom's roommate asked me to open the curtain so she could hear us do the puzzle. Mom and I finished the entire puzzle. She did 3/4 of the puzzle herself. She is great at crosswords. I then put a dvd of one of the shows Ava and Jean were in and her roommate watched as well. Mom asked me to replay a few of the songs over and over.
The CNA's came in the room and put mom to bed. The evening staff has a difficult time transferring her form the wheelchair. I had to help by telling them common sense things like her feet need to be under her knees and completely vertical to the floor instead of stretched out in front of her. I also had to let them know that she has to use "BOTH HANDS" to grab the bar or the wheelchair arm rests. I sat next to mom and held her hand as we watched one last show before I left. I said a prayer and kissed her and left.
This was our fortune cookie from our dinner:
He who knows that enough is enough will always have enough!!!
Peace and Be Well,
~Claud
"You know," Claudia said, "You can say something in the story like: Every Thanksgiving my whole family gets together....brothers, sisters, husbands, wives, nieces, nephews... and we eat dinner and clean up and then, after dessert, we all sit at the dining room table and play board games together young and old! And we laugh and have fun..."
"Wow," the student said, "If only that were real. If that could really take place."
"It does. It is real. That's how our family celebrates every holiday," I said. (I had been sitting at the back of the room waiting for Claudia to finish and heard the whole thing).
"Reeeeallly???..." said the student. "Wow."
We take so much for granted. We do. We are so blessed and lucky to have each other...in so many ways. I felt badly for the student so I invited her to our house for the holiday!!! hahaha! You just never know where the events of each day will bring you. Seize the day!
Dad began the day with mom at 6:30 a.m.!!! Mom had her EEG done today in light of the "fidgetiness" we have seen over the last few weeks. We will get the results in about a week or two. I met dad and mom at the doctor's office at 7:45 a.m. Mom was comical as always! Cracking jokes with everyone, making everyone smile or laugh. The CNA and I brought her into the examination/testing room and helped her get from the wheelchair to the test chair (a recliner). Mom did really well following our commands to stand (though she still tends to look/bend down rather then up straight), take a few steps and then sit. She couldn't really pivot to sit for us though.
I stay in the room with mom while she is tested. She tells me it makes her feel strong to have me with her. She joked with the technician and asked me more than once, "So why am I having this test done?" I told her it was to check on how well her brain is working (a half truth--I didn't want to alarm her then and there about the concern over the fidgetiness--my goal was to have her get through the test to the best of her ability). While she is tested, mom has to lie perfectly still. No moving, blinking, eye opening (eyes must be closed). I usually hum to her or gently stroke her arm or face to calm her. Though mom and I have done this together so many times before over the last 17 months, for some reason, it bothered me today. I remembered the first time mom and I did this....so many months ago. She was barely awake. She had just begun to come out of the coma but still slept for days on end--giving us only a glimmer of awake, alert time back then. Back then, you never knew when she would be awake so, if you wanted to work with her cognitively in any way, you had to just sit there by her side and wait for her to wake up...you had to sit and wait for the "moment" to happen. If you weren't there constantly, you would miss it altogether.
What hard work mom has done to get to where she is today. It is truly amazing. And though her recovery has been an answer to prayer and a miraculous event and just what we all have hoped and wished for...our focus was never on what we wanted, but on making mom's life better. Making each of her days better than the last one. Making each moment fully count.
"My heart took delight in all my work, and this was the reward for all my labor." Ecclesiastes 2:10
~Kathy
I arrived at mom's after work and dad and mom were sitting together watching TV with her roommate. I brought Chinese food for dinner for us. We sat and talked and dad told me about how he is preparing for mom to come home and who he has called to do what (ramp, wheelchair, etc.) I waited to eat because it was too early. After we visited for awhile, I set up dinner. Dad left and mom and I ate Chinese food. She loved it! After dinner I gave her the journal and she wrote the following:
"I am writing something nice about Jean. He is the most wonderful man - so thoughtful. Claudia brought Chinese food and I loved it. I hate going to bed because everybody goes home and it's very lonely."
We played with "crosswords." It is a little game that has lettered die that you throw and then spell words in a crossword fashion. After that I took out a book of "cutting" worksheets so she could practice cutting on a line. I took out the first one and she had to cut a picture in half and then I had her put them together to make the picture. She didn't do this as fast as I thought she would. She was able to do it, but it wasn't fluid. One of the pictures was a picture of a house and you cut the door so it opened on a fold. Mom cut it out and opened the door and commented that no one was there. I took dad's photo that he left and a piece of construction paper. I taped the door over the photo and then taped the whole thing onto the construction paper. I wrote on top, "Open the door to see the stud muffin!" I then gave it to mom and she opened the door and cracked up!!! I taped it to the TV so everyone can get a good laugh. Next I took out a word search and mom was able to do all the horizontal and vertical words but had a great deal of difficulty doing the diagonal words. I gave her another word search but crossed out the words that were diagonal. THis worked out much better. There were times, though, when she didn't circle every letter in a word. She would either leave off the first or last letter. We then did a crossword puzzle and mom's roommate asked me to open the curtain so she could hear us do the puzzle. Mom and I finished the entire puzzle. She did 3/4 of the puzzle herself. She is great at crosswords. I then put a dvd of one of the shows Ava and Jean were in and her roommate watched as well. Mom asked me to replay a few of the songs over and over.
The CNA's came in the room and put mom to bed. The evening staff has a difficult time transferring her form the wheelchair. I had to help by telling them common sense things like her feet need to be under her knees and completely vertical to the floor instead of stretched out in front of her. I also had to let them know that she has to use "BOTH HANDS" to grab the bar or the wheelchair arm rests. I sat next to mom and held her hand as we watched one last show before I left. I said a prayer and kissed her and left.
This was our fortune cookie from our dinner:
He who knows that enough is enough will always have enough!!!
Peace and Be Well,
~Claud
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