Dad and I started the day with mom bright and early (5:15 a.m.)! Mom was awake and happy and alert. Her CNA said that mom slept well last night---through the night!!! Mom wanted to know why dad was here so early and she also wanted to know why she can’t go home and use her own toilet. Mom also was upset because she wanted to get herself washed and she said she needed to wash her hair!!! This is all a first!! Wow! Mom also asked me what notes I am writing on the computer all the time when I am with her. I told her about the blog and the emails I send to everyone about her day. We called Claudia and mom spoke to her. Mom wanted to know why she can’t go home and she told Claudia we are keeping her prisoner here! She was joking. She is continuing to insist that she wants to go home. She asked me how long she has been here and why. She couldn’t believe the story about what happened to her. We kept telling her about using the bed pan and mom kept telling us she wanted to take the bed pan to the bathroom!! She wants that bathroom and home badly! These will be her motivators! Haha!
The transport vehicle was LATE!!! Supposed to be here at 6 a.m. but arrived at 7 a.m.!!! Exasperating. They were downstairs waiting at the door for us to come down and the people up here were waiting for the transport people to come up….no communication!!! To boot, it was raining…rain, expressway rush hour, late…nice start! Hahaha! I put it all in the Hands of God in the morning though, so if we were late, maybe we avoided a possible accident or mishap, who knows?
Thankfully, we all made it there by 8:20. Mom was scheduled for an 8:30 procedure. Another mistake…mom should have been transported on a guerney this time because of the procedure—not a wheelchair. The hospital had to find people to lift mom manually (like the old days) to move her from the chair to the bed. The anesthesiologist came to see us and then the doctor. The doctor was a very nice person. The doctor said that it is standard to recheck a coil after 1 – 1 ½ years after it is initially put in. The recheck is to see if there is further bleeding of any kind. It is common to have the site of an aneurysm reopen to some degree within a year or so. Initially, one year ago, when mom had the aneurysm burst, she had a 45% chance of survival. Mom is a miracle. The doctor said that they will be taking pictures of BOTH sides of mom’s brain today since her initial injury was in the direct center of her forehead. The doctor said that if the injury was on one side or another, pictures would be taken of only one side and damage from the initial injury would be on one side only. Mom, technically, could have suffered injury on both sides of her body…but she didn’t. Her weakness is only on the left side. The doctor said that, initially, mom’s injury was extensive---it had been an extensive bleed…with significant amounts of blood loss and collection on the brain. Mom is a miracle. Depending upon what they see today, mom will go home and follow up in a year with an MRA from here on in. If, God forbid, there is any bleeding from the site, the neurosurgeon will decide how to follow up. Before mom left for the procedure, we met both the anesthesiologist and the neurosurgeon who put the coil in last year. The surgeon assessed mom, asking her to move both legs and toes, and arms, fingers…asked her to smile, stick out her tongue. The doctor asked her who I was and she said, “My daughter” (I was demoted back to a daughter---she used to say I was her mother!!). When the doctor asked what my name was, mom said, “Katherine” kidding around and when he asked who dad is, mom said, “I never saw that man before in my life” and laughed!!! She joked the whole way into the procedure. Dad and I are in the waiting room now.
The doctor said that the procedure went well. There is a spot at the base of the original aneurism that has no coil in it. The aneurism itself has a coil in it that stopped the bleeding last year and formed a rock solid scab in the aneurism. At the base of the aneurism where it meets mom’s blood vessel (this is called the NECK) there is a very small spot with no coil. This spot will, over time, also heal into a hard scab. Mom will need only an MRA in 1 – 1 ½ years from now. We saw mom in the OR and also in the recovery room and she looked great and spoke to us and answered questions. She will have to eat and drink and urinate before leaving. Mom still has a urinary tract infection but the surgeons said that, given extent of the colonization, it is apparent that this type of infection is something that is just typical for mom---something that leaves her asymptomatic and fine. Therefore, no treatment is necessary.
Dad and I went downstairs to have lunch and we saw the neurosurgeon who treated mom last year and this year with the shunt. The surgeon wanted a full update on mom and when we told of how wonderful mom is doing, the surgeon said to bring mom upstairs to the NSCU asap so everyone could see her and how great she is doing. We ended up not being able to go upstairs today though because the transport people were an hour early!!! Mom joked and joked and joked and laughed in the recovery room. We had so much fun! Dad rode back to the facility with mom in the ambulette and I followed.
When we got back to the facility, we found that the huge thick mats were gone and some small, long mats were attached to the sides of mom’s bed instead. On the floor, were the long thin mats again. The CNA came to put mom on the bed pan and left her there to give someone else a shower!! Ouch!! I took mom off the pan. Then the bed alarm was broken…but they fixed it. Jean came to be with mom tonight followed by Claudia later and dad and I left. As we left, we told mom we were leaving for upstate---mom called us bums and finks because we were going upstate without her. She is very aware now. This is the first time she complained that she couldn’t go with us.
BUT……..life was too calm obviously….just as I was about to hop into the shower and relax in bed, Claudia called to say: MOM PULLED HER FEEDING TUBE OUT!!!! Dad, Lenny and I ran to the facility (we were supposed to be on our way upstate but were waiting until morning because of tornadoes upstate) --- little did we know that we’d have our own tornado here! Hahah! The nurses at the facility quickly put the feeding tube back in. When I voiced my concern with just leaving mom at the facility and not sending her to the hospital, I was told that the gastro system is not connected to the groin area (I expressed my concern over this trauma in the immediate wake of the cerebral angiogram)---no really? (Pardon my sarcasm…I am tired…it’s 10 p.m. now). I was trying to say that mom was supposed to be kept calm, quiet…relaxed…after the procedure today and for the next 24 hours. We went back into mom’s room and found that after the 4th attempt on the bed pan…mom missed again and
urinated all over the bed and linens. It’s maddening. We told the CNAs that the bed was saturated(and to take bed pans 101 again---only kidding!) and saw that mom’s new feeding tube was left open at the end so the bile from her stomach was spilling all over her abdomen and down into the groin area----a little unsterile to say the least. She was finally cleaned up and sent to the local hospital for an x-ray to see if the tube was in place or not. The tube may come out for keeps on Friday anyway—when I called the facility to say this—no one answered the phone. The end result was a trip to the hospital. The EMTs recognized mom and couldn’t believe the change in her!!! Mom became nauseas and had developed a bad headache by the time we reached the hospital --- BP was 140 over 76…no one was concerned though.
I forgot to mention that, out of the blue today, mom asked me, “Hey, where are my earrings and rings? Who has them?” I gave her earrings to Sammy, and her rings to Terry, Ava and Claudia to hold until mom got better.
Dad and Lenny went to sleep in the waiting room. Claudia and I stayed with mom. They came to the gurney to x-ray mom and at about 11:10 p.m. the nurse said all looked good, but a doctor had to approve it before she gets discharged. Who knows if we will go upstate tomorrow or not. Thank God mom is OK but she complained of a headache and nausea until she fell asleep…she had none of this before the feeding tube came out. Long day.Dad and I left at 11:30 and Claudia and Lenny stayed with mom until she got back to the facility.
"May you be strengthened with all power, according to his glorious might, for all endurance and patience with joy..." Colossians 1:11
Saturday, July 30, 2011
Thursday, July 28, 2011
Mom Update, July 28, 2011, Thursday
Mom's procedure -- the cerebral angiogram -- is tomorrow. Please pray for her. She is the first on the list for procedures and is scheduled for 8:30 a.m. The procedure should take 1 hour and then she will be in the recovery room for 3-4 hours. If all is well with bloodwork, and urination and cognitive ability, she goes back to the facility from the hospital. The procedure involves a twilight type of anesthetic and then a catheter through the groin up into the brain to check on the sight of the burst aneurysm and the coil procedure that was done last year. This is a one time check up.
Mom began the day this morning with Anthony and Anthony Michael. The speech therapist came to give mom breakfast. Mom ate a hard boiled egg, oatmeal, and a bagel along with thickened coffee and thickened juice. Mom fed herself the meal alone. She said the egg tasted great. The speech therapist had a chest x-ray done yesterday but no results yet this morning. Next week, mom should be eating a regular (mechanical soft) diet. Anthony said that the mat nearest the doorway did not appear to be velcroed to the floor this morning. Anthony Michael played cards with mom --- 31. She followed along with verbal and physical prompts (not sure she understood the game or not). As far as mom’s eating on her own next week, we need to be sure that the aides know that she will feed herself and should not be fed. AND that the aides know that there should be no distractions during a meal like TV. Not yet anyway.
Claudia said that last night a nurse came in to change mom’s catheter---it was already out!! Claudia said mom no longer has a catheter and the person argued with Claudia. Finally, the person checked mom’s records and saw that Claudia was right…no more catheter. Thank God Claudia was there!!!! Advocacy never ends.
When I arrived, I asked mom what she had for breakfast and she was able to tell me that she ate oatmeal!! She remembered!! She also told me she ate something else but couldn’t remember so she described it to me, “You know, it was….like this” and she made a circular motion and then she tried to tell me what it is made out of (a bagel). Then Anthony gave her a hint about the hard boiled egg…he said that they had to crack it and mom remembered—“ Oh yeah, a hard boiled egg.” I began to eat the bagel I brought for breakfast and mom stared at me intently so I said, “What are you looking at?” and smiled. Mom said, “Nothing…I just like watching YOU eat!” Anthony said he had to leave then and mom didn’t respond so he repeated it and mom said, “Yeah, so what do you want me to do?” in a teasing, sarcastic manner!! We all cracked up! I brought a beautiful piggy on a wagon (resin statue) that a dear friend of mine bought for mom. I showed mom the piggy and then as I handed her the card, I told her it was from my friend who is Geraldo’s sister to see if she could guess who gave it to her and she said, “Ohhhh from Irene!” She knew!!
We all have noticed that mom is snoring slightly again when she sleeps. Anthony and Anthony Michael spoke to the head of respiratory downstairs and the respiratory therapist said that we should bring it to the attention of the facility doctor who will then send mom out for another sleep study. Mom’s old machine from home may not be calibrated correctly now due to her significant weight loss (50 lbs.).
No sooner was mom in the chair today, she told me she needed to go to the bathroom. The nurse and CNA were so kind and put mom back into the bed (which meant finding the hoyer again and lifting her back up again)!! The nurse explained to us both that mom will be on a schedule for the bed pan now…every 3-4 hours and things will be recorded. At first mom said she couldn’t do it---but she did!! She also told me, “Oh Kathy…this is so terrible how I am now.” I encouraged her. After she finished, she asked me what the CNAs name was and called her back---mom grabbed her hand in both of hers and said, “Thank you so very much for helping me.” The CNA and I cried.
On the down side….I accidentally hit mom’s ankle on the doorway of the elevator yesterday and today she is complaining that it hurts to the touch….I pray I didn’t do damage…. I will have the PT people and the doctor look at it later.
Mom asked me to comb her hair and put on her make up. We did that together. We did the calendar first and she knew the answers just from having me tell her what yesterday was! Mom also asked for a cloth so she could clean her glasses!!! This is a first!! When mom reads the calendar, she begins at the left and counts to the right but them, instead of going to the left on the second row, she reads the box and number directly under the last number she read and counts backwards so to speak from right to left, then goes down a row and counts left to right and repeats. She doesn’t do this when reading words though. We began to work on money concepts next using the huge board that Claudia made for mom (the board is divided into 4 quadrants and in each one there is velcroed either a quarter, nickel, dime, or penny [fake oversized plastic money] and its coinciding name in words and then in numbers). We read through all the pieces of money and then mom fell asleep. She slept only for 5 minutes and we continued. I took the coins away and had mom match them to their word and numeric amount. She was really confused with the penny, she read the nickel and dime and said, “Oh I cheated, I read it” and she knew the quarter (the first one we did). Next, I showed her the words and had her match them to the coins…confused. BUT, when I showed her the numeric amounts, she knew the match for all!!!I showed her the words again next and she only knew the dime and quarter. (Her roommate called out the answers! Too cute). I then showed her the coins and she read them to match them to the correct amounts…she has no idea which coins are which without reading them…but thank God this is a good strategy to use. I showed her the words next and she was stumped on the penny again. Mom knows how much the value of the coins is…strange—she doesn’t know the names.
When dad came, I asked mom to tell him what she ate for breakfast and she remembered she had juice and then I said she ate something with a spoon and mom said oatmeal…then she guessed a bagel when I described it (bread product that is round with a hole in the middle and starts with a B) and a hard boiled egg when I described it (you crack it and it’s white).
Mom loves to play games and loves a challenge. She used to tell me that, when she was little, she used to pretend to do complicated tasks because they made her feel important. She seems to take on the tasks she does now in the same way. I stopped to take a note before and mom said, “Hey come on now…what are we doing here?” and laughed which meant that she wanted me to keep her working. Thinking about how she was my teacher early in life and how now I am hers is such an honor.
I spoke to the nurse about mom’s ankle and the nurse said it is just bruised. I will have PT look at it too.
Mom’s friends came to see her—Flo, Marty and Maureen. We all moved to the lounge to visit and mom knew them all and greeted each one by name. Mom read some cards today. One was from Con and John’s cousins Jodi and Sal, another was from a choir friend and another was from a friend of mine. Mom loved reading them and said it was so nice of the people to send them.
Mom had lunch in the lounge while her friends visited. She had tilapia (she didn’t like it or eat much of it), yellow rice and mixed veggies (she ate both of these). She drank most of her juice too. She fed herself the entire meal and had minimal spillage on the bib. Physical Therapy came to bring her to the PT gym as soon as she finished lunch.
Mom did well in PT but we got no details. In OT, mom worked in a mock kitchen area. She practiced reaching for objects on a counter etc. The OT said she did well. When she came back,she was tired but talked with us all. Mom SANG her first song today!!! Previously, she would just mouth all the words. Today, SHE SANG…!!! with Maureen!! They sang, “How do you do my partner” from grade school. Then they sang “The elephant has a great big trunk.” I remembered the song from childhood: “The elephant has a great big trunk, he takes wherever he goes, there is no lock and there is no key and he never packs it with clothes!” Mom also talked on the phone to Lenny today---very cohesively. Mom also called Aunt Sophie today and talked to her too. I asked her what Aunt Sophie said and mom said, “She said she loves me from the bottom of her heart.” Mom kept fiddling with the hoyer handles while we all visited---on and off she would ask how she could get them off or if we had a knife or a scissor. All in all, mom visited the best she has yet with her friends.
After her friends left, we went back to mom’s room. The CNAs put her to bed. I left and dad left a few minutes later. As dad was leaving, he put the mats beside the bed and mom said, "Oh good, you're sleeping here tonight with me?" Con, Sammy and Anthony Michael came to be with mom tonight. Sammy did Nonny’s nails---took off her old polish and put new polish on. They played games and talked and watched TV and “chillaxed” as Sammy says. Sam said mom was doing well. Sammy said that after a while they dimmed the lights and told mom it was time for sleeping. Mom kept telling all of them to go to sleep. They pretended they were sleeping but mom just stayed awake and wouldn't sleep so Sam sang Nonny a lullaby and played with Nonny's hair until she fell asleep...but then a nurse came in and woke mom. Watching all the kids work with and care for mom, but especially Sammy and Anthony Michael (maybe because they are the Gilman babies) makes me smile and cry. When I listened to Sammy's phone message to me as she reported on Nonny tonight, it just touched my heart. The love all around mom and the love that she is bringing out in so many people is amazing.
"Trust me in your times of trouble, and I will rescue you, and you will give me glory."
Psalm 50:15
Mom began the day this morning with Anthony and Anthony Michael. The speech therapist came to give mom breakfast. Mom ate a hard boiled egg, oatmeal, and a bagel along with thickened coffee and thickened juice. Mom fed herself the meal alone. She said the egg tasted great. The speech therapist had a chest x-ray done yesterday but no results yet this morning. Next week, mom should be eating a regular (mechanical soft) diet. Anthony said that the mat nearest the doorway did not appear to be velcroed to the floor this morning. Anthony Michael played cards with mom --- 31. She followed along with verbal and physical prompts (not sure she understood the game or not). As far as mom’s eating on her own next week, we need to be sure that the aides know that she will feed herself and should not be fed. AND that the aides know that there should be no distractions during a meal like TV. Not yet anyway.
Claudia said that last night a nurse came in to change mom’s catheter---it was already out!! Claudia said mom no longer has a catheter and the person argued with Claudia. Finally, the person checked mom’s records and saw that Claudia was right…no more catheter. Thank God Claudia was there!!!! Advocacy never ends.
When I arrived, I asked mom what she had for breakfast and she was able to tell me that she ate oatmeal!! She remembered!! She also told me she ate something else but couldn’t remember so she described it to me, “You know, it was….like this” and she made a circular motion and then she tried to tell me what it is made out of (a bagel). Then Anthony gave her a hint about the hard boiled egg…he said that they had to crack it and mom remembered—“ Oh yeah, a hard boiled egg.” I began to eat the bagel I brought for breakfast and mom stared at me intently so I said, “What are you looking at?” and smiled. Mom said, “Nothing…I just like watching YOU eat!” Anthony said he had to leave then and mom didn’t respond so he repeated it and mom said, “Yeah, so what do you want me to do?” in a teasing, sarcastic manner!! We all cracked up! I brought a beautiful piggy on a wagon (resin statue) that a dear friend of mine bought for mom. I showed mom the piggy and then as I handed her the card, I told her it was from my friend who is Geraldo’s sister to see if she could guess who gave it to her and she said, “Ohhhh from Irene!” She knew!!
We all have noticed that mom is snoring slightly again when she sleeps. Anthony and Anthony Michael spoke to the head of respiratory downstairs and the respiratory therapist said that we should bring it to the attention of the facility doctor who will then send mom out for another sleep study. Mom’s old machine from home may not be calibrated correctly now due to her significant weight loss (50 lbs.).
No sooner was mom in the chair today, she told me she needed to go to the bathroom. The nurse and CNA were so kind and put mom back into the bed (which meant finding the hoyer again and lifting her back up again)!! The nurse explained to us both that mom will be on a schedule for the bed pan now…every 3-4 hours and things will be recorded. At first mom said she couldn’t do it---but she did!! She also told me, “Oh Kathy…this is so terrible how I am now.” I encouraged her. After she finished, she asked me what the CNAs name was and called her back---mom grabbed her hand in both of hers and said, “Thank you so very much for helping me.” The CNA and I cried.
On the down side….I accidentally hit mom’s ankle on the doorway of the elevator yesterday and today she is complaining that it hurts to the touch….I pray I didn’t do damage…. I will have the PT people and the doctor look at it later.
Mom asked me to comb her hair and put on her make up. We did that together. We did the calendar first and she knew the answers just from having me tell her what yesterday was! Mom also asked for a cloth so she could clean her glasses!!! This is a first!! When mom reads the calendar, she begins at the left and counts to the right but them, instead of going to the left on the second row, she reads the box and number directly under the last number she read and counts backwards so to speak from right to left, then goes down a row and counts left to right and repeats. She doesn’t do this when reading words though. We began to work on money concepts next using the huge board that Claudia made for mom (the board is divided into 4 quadrants and in each one there is velcroed either a quarter, nickel, dime, or penny [fake oversized plastic money] and its coinciding name in words and then in numbers). We read through all the pieces of money and then mom fell asleep. She slept only for 5 minutes and we continued. I took the coins away and had mom match them to their word and numeric amount. She was really confused with the penny, she read the nickel and dime and said, “Oh I cheated, I read it” and she knew the quarter (the first one we did). Next, I showed her the words and had her match them to the coins…confused. BUT, when I showed her the numeric amounts, she knew the match for all!!!I showed her the words again next and she only knew the dime and quarter. (Her roommate called out the answers! Too cute). I then showed her the coins and she read them to match them to the correct amounts…she has no idea which coins are which without reading them…but thank God this is a good strategy to use. I showed her the words next and she was stumped on the penny again. Mom knows how much the value of the coins is…strange—she doesn’t know the names.
When dad came, I asked mom to tell him what she ate for breakfast and she remembered she had juice and then I said she ate something with a spoon and mom said oatmeal…then she guessed a bagel when I described it (bread product that is round with a hole in the middle and starts with a B) and a hard boiled egg when I described it (you crack it and it’s white).
Mom loves to play games and loves a challenge. She used to tell me that, when she was little, she used to pretend to do complicated tasks because they made her feel important. She seems to take on the tasks she does now in the same way. I stopped to take a note before and mom said, “Hey come on now…what are we doing here?” and laughed which meant that she wanted me to keep her working. Thinking about how she was my teacher early in life and how now I am hers is such an honor.
I spoke to the nurse about mom’s ankle and the nurse said it is just bruised. I will have PT look at it too.
Mom’s friends came to see her—Flo, Marty and Maureen. We all moved to the lounge to visit and mom knew them all and greeted each one by name. Mom read some cards today. One was from Con and John’s cousins Jodi and Sal, another was from a choir friend and another was from a friend of mine. Mom loved reading them and said it was so nice of the people to send them.
Mom had lunch in the lounge while her friends visited. She had tilapia (she didn’t like it or eat much of it), yellow rice and mixed veggies (she ate both of these). She drank most of her juice too. She fed herself the entire meal and had minimal spillage on the bib. Physical Therapy came to bring her to the PT gym as soon as she finished lunch.
Mom did well in PT but we got no details. In OT, mom worked in a mock kitchen area. She practiced reaching for objects on a counter etc. The OT said she did well. When she came back,she was tired but talked with us all. Mom SANG her first song today!!! Previously, she would just mouth all the words. Today, SHE SANG…!!! with Maureen!! They sang, “How do you do my partner” from grade school. Then they sang “The elephant has a great big trunk.” I remembered the song from childhood: “The elephant has a great big trunk, he takes wherever he goes, there is no lock and there is no key and he never packs it with clothes!” Mom also talked on the phone to Lenny today---very cohesively. Mom also called Aunt Sophie today and talked to her too. I asked her what Aunt Sophie said and mom said, “She said she loves me from the bottom of her heart.” Mom kept fiddling with the hoyer handles while we all visited---on and off she would ask how she could get them off or if we had a knife or a scissor. All in all, mom visited the best she has yet with her friends.
After her friends left, we went back to mom’s room. The CNAs put her to bed. I left and dad left a few minutes later. As dad was leaving, he put the mats beside the bed and mom said, "Oh good, you're sleeping here tonight with me?" Con, Sammy and Anthony Michael came to be with mom tonight. Sammy did Nonny’s nails---took off her old polish and put new polish on. They played games and talked and watched TV and “chillaxed” as Sammy says. Sam said mom was doing well. Sammy said that after a while they dimmed the lights and told mom it was time for sleeping. Mom kept telling all of them to go to sleep. They pretended they were sleeping but mom just stayed awake and wouldn't sleep so Sam sang Nonny a lullaby and played with Nonny's hair until she fell asleep...but then a nurse came in and woke mom. Watching all the kids work with and care for mom, but especially Sammy and Anthony Michael (maybe because they are the Gilman babies) makes me smile and cry. When I listened to Sammy's phone message to me as she reported on Nonny tonight, it just touched my heart. The love all around mom and the love that she is bringing out in so many people is amazing.
"Trust me in your times of trouble, and I will rescue you, and you will give me glory."
Psalm 50:15
Wednesday, July 27, 2011
Mom Update, July 27, 2011, Wednesday, Addendum
Tonight, while Claudia was with mom, mom told Claudia, “I’m nervous.” When Claudia asked mom why she was nervous, mom said, “Because I don’t think Dad knows where I am.” Claudia assured her that day knew where she was. Then mom said she was nervous because she didn’t think I knew where she was. She also asked if dad knew she is sleeping there at the facility (she calls it a hospital). Mom asked, “So who’s coming to see me in the morning?” Then she asked who is coming during the day. Claudia told her that Anthony, Dad and I were coming. Then mom asked about the night and Claudia said Con and the kids were coming. Mom asked why they were coming at night and Claudia told her because Con works and mom said, “Oh that’s right.” Then mom looked at the door and asked Claudia if that was the door to get out of here. Claudia said, “Not for you. You stay in bed.” Then mom said she was nervous because, “The woman in the bed over there will scream all night.” Then, mom asked how she could help her roommate or what she could do for her if the roommate yells and screams. Mom was anxious but very able to articulate her feelings. Claudia and mom watched “Storage Wars” on TV and mom commented on the show to Claudia as they watched. Claudia put the mats on the floor (they are tall and have tape at the bottom so they stick to the floor. Mom seemed OK when Claudia left.
"Do not fear what they fear; do not be frightened." 1 Peter 3:14
"Do not fear what they fear; do not be frightened." 1 Peter 3:14
Mom Update, July 27, 2011, Wednesday
I’ll start this entry by saying first that mom is fine.
I woke this morning early to the sound of my phone ringing (the call in the middle of the night…oh boy). The caller ID said the name of the facility and so my heart jumped. The night nurse called to tell me that as she passed mom’s room last night at 2 a.m., the nurse found mom sitting on the mat on the floor beside her bed looking around. The nurse said mom was pointing at the wheelchair and appeared to be fine. Mom was put back into bed and inspected for any signs of harm. Mom appeared to be just fine. The nurse said that mom had been very agitated from 9 p.m. through 2 a.m. The nurse sat with mom to calm her down from 2 -3 a.m. and then mom was checked every 15 minutes to see how she was. Thank God she wasn’t hurt. QUESTIONS….Why didn’t the bed alarm go off? If it did go off, why wasn’t mom tended to immediately? How long was mom on the floor? Why weren’t the notes from downstairs in the old unit transferred upstairs to the new unit???
Anthony and I went to see mom really early this morning. Mom kept asking Anthony why he was here with her so early. It appears that mom remembers that Anthony doesn’t come to wake her in the morning. Then, after hearing that Anthony was worried about her, mom apologized over and over for being “a pain in the neck” to everyone. So like mom. I asked her what happened last night and she said nothing and then I asked if she slept last night and she said she didn’t. I told her we heard she was on the floor last night and mom said, “Well…well.. actually, I got out of bed and there’s a long, blue mat on the floor and I was sitting on that.” She remembered!! I asked why she got up and she said because she wanted to go to the bathroom. I told her, and also reviewed with her, that she needs to ring the bell and ask the nurse for a bed pan for now until she can walk better. But…when I asked mom a few minutes later what she should do if she needs the bed pan she said, “Get up and go to the bathroom.” She laughed a bit though so I am wondering if she is just ‘pulling my leg.’
I left for work and Dad joined Anthony and mom. Anthony said that mom had breakfast and read magazines and talked while I was gone. Mom ate breakfast by herself!!! BUT the speech therapist gave mom PANCAKES!!!! With SYRUP!!! God help us. I inquired as to whether the blood work and urinalysis from the hospital pre-op testing was back yet or not and was told it hadn’t come yet. The Physician’s Assistant saw mom yesterday and has an order in for mom to be seen by the resident doctor and then by an urologist. I am hoping that mom doesn’t lose the sensation to eliminate from having a catheter for so long….right now, she still gets the urge to go which is critical toward being able to use a toilet again. I spoke to the speech therapist when I returned and was told that mom will be on a full diet tomorrow---I am not sure if we are allowed to feed her or if the therapist still has to be there or not. The therapist is ordering a chest x-ray to see if mom’s chest is clear.
As an aside…we started all over again regarding the family/patient lounge conditions… Each floor and unit had a lounge with AC and a bathroom. Each lounge had many issues regarding these items…!! I had to call maintenance to get them all up and running appropriately. So far, on this floor, the bathroom door doesn’t lock (it’s broken) and the soap dispenser is also broken. The ACs were also not working. After 4 phone calls to maintenance, the ACs now work but the bathroom door still doesn’t lock and the soap is a no go too!
I put mom’s make up on next. And I gave her a hair cut too. Next, we did some cognitive activities. The first one we did was with paper clips. Claudia had bought mom some 2 inch long plastic, colored paper clips. I threw them in a pile on the table and asked her to sort them by color saying, “OK, can you find all the yellow ones and put them in a pile?” Then we did the same for all the other colors (yellow, orange, red, green and blue). Mom did this activity with no problem at all and she loved it too!! Mom is very organized by nature. Next, I showed mom laminated, rectangular cards with a colored rectangle in the middle (one color at a time) and I asked her to find the matching colored paper clips and clip them to the card. It was hard for mom to maneuver her hands at first, but she did it! She said, “Wow. My fingers feel like they have coal on them” meaning it was hard to move them the way she wanted to. Mom held the card in her left hand and placed the paper clips on with her right hand. At one point, mom needed me to visually model how to put the clip on the paper and then she quickly imitated what I had shown her! She also repeated the direction a few times saying, “You want me to put them on the card, right?” as she worked. Mom worked hard and then said,”Hmm…why can’t I get these on?” but she persisted. Mom developed a strategy for putting them on the paper. She would take a paper clip in her right hand and slide it along the paper starting in the middle of the paper and moving toward the edge…as the end of the clip hit the edge, it would naturally slide onto the edge of the paper. Mom persisted so much!! She is dedicated. At another point in the task, she asked me, “Why is this so tedious?” I asked if she wanted to do something else and she said no she wanted to put all the clips on the various papers. All together, mom put a total of 46 paper clips on 5 different pieces of laminated paper!!! Mom wanted to do more when we finished!! Next, we used the box my friend, Maureen, made for mom. It is a box that is divided into 11 compartments. There are also 5 different types of flat, cut out baseball item pieces. There are about 12 pieces of each item…so for example, there are 12 white baseballs, 12 bats, 12 black baseball caps, 12 white caps, and 12 catcher’s mitts. I put them into a huge pile all mixed together on the table. Mom had to sort them into the various compartments. She did well with this activity…80% accuracy independently. Next, we used the letter cubes. These are cubes that have various letters on them either in isolation or in combinations. Mom set about spelling some words. She was being silly about it though!
Speech therapy/feeding therapy came next. The therapist said that mom should be back on a full meal plan by Monday at the latest. Tomorrow she will have breakfast, lunch and dinner. Friday is the angiogram so mom won’t eat anything that day and the therapist wants to be sure someone is with mom to eat besides just the aides at first. Mom ate noodles with sauce and chicken parmesan with string beans and juice. Mom ate the noodles and did so really well and independently. Any time she would drop some food on her bib, mom would say, “Oh God! Look at the mess I am making!” She had a great system for eating. Her chair is far from her table so she needs to balance the food on the utensil for a long period of time—but she does it. Mom completes this task by holding the food on the utensil with her right hand and then following underneath with a napkin in her left hand to catch the spills!!! Mom ate the meal quickly and efficiently. I teased and asked her for something to eat and mom said, “Go get a plate.” Mom also was self-conscious about spills and said, “I don’t want people to think ‘Oh look, she doesn’t know how to eat.” Another time, mom looked like she was done eating so the therapist asked her if she was done and dad answered, “Yes, she’s finished.” Mom replied, “Oh I guess so Jean says I’m done!” Too funny!!!!Then the speech therapist said that yesterday mom said “I don’t like oatmeal” and the therapist said, “Your daughter told me you do” and mom said, “Yeah, well, she lied!”
OT (Occupational Therapy) came in next. We showed the OT what mom did with the paper clips and the sorting activity. The OT worked on dressing skills with mom next. We used a shirt that was mom’s own shirt today. mom was able to grab the shirt from the bottom (the OT gathered it for her) and to put it over her head independently!! The OT taught mom the next few steps---find the hole and then push her hands/arms through. Mom did most of the task independently though she did need some help. Mom was able to pull the shirt down pretty well! At one point, dad asked mom to take the shirt off and mom said, “___said I’m not up that step yet!” and made a face at dad! Then the OT asked her to take her shirt off and mom stuck her tongue out at the OT and laughed. Then the OT said to hurry so they could go to PT next and mom said, “OK well you go and I’ll meet you there!!” Too funny!
In PT, the therapists said that mom did very well so they kept her longer to really work her. Mom stood up very straight and very well…holding her own weight once. Mom’s old CNAs came to see her again today. They kissed her and hugged her and asked how she was. They asked her how she was and what was new. I told mom to tell them what she did last night and mom said, “I was bad” and I told them mom climbed out of bed. The CNA said mom is good. And mom said, “Yeah but when I’m bad I’m really bad.” We all laughed.
Dad and mom did the calendar today. Dad asked, “Yesterday was Tuesday so today is what day?” Mom said,”Wednesday.” Dad said, “Yesterday was the 26th so today is the…” Mom said, “27th” Then mom and dad looked at the “All About Me Book.” We included a letter from the choir in the book and mom saw it and said, “Ohhh…this is from my choir” and read the whole thing. Mom read the “Love Notes to Dotty” book next. She read all the notes we all wrote to her over the last year. We started the “Love Notes to Dotty” book last summer…everyone who visited mom wrote a note to her for her to read when she woke up. When mom finished reading some of it, she said she couldn’t believe what everybody wrote about her. Then, out of no where, mom said, “I’m very disappointed today that I didn’t do well in that room before.” She was referring to PT and she said, “I just don’t feel secure.”
The doctor came in to see mom and said that the catheter comes out tomorrow and that mom will go on a 14 day trial of flowmax to strengthen the bladder muscles. The doctor said that mom looks great and is doing really well. I asked about the sodium and potassium but to be honest…mom is doing much better today! She is done with the antibiotic as of last night. So far, she is also remaining awake and alert and lucid all day. The doctor said he’d write a script for bladder training and bed pan use. The doctor said that we don’t really know what caused the urine retention but the doctor wants to try this route first and observe and then go the urologist route if need be. The doctor is also ordering a scan of her bladder tomorrow. I asked her what she wanted to do now…kidding with her and she said NOTHING!
Dad, mom and I went to sit outside for about 2 hours late in the afternoon. Mom said she wanted to just sit and watch people. We talked to people going in and out of the facility who recognized mom and we also made some social phone calls (Aunt Carol, JoAnn, Angelo and Madeline, Lucy, Anthony Michael, Clauida, Terry). Mom enjoyed chatting on the phone with everyone and being outside. She said she doesn’t know why her “left hand is frozen.” We explained that she needs to exercise her hand. Then mom asked to come inside and just sit and watch TV with dad. Mom had a lengthy conversation with Claudia on the phone. She made Claudia cry. Later she told me everything Claudia told her (a few seconds later). When we came back into the room, mom was trying to put the TV on but couldn’t do it…so I did a hand-over-hand prompt. Mom yelled at me and said, “Stop it. Give ME a chance!” Mom asked me to cut her nails when we were outside. When we came in, I began to type my notes of her day and stopped to clip her nails and mom said, “No, no…you do what you have to do. You’re doing something for school now aren’t you?” Mom also asked me if I had to teach today and what class! She also overheard me telling dad that Con would iron mom’s outfit for Friday and mom yelled at me and told me, “Oh Con doesn’t have to do my ironing STOP!”
Claudia came to be with mom tonight. Claudia showed mom a picture of herself crying over buying things for Ava to bring to college and mom laughed and said that’s just what my mother would do! Before I left, they took the catheter out!! Yippeee!!!Mom began to get a bit anxious once she was in bed and in her pjs....I feel so badly for her. She had a wonderful day otherwise. Pray she stays in bed and sleeps through the night....
"Now may the Lord of peace himself give you peace at all times and in every way. " 2 Thessalonians 3:16
I woke this morning early to the sound of my phone ringing (the call in the middle of the night…oh boy). The caller ID said the name of the facility and so my heart jumped. The night nurse called to tell me that as she passed mom’s room last night at 2 a.m., the nurse found mom sitting on the mat on the floor beside her bed looking around. The nurse said mom was pointing at the wheelchair and appeared to be fine. Mom was put back into bed and inspected for any signs of harm. Mom appeared to be just fine. The nurse said that mom had been very agitated from 9 p.m. through 2 a.m. The nurse sat with mom to calm her down from 2 -3 a.m. and then mom was checked every 15 minutes to see how she was. Thank God she wasn’t hurt. QUESTIONS….Why didn’t the bed alarm go off? If it did go off, why wasn’t mom tended to immediately? How long was mom on the floor? Why weren’t the notes from downstairs in the old unit transferred upstairs to the new unit???
Anthony and I went to see mom really early this morning. Mom kept asking Anthony why he was here with her so early. It appears that mom remembers that Anthony doesn’t come to wake her in the morning. Then, after hearing that Anthony was worried about her, mom apologized over and over for being “a pain in the neck” to everyone. So like mom. I asked her what happened last night and she said nothing and then I asked if she slept last night and she said she didn’t. I told her we heard she was on the floor last night and mom said, “Well…well.. actually, I got out of bed and there’s a long, blue mat on the floor and I was sitting on that.” She remembered!! I asked why she got up and she said because she wanted to go to the bathroom. I told her, and also reviewed with her, that she needs to ring the bell and ask the nurse for a bed pan for now until she can walk better. But…when I asked mom a few minutes later what she should do if she needs the bed pan she said, “Get up and go to the bathroom.” She laughed a bit though so I am wondering if she is just ‘pulling my leg.’
I left for work and Dad joined Anthony and mom. Anthony said that mom had breakfast and read magazines and talked while I was gone. Mom ate breakfast by herself!!! BUT the speech therapist gave mom PANCAKES!!!! With SYRUP!!! God help us. I inquired as to whether the blood work and urinalysis from the hospital pre-op testing was back yet or not and was told it hadn’t come yet. The Physician’s Assistant saw mom yesterday and has an order in for mom to be seen by the resident doctor and then by an urologist. I am hoping that mom doesn’t lose the sensation to eliminate from having a catheter for so long….right now, she still gets the urge to go which is critical toward being able to use a toilet again. I spoke to the speech therapist when I returned and was told that mom will be on a full diet tomorrow---I am not sure if we are allowed to feed her or if the therapist still has to be there or not. The therapist is ordering a chest x-ray to see if mom’s chest is clear.
As an aside…we started all over again regarding the family/patient lounge conditions… Each floor and unit had a lounge with AC and a bathroom. Each lounge had many issues regarding these items…!! I had to call maintenance to get them all up and running appropriately. So far, on this floor, the bathroom door doesn’t lock (it’s broken) and the soap dispenser is also broken. The ACs were also not working. After 4 phone calls to maintenance, the ACs now work but the bathroom door still doesn’t lock and the soap is a no go too!
I put mom’s make up on next. And I gave her a hair cut too. Next, we did some cognitive activities. The first one we did was with paper clips. Claudia had bought mom some 2 inch long plastic, colored paper clips. I threw them in a pile on the table and asked her to sort them by color saying, “OK, can you find all the yellow ones and put them in a pile?” Then we did the same for all the other colors (yellow, orange, red, green and blue). Mom did this activity with no problem at all and she loved it too!! Mom is very organized by nature. Next, I showed mom laminated, rectangular cards with a colored rectangle in the middle (one color at a time) and I asked her to find the matching colored paper clips and clip them to the card. It was hard for mom to maneuver her hands at first, but she did it! She said, “Wow. My fingers feel like they have coal on them” meaning it was hard to move them the way she wanted to. Mom held the card in her left hand and placed the paper clips on with her right hand. At one point, mom needed me to visually model how to put the clip on the paper and then she quickly imitated what I had shown her! She also repeated the direction a few times saying, “You want me to put them on the card, right?” as she worked. Mom worked hard and then said,”Hmm…why can’t I get these on?” but she persisted. Mom developed a strategy for putting them on the paper. She would take a paper clip in her right hand and slide it along the paper starting in the middle of the paper and moving toward the edge…as the end of the clip hit the edge, it would naturally slide onto the edge of the paper. Mom persisted so much!! She is dedicated. At another point in the task, she asked me, “Why is this so tedious?” I asked if she wanted to do something else and she said no she wanted to put all the clips on the various papers. All together, mom put a total of 46 paper clips on 5 different pieces of laminated paper!!! Mom wanted to do more when we finished!! Next, we used the box my friend, Maureen, made for mom. It is a box that is divided into 11 compartments. There are also 5 different types of flat, cut out baseball item pieces. There are about 12 pieces of each item…so for example, there are 12 white baseballs, 12 bats, 12 black baseball caps, 12 white caps, and 12 catcher’s mitts. I put them into a huge pile all mixed together on the table. Mom had to sort them into the various compartments. She did well with this activity…80% accuracy independently. Next, we used the letter cubes. These are cubes that have various letters on them either in isolation or in combinations. Mom set about spelling some words. She was being silly about it though!
Speech therapy/feeding therapy came next. The therapist said that mom should be back on a full meal plan by Monday at the latest. Tomorrow she will have breakfast, lunch and dinner. Friday is the angiogram so mom won’t eat anything that day and the therapist wants to be sure someone is with mom to eat besides just the aides at first. Mom ate noodles with sauce and chicken parmesan with string beans and juice. Mom ate the noodles and did so really well and independently. Any time she would drop some food on her bib, mom would say, “Oh God! Look at the mess I am making!” She had a great system for eating. Her chair is far from her table so she needs to balance the food on the utensil for a long period of time—but she does it. Mom completes this task by holding the food on the utensil with her right hand and then following underneath with a napkin in her left hand to catch the spills!!! Mom ate the meal quickly and efficiently. I teased and asked her for something to eat and mom said, “Go get a plate.” Mom also was self-conscious about spills and said, “I don’t want people to think ‘Oh look, she doesn’t know how to eat.” Another time, mom looked like she was done eating so the therapist asked her if she was done and dad answered, “Yes, she’s finished.” Mom replied, “Oh I guess so Jean says I’m done!” Too funny!!!!Then the speech therapist said that yesterday mom said “I don’t like oatmeal” and the therapist said, “Your daughter told me you do” and mom said, “Yeah, well, she lied!”
OT (Occupational Therapy) came in next. We showed the OT what mom did with the paper clips and the sorting activity. The OT worked on dressing skills with mom next. We used a shirt that was mom’s own shirt today. mom was able to grab the shirt from the bottom (the OT gathered it for her) and to put it over her head independently!! The OT taught mom the next few steps---find the hole and then push her hands/arms through. Mom did most of the task independently though she did need some help. Mom was able to pull the shirt down pretty well! At one point, dad asked mom to take the shirt off and mom said, “___said I’m not up that step yet!” and made a face at dad! Then the OT asked her to take her shirt off and mom stuck her tongue out at the OT and laughed. Then the OT said to hurry so they could go to PT next and mom said, “OK well you go and I’ll meet you there!!” Too funny!
In PT, the therapists said that mom did very well so they kept her longer to really work her. Mom stood up very straight and very well…holding her own weight once. Mom’s old CNAs came to see her again today. They kissed her and hugged her and asked how she was. They asked her how she was and what was new. I told mom to tell them what she did last night and mom said, “I was bad” and I told them mom climbed out of bed. The CNA said mom is good. And mom said, “Yeah but when I’m bad I’m really bad.” We all laughed.
Dad and mom did the calendar today. Dad asked, “Yesterday was Tuesday so today is what day?” Mom said,”Wednesday.” Dad said, “Yesterday was the 26th so today is the…” Mom said, “27th” Then mom and dad looked at the “All About Me Book.” We included a letter from the choir in the book and mom saw it and said, “Ohhh…this is from my choir” and read the whole thing. Mom read the “Love Notes to Dotty” book next. She read all the notes we all wrote to her over the last year. We started the “Love Notes to Dotty” book last summer…everyone who visited mom wrote a note to her for her to read when she woke up. When mom finished reading some of it, she said she couldn’t believe what everybody wrote about her. Then, out of no where, mom said, “I’m very disappointed today that I didn’t do well in that room before.” She was referring to PT and she said, “I just don’t feel secure.”
The doctor came in to see mom and said that the catheter comes out tomorrow and that mom will go on a 14 day trial of flowmax to strengthen the bladder muscles. The doctor said that mom looks great and is doing really well. I asked about the sodium and potassium but to be honest…mom is doing much better today! She is done with the antibiotic as of last night. So far, she is also remaining awake and alert and lucid all day. The doctor said he’d write a script for bladder training and bed pan use. The doctor said that we don’t really know what caused the urine retention but the doctor wants to try this route first and observe and then go the urologist route if need be. The doctor is also ordering a scan of her bladder tomorrow. I asked her what she wanted to do now…kidding with her and she said NOTHING!
Dad, mom and I went to sit outside for about 2 hours late in the afternoon. Mom said she wanted to just sit and watch people. We talked to people going in and out of the facility who recognized mom and we also made some social phone calls (Aunt Carol, JoAnn, Angelo and Madeline, Lucy, Anthony Michael, Clauida, Terry). Mom enjoyed chatting on the phone with everyone and being outside. She said she doesn’t know why her “left hand is frozen.” We explained that she needs to exercise her hand. Then mom asked to come inside and just sit and watch TV with dad. Mom had a lengthy conversation with Claudia on the phone. She made Claudia cry. Later she told me everything Claudia told her (a few seconds later). When we came back into the room, mom was trying to put the TV on but couldn’t do it…so I did a hand-over-hand prompt. Mom yelled at me and said, “Stop it. Give ME a chance!” Mom asked me to cut her nails when we were outside. When we came in, I began to type my notes of her day and stopped to clip her nails and mom said, “No, no…you do what you have to do. You’re doing something for school now aren’t you?” Mom also asked me if I had to teach today and what class! She also overheard me telling dad that Con would iron mom’s outfit for Friday and mom yelled at me and told me, “Oh Con doesn’t have to do my ironing STOP!”
Claudia came to be with mom tonight. Claudia showed mom a picture of herself crying over buying things for Ava to bring to college and mom laughed and said that’s just what my mother would do! Before I left, they took the catheter out!! Yippeee!!!Mom began to get a bit anxious once she was in bed and in her pjs....I feel so badly for her. She had a wonderful day otherwise. Pray she stays in bed and sleeps through the night....
"Now may the Lord of peace himself give you peace at all times and in every way. " 2 Thessalonians 3:16
Tuesday, July 26, 2011
Mom Update, July 26, 2011, Tuesday
I began the day with mom this morning. She was asleep but I had to wake her because the speech therapist was supposed to come this morning to feed her breakfast. Mom woke easily but asked me to leave her alone. I explained she needed to get up in order to eat. The CNA and nurse helped to lift her up in the bed properly so she would be ready to eat. I asked her nurse about getting higher floor mats at the sides of the bed. The nurse said it would be looked into (even though the request went in yesterday). I also asked about the catheter and foley bag and when they’d be removed. The problem is that no one on this floor really knows mom yet, so making recommendations…is hard to do. We get generic, stock answers oftentimes. I was told that mom would need to be re-evaluated by an outside urologist in order to have the catheter and foley removed. I was also told that a review of how many UTIs mom has had over the last year would be necessary in order to determine the cause of her recent urinary retention (holding in her urine). The retention could be due to infection, frequent occurrence of infections, brain injury…only a urologist would know for certain. Tests would be conducted like sonograms…if necessary to go the urologist route. As we spoke more, I told them that the doctor here at the facility put the catheter in. Then the nurse said she would ask the physician’s assistant to check on mom and do an assessment today (we love the PA). I put Rosemary oil on mom’s fingers this morning because the fingers on her RIGHT hand were stiff when she woke. This is not usual. I had mom smell the various oils too—frankincense and cinnamon and rosemary…and also the vanilla. Mom giggled and smelled and made faces accordingly. Mom fell back to sleep before the speech therapist and breakfast came. She was snoring again. I haven’t heard her snore in a while. The curtain around her bed was also closed and drawn when I arrived. I asked to make sure it is open for observation.
Mom’s roommate is a cute little old lady. She is teeny tiny. When they were first together, the roommate screamed and cried. She doesn’t do that now. Last night, the roommate wanted to go to bed to watch the Yankee game (uh-oh…a Yankee fan in the MET room!! Hahaha!), but the night CNA , a very young person, wouldn’t put her to bed unless she was going to lie down and go to sleep. The roommate wanted to go to bed and sit up to watch the game but the aide insisted that, if she was going to sit up, she needed to stay in the wheelchair. What happened to a person’s autonomy, independence, dignity??? Just because the roommate is very old, her requests were being ignored. Claudia spoke to the nurse and the roommate was moved to her bed and sat up with no problem. The nurse was shocked at the CNAs behavior in the matter. The roommate called out to mom and I this morning---saying hello and asking how we were. She is very cute at times. The roommate told me she wanted to reach her daughter but couldn’t remember the phone number. I told her to ask the nurse to call for her. I rang the buzzer and the nurse came and assured her that her daughter would be called. What a difficult plight for everyone involved…patients and nurses. Things are tight so staffing is often too short, so even if you are a nurse who cares, you are squeezed for time constantly. Patients are left to fend for themselves and can’t do so or are ignored. It’s sad for everyone.
I had to leave for work just as the speech therapist was arriving. I asked the therapist to please leave me a note about how mom did at breakfast and lunch. I saw quickly that there were scrambled eggs, oatmeal, milk (thickened vanilla), coffee, and a roll on the tray. Mom was still asleep when I left. I also stopped by the nurse to speak about mom and the mitt situation and mom’s anxiety at night. The nurse said that mom’s anxiety could be triggered by the change in her environment!! When I stopped to think about it, yes, the problems started the 2nd night mom was on that unit. Before that, there were no sleep problems. The nurse said to give mom a chance to get used to her new surroundings. This, coupled with the UTI, could very well be the cause for all the confusion, delusions, and sleeplessness mom has been experiencing at night. But…mom started all the problems before she changed rooms…however maybe it’s a combination of both.
When Anthony and dad arrived today mom was awake and alert and happy. Carmine was just leaving but he couldn’t work with mom because they were showering her while he was there. He told Anthony to ask the speech person about having mom tuck her chin to her chest while she eats which will cut down on choking and/or aspirating (the therapist told Anthony mom isn’t up to that yet and wanted to know how Anthony knew about that technique).
Donna joined dad and Anthony next. Donna said mom was great and did well with speech, eating and with dad but mom seemed confused with the OT. Mom seemed to misunderstand pronouns—you and me---kept trying to put the shirt on Anthony, dad or the therapist. They did the calendar and mom read the days but had a problem looking for the next number to read…she kept going to the right instead of the left…she couldn’t track even when they pointed. Otherwise, Donna said mom did great today. Mom had OT and knew her colors, followed directions, but couldn’t manage to put a T-shirt over her head. However, Anthony, dad and Donna had mom do this for them later and mom did it fine.
Anthony worked on mom’s arms and legs, mostly her arms today. He did all kinds of reaching and stretching so that she could lift them above her head. Then mom left for PT. Mom wouldn’t take any steps at PT because she said she was afraid. But mom did stand at the walker and stand straighter than before.
The speech therapist gave mom breakfast and mom ate it all. The therapist also gave mom lunch—pork, carrots, and potatoes. Mom ate it all independently but the therapist didn’t cut the meat so Donna told her to cut it and the therapist did finally do that.
John and Ava came this evening to put mom to bed. Mom was asleep when they arrived and stayed asleep for most of the visit. Mom woke but didn’t talk much…predominantly, she slept. At one point, she finally woke up and hung out with them. Ava put the mitts on mom slowly and while they were on mom, mom asked Ava to take one off so she could scratch her nose. Ava said she would scratch it for mom, but mom said Ava wouldn’t find the spot. So Ava removed one glove…and lickety-split, mom removed the other mitt and threw them across the room and laughed and stuck her tongue out at Ava!!!!
"Be joyful in hope, patient in trouble, and persistent in prayer." Romans 12:12
Mom’s roommate is a cute little old lady. She is teeny tiny. When they were first together, the roommate screamed and cried. She doesn’t do that now. Last night, the roommate wanted to go to bed to watch the Yankee game (uh-oh…a Yankee fan in the MET room!! Hahaha!), but the night CNA , a very young person, wouldn’t put her to bed unless she was going to lie down and go to sleep. The roommate wanted to go to bed and sit up to watch the game but the aide insisted that, if she was going to sit up, she needed to stay in the wheelchair. What happened to a person’s autonomy, independence, dignity??? Just because the roommate is very old, her requests were being ignored. Claudia spoke to the nurse and the roommate was moved to her bed and sat up with no problem. The nurse was shocked at the CNAs behavior in the matter. The roommate called out to mom and I this morning---saying hello and asking how we were. She is very cute at times. The roommate told me she wanted to reach her daughter but couldn’t remember the phone number. I told her to ask the nurse to call for her. I rang the buzzer and the nurse came and assured her that her daughter would be called. What a difficult plight for everyone involved…patients and nurses. Things are tight so staffing is often too short, so even if you are a nurse who cares, you are squeezed for time constantly. Patients are left to fend for themselves and can’t do so or are ignored. It’s sad for everyone.
I had to leave for work just as the speech therapist was arriving. I asked the therapist to please leave me a note about how mom did at breakfast and lunch. I saw quickly that there were scrambled eggs, oatmeal, milk (thickened vanilla), coffee, and a roll on the tray. Mom was still asleep when I left. I also stopped by the nurse to speak about mom and the mitt situation and mom’s anxiety at night. The nurse said that mom’s anxiety could be triggered by the change in her environment!! When I stopped to think about it, yes, the problems started the 2nd night mom was on that unit. Before that, there were no sleep problems. The nurse said to give mom a chance to get used to her new surroundings. This, coupled with the UTI, could very well be the cause for all the confusion, delusions, and sleeplessness mom has been experiencing at night. But…mom started all the problems before she changed rooms…however maybe it’s a combination of both.
When Anthony and dad arrived today mom was awake and alert and happy. Carmine was just leaving but he couldn’t work with mom because they were showering her while he was there. He told Anthony to ask the speech person about having mom tuck her chin to her chest while she eats which will cut down on choking and/or aspirating (the therapist told Anthony mom isn’t up to that yet and wanted to know how Anthony knew about that technique).
Donna joined dad and Anthony next. Donna said mom was great and did well with speech, eating and with dad but mom seemed confused with the OT. Mom seemed to misunderstand pronouns—you and me---kept trying to put the shirt on Anthony, dad or the therapist. They did the calendar and mom read the days but had a problem looking for the next number to read…she kept going to the right instead of the left…she couldn’t track even when they pointed. Otherwise, Donna said mom did great today. Mom had OT and knew her colors, followed directions, but couldn’t manage to put a T-shirt over her head. However, Anthony, dad and Donna had mom do this for them later and mom did it fine.
Anthony worked on mom’s arms and legs, mostly her arms today. He did all kinds of reaching and stretching so that she could lift them above her head. Then mom left for PT. Mom wouldn’t take any steps at PT because she said she was afraid. But mom did stand at the walker and stand straighter than before.
The speech therapist gave mom breakfast and mom ate it all. The therapist also gave mom lunch—pork, carrots, and potatoes. Mom ate it all independently but the therapist didn’t cut the meat so Donna told her to cut it and the therapist did finally do that.
John and Ava came this evening to put mom to bed. Mom was asleep when they arrived and stayed asleep for most of the visit. Mom woke but didn’t talk much…predominantly, she slept. At one point, she finally woke up and hung out with them. Ava put the mitts on mom slowly and while they were on mom, mom asked Ava to take one off so she could scratch her nose. Ava said she would scratch it for mom, but mom said Ava wouldn’t find the spot. So Ava removed one glove…and lickety-split, mom removed the other mitt and threw them across the room and laughed and stuck her tongue out at Ava!!!!
"Be joyful in hope, patient in trouble, and persistent in prayer." Romans 12:12
Monday, July 25, 2011
Mom Update, July 25, 2011, Monday
Dad and I began the day with mom this morning. Mom’s legs were on the side of the bed and one was hanging off the bed! She was very agitated and confused as well. She was trying to tell me that she was “upset” because she didn’t know what “group” she belonged to. She was trying very hard to tell us something but couldn’t get the words out correctly. Mom asked for her make up so I put it on for her. Dad said not to do it because he has trouble getting it off and makes a mess of himself and mom in the process and mom laughed! Mom’s nurse came into the room to take her blood pressure and mom said, “I had my temperature taken already” (because I said that was what was going to be done)—and mom was RIGHT!! It had been taken already!! She remembered! This is progress. Mom’s CNA said she dropped her children off early at the sitter to get here to get mom ready for the doctor appointment today. Dad asked mom what day was today; he said, “Yesterday was the 24 so what is today?” Mom said, “The 23rd?” So I said, “23 came BEFORE 24 so what comes AFTER 24?” Mom said, “Oh…25 then.” Mom gets oriented very quickly in the mornings once we are here though thank God. Mom’s CNA from the daytime worked day and night yesterday and she said that, after Terry left last night, mom was very, very agitated and kept trying to climb out of bed. The aide said that there will be a request for higher mats to be put beside each side of the bed so mom can’t climb out easily. Mom asked about the doctor’s visit today for the testing and she wanted to know the name of the doctor. She also wanted to know if that doctor was the only one involved with her. She also asked again about what happened to her. Dad and I explained everything to mom and she said, “Boy…I would have to say I don’t remember any of that at all.” She listened intently and asked many relevant questions about what happened to her. Dad told mom that we all come every day to help her get better and that she is getting better every day. We hold Aunt Carol up as our success story for mom. At one point, mom said, “Am I going to die? Dad is so serious.” Dad said today that, one night a year ago, right before all this happened to mom, mom got choked up one night and told dad, “I want to die before you because I don’t want to be alone without you.” Funny how things work out.
Once we made it to the hospital for the pre-op testing, mom and I did finger exercises. I held my hand up before her and asked her to imitate movements I was making. Mom did them all—slowly but she did them. She also was able to imitate the finger movement requests that the intake evaluation nurse asked her too. The nurse at the hospital told us to ask the facility to do bladder training with mom---get her using the bed pan and toilet again asap because we told the nurse about mom’s urine retention problem of late. Mom still has the foley bag for her urinary tract infection. The nurse told us to have it removed asap. The nurse did extensive urinanalysis tests to determine if the urinary tract infection went away yet or not—that way we can request that the catheter comes out asap. The nurse also said we can request an eye exam for mom using pictures rather than letters if need be. I will ask about this. The nurse asked mom to touch each individual finger of each hand to the thumb on the same hand and mom did this with both hands! While we waited in the waiting room, mom asked dad what he was going to make for dinner and smiled. She told us all she was sorry it was taking so long and that we should all go eat lunch because we are probably hungry. Mom will be at the hospital all day on Friday for the cerebral angiogram. We had a mishap with the van the company sent to bring mom from the hospital back to the facility. They took well over an hour to get to the hospital to pick mom up and when they arrived, it was the wrong type of van!!! It was a van for vent patients which meant there was a huge guerney and no room for the wheelchair. After I called the company and straightened out the confusion, it took over another hour for the right van to come. All together, it took more than 2 ½ hours of waiting for a transport vehicle to get mom from the hospital back to the facility. When it arrived, we found that the dispatcher of the transport place had driven the vehicle!! Not EMTs!! When the person lifted mom into the vehicle using the lift the person stood on the back of the lift with mom and the wheelchair. I then decided to stay around and doubly check that all was done correctly in transporting mom (safety belts…). Mom’s anxiety grew and grew the longer she had to wait. She began to speak irrelevantly. She began to ask for the scissors again. I tried to distract mom by playing, “I see something___” and naming a color. Mom did well with the game. Next, we called Nancy (our cousin) and Anthony and mom talked on the phone to them. After a while, mom said, “Kathy, I am sitting here asking God to let me out. To let me get home.” Mom’s aide and I moved her up in the chair to make her more comfortable. As the time passed, mom grew more and more upset until, finally, she cried a bit and dad stood beside her and held her in his arms and comforted her.
When mom returned to the facility, she was much calmer and focused. The speech therapist came to see mom and gave mom some apple juice and 3 graham crackers to eat. Mom devoured them!!! Then mom asked for water. The therapist gave mom regular bottled water --- not thickened liquid and mom drank it all!!! No problem!! I tried to tell mom something while she was eating---a direction---and mom smirked and said, “Oh shut up!” and then laughed. I told the speech therapist not to give mom binding food given the constipation. The therapist never checked mom’s chart to see that was an issue. The therapist is going to begin to give mom breakfast and lunch tomorrow (the therapist will be present to watch how mom does). This will be followed by having dinner later in the week. Hopefully, next week mom will be back on food! I told the therapist not to give mom a lot of carbohydrates and to select protein and healthy choices. No waffles, pancakes, syrup… It makes mom woozy and tired. After she finished eating, mom and I wrote on the white board with the new multi-colored markers I bought her. She spelled words and I wrote. Sometimes, mom has been spelling what she wants to say when she has trouble finding the right word to say. Today, she spelled w-a-t-e-r when she wanted to ask for water and had difficulty finding the right word. Mom also couldn’t remember my name at the hospital at one point (she was beginning to get anxious then) and she called me by my last name… “Mrs.____.” Before I left, mom asked if Claudia and John were coming tonight. I told her it would be only Claudia and mom said, “Oh when?” I told her it would be around 6 p.m. and mom said, “Gee that’s a long time from now!”
Claudia came to put mom to bed tonight. Dad left. Claudia said mom wasn’t bad at all. A little restless but not bad. Claudia invented a new game…a picture of a park scene and a butterfly that is detached from the scene. Claudia asks mom to put the butterfly various places on the scene! Mom loved it. Mom got about 50% of the directions correct. Then they watched the MET game and mom asked many questions about the game. Claudia gave mom the baseball card of the player up at bat and mom would read the card while the player batted. Then Claudia put the mitts on mom and they looked at the question cards—pictures of people and things and you ask a question (written on the back of the card) and mom answers the question. A verbal reasoning task. Mom loves to do the cards!!! Mom calmly tried to get the mitts off after a while. Mom was still awake when Claudia left. Mom told her to go to sleep. At 9:00 p.m. though, mom got really agitated and loopy. It is like the key time all this behavior begins. It is distressing to see the change in mom from last week to this one. She was much more lucid last week.I pray all this delusional behavior subsides when the UTI disappears…..
“The Lord gives strength to His people; the Lord blesses His people with peace.” Psalm 29:11
Once we made it to the hospital for the pre-op testing, mom and I did finger exercises. I held my hand up before her and asked her to imitate movements I was making. Mom did them all—slowly but she did them. She also was able to imitate the finger movement requests that the intake evaluation nurse asked her too. The nurse at the hospital told us to ask the facility to do bladder training with mom---get her using the bed pan and toilet again asap because we told the nurse about mom’s urine retention problem of late. Mom still has the foley bag for her urinary tract infection. The nurse told us to have it removed asap. The nurse did extensive urinanalysis tests to determine if the urinary tract infection went away yet or not—that way we can request that the catheter comes out asap. The nurse also said we can request an eye exam for mom using pictures rather than letters if need be. I will ask about this. The nurse asked mom to touch each individual finger of each hand to the thumb on the same hand and mom did this with both hands! While we waited in the waiting room, mom asked dad what he was going to make for dinner and smiled. She told us all she was sorry it was taking so long and that we should all go eat lunch because we are probably hungry. Mom will be at the hospital all day on Friday for the cerebral angiogram. We had a mishap with the van the company sent to bring mom from the hospital back to the facility. They took well over an hour to get to the hospital to pick mom up and when they arrived, it was the wrong type of van!!! It was a van for vent patients which meant there was a huge guerney and no room for the wheelchair. After I called the company and straightened out the confusion, it took over another hour for the right van to come. All together, it took more than 2 ½ hours of waiting for a transport vehicle to get mom from the hospital back to the facility. When it arrived, we found that the dispatcher of the transport place had driven the vehicle!! Not EMTs!! When the person lifted mom into the vehicle using the lift the person stood on the back of the lift with mom and the wheelchair. I then decided to stay around and doubly check that all was done correctly in transporting mom (safety belts…). Mom’s anxiety grew and grew the longer she had to wait. She began to speak irrelevantly. She began to ask for the scissors again. I tried to distract mom by playing, “I see something___” and naming a color. Mom did well with the game. Next, we called Nancy (our cousin) and Anthony and mom talked on the phone to them. After a while, mom said, “Kathy, I am sitting here asking God to let me out. To let me get home.” Mom’s aide and I moved her up in the chair to make her more comfortable. As the time passed, mom grew more and more upset until, finally, she cried a bit and dad stood beside her and held her in his arms and comforted her.
When mom returned to the facility, she was much calmer and focused. The speech therapist came to see mom and gave mom some apple juice and 3 graham crackers to eat. Mom devoured them!!! Then mom asked for water. The therapist gave mom regular bottled water --- not thickened liquid and mom drank it all!!! No problem!! I tried to tell mom something while she was eating---a direction---and mom smirked and said, “Oh shut up!” and then laughed. I told the speech therapist not to give mom binding food given the constipation. The therapist never checked mom’s chart to see that was an issue. The therapist is going to begin to give mom breakfast and lunch tomorrow (the therapist will be present to watch how mom does). This will be followed by having dinner later in the week. Hopefully, next week mom will be back on food! I told the therapist not to give mom a lot of carbohydrates and to select protein and healthy choices. No waffles, pancakes, syrup… It makes mom woozy and tired. After she finished eating, mom and I wrote on the white board with the new multi-colored markers I bought her. She spelled words and I wrote. Sometimes, mom has been spelling what she wants to say when she has trouble finding the right word to say. Today, she spelled w-a-t-e-r when she wanted to ask for water and had difficulty finding the right word. Mom also couldn’t remember my name at the hospital at one point (she was beginning to get anxious then) and she called me by my last name… “Mrs.____.” Before I left, mom asked if Claudia and John were coming tonight. I told her it would be only Claudia and mom said, “Oh when?” I told her it would be around 6 p.m. and mom said, “Gee that’s a long time from now!”
Claudia came to put mom to bed tonight. Dad left. Claudia said mom wasn’t bad at all. A little restless but not bad. Claudia invented a new game…a picture of a park scene and a butterfly that is detached from the scene. Claudia asks mom to put the butterfly various places on the scene! Mom loved it. Mom got about 50% of the directions correct. Then they watched the MET game and mom asked many questions about the game. Claudia gave mom the baseball card of the player up at bat and mom would read the card while the player batted. Then Claudia put the mitts on mom and they looked at the question cards—pictures of people and things and you ask a question (written on the back of the card) and mom answers the question. A verbal reasoning task. Mom loves to do the cards!!! Mom calmly tried to get the mitts off after a while. Mom was still awake when Claudia left. Mom told her to go to sleep. At 9:00 p.m. though, mom got really agitated and loopy. It is like the key time all this behavior begins. It is distressing to see the change in mom from last week to this one. She was much more lucid last week.I pray all this delusional behavior subsides when the UTI disappears…..
“The Lord gives strength to His people; the Lord blesses His people with peace.” Psalm 29:11
Sunday, July 24, 2011
Mom Update, July 24, 2011, Sunday
Mom’s update July 24, 2011
Claudia wrote: I started the day with mom. She was awake when I came in the room. She said good morning after I said it to her. I fixed her in the bed, put her hearing aids in and put her glasses on and raised the bed. I shut the TV and took out the ipad. I opened the program for counting. There are items on the screen and you touch each item and a number appears on the item. I gave her the stylus and told her to touch each item. She seemed to only touch the items on the right side of the screen. I folded a tissue into a small square and placed it under the right lens of her glasses and had her only use the left eye. She had a lot of difficulty seeing on the left side. I had to prompt her to turn her head and look for the items. She also had a hard time with the verbal direction of touch the items without a number. She didn’t understand the negative command of “without” a number. We did this for a while and then switched to another task. Mom said at one point that stopping would not help her because she can’t learn what to do if we switch games and activities so much. This was a program where there are scrambled letters and you need to take each letter tile and place them in a grid to form a word. She had a difficult time with dragging each letter where they needed to be. She was also distracted by the words on the top and bottom of the screen that labeled the name of the game and the level. I placed two pieces of colored paper on top and bottom so only the letter tiles and grid were present. She did better but was often confused as to where to place the letters. She was also stuck on a previous word and wasn’t aware that she did that word and a new word came up. The CNA came in and changed her and put her in the wheel chair for the day. Anthony, Con, Anthony Michael and Sam came to see mom. We were all talking and laughing. Anthony worked on her legs and mom was pushing with resistance. We then took out the pedals that Barry gave us and she was able to pedal with her arms and hands independently. She did this for a while. She also said she could feel it in her arms. Anthony then took out the ball and we had her try to walk the ball up and down her arm. She had trouble but tried and moved the ball slightly. Then Anthony threw the ball to her and modeled how to throw the ball back. Catching isn’t an issue, throwing is difficult. He demonstrated how to push out and open her hands and arms to throw the ball. She did better with each throw.
Dad came with a big bunch of gladiolas. He put them in a vase for her. We tried to have mom show dad how she pedaled with her hands but mom was confused. She didn’t know where to put her hands. She kept spinning the pedal. She knew she was confused so we stopped and went back to catching and throwing the ball.
Kathy wrote: Lenny, Terry and Kathy came to see mom next. Lenny tried to have mom do the Nintendo Wii games. First, they tried the “Cooking Mama” game. In this game, the person holds the controller and the controller has either a spatula, a spoon, a knife or a frying pan attached to it. Then, a little person comes on the screen of the TV and tells you what ingredient is being put into the recipe and what you need to do with it. For example, when you make an omelet, the person tells you to “cut the onion” and an onion comes on the screen. While you hold the knife that is attached to the controller, you make a cutting motion and the onion on the TV screen gets cut! They played Wii sports too. In this game, you move your arm to bowl or play tennis… Mom was uncertain of where to look at times…she couldn’t remember to look at the TV or where the TV was. Lenny patiently held the controller hand over hand with mom to get her to complete the tasks. Mom started to get frustrated on and off but then she would momentarily focus and enjoy the activity. She was definitely confused about where to look so Lenny stood behind mom and gently moved her head toward the TV, then he would gently let her tilt it to her right (which was her natural tendency—to look toward her right). As Lenny moved mom’s head left or right, he would say, “This is the bookcase”…then tilt her head in the opposite direction and say, “This is the TV” and repeat the process over and over. Lenny would then tilt mom’s head left and move her hand with the remote and say, “One, two, three—eyes on TV” in order to focus mom to look in the right direction. Terry came up with the idea to give mom only one word commands to play like, “Flick” (to move her wrist) or “swing” (to bowl)… this worked well. Most of the time, as the games progressed, mom had a difficult time concentrating on both the TV and her movements in conjunction.
Mom’s CNAs from downstairs came to visit her again this afternoon!! Mom was so thrilled to see them. She kissed them both and talked to them and even threw them kisses good-bye. Mom kept asking dad for something to eat. When dad said she still can’t eat yet, mom stuck out her tongue at dad! Mom called JoAnn and then Madeline (Jo’s mom) and talked on the phone with them both. She told Madeline, “I guess I will never see you again” but Madeline told mom they were coming to see her in a few weeks and mom got so happy and excited.
Mom’s new CNA came to put her to bed and change her. The CNA told us that mom said that she needed to use the “latrine!!!” Then mom asked the CNA to take off her mitts and asked how to get them off so she could “urinate.” Once mom got into bed, she became anxious and loopy again. She began to ask to go to the bathroom over and over and she also asked us to cut the blankets. Terry stayed to put mom to bed tonight. She said that mom was a little confused but mostly calm. Mom didn’t like having the mitts on and she still said and did things that don’t make sense (“I need to cut this…” “Find me a scissor…”). The confusion and “loopiness” starts around the time she is changed and put to bed as well as when her roommate enters the room for the night. This all started last week when the UTI began…so hopefully, we pray it will disappear as soon as the UTI does. Mom goes for pre-op testing tomorrow at the hospital where the shunt and coil were put in. On Friday, mom will get a cerebral angiogram to check on the status of the coil procedure that was done last year when mom had the aneurism and stroke. Pray all goes well and that she also is at peace at night and not agitated or fearful or loopy.
“For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.” 2 Timothy 1:7
Claudia wrote: I started the day with mom. She was awake when I came in the room. She said good morning after I said it to her. I fixed her in the bed, put her hearing aids in and put her glasses on and raised the bed. I shut the TV and took out the ipad. I opened the program for counting. There are items on the screen and you touch each item and a number appears on the item. I gave her the stylus and told her to touch each item. She seemed to only touch the items on the right side of the screen. I folded a tissue into a small square and placed it under the right lens of her glasses and had her only use the left eye. She had a lot of difficulty seeing on the left side. I had to prompt her to turn her head and look for the items. She also had a hard time with the verbal direction of touch the items without a number. She didn’t understand the negative command of “without” a number. We did this for a while and then switched to another task. Mom said at one point that stopping would not help her because she can’t learn what to do if we switch games and activities so much. This was a program where there are scrambled letters and you need to take each letter tile and place them in a grid to form a word. She had a difficult time with dragging each letter where they needed to be. She was also distracted by the words on the top and bottom of the screen that labeled the name of the game and the level. I placed two pieces of colored paper on top and bottom so only the letter tiles and grid were present. She did better but was often confused as to where to place the letters. She was also stuck on a previous word and wasn’t aware that she did that word and a new word came up. The CNA came in and changed her and put her in the wheel chair for the day. Anthony, Con, Anthony Michael and Sam came to see mom. We were all talking and laughing. Anthony worked on her legs and mom was pushing with resistance. We then took out the pedals that Barry gave us and she was able to pedal with her arms and hands independently. She did this for a while. She also said she could feel it in her arms. Anthony then took out the ball and we had her try to walk the ball up and down her arm. She had trouble but tried and moved the ball slightly. Then Anthony threw the ball to her and modeled how to throw the ball back. Catching isn’t an issue, throwing is difficult. He demonstrated how to push out and open her hands and arms to throw the ball. She did better with each throw.
Dad came with a big bunch of gladiolas. He put them in a vase for her. We tried to have mom show dad how she pedaled with her hands but mom was confused. She didn’t know where to put her hands. She kept spinning the pedal. She knew she was confused so we stopped and went back to catching and throwing the ball.
Kathy wrote: Lenny, Terry and Kathy came to see mom next. Lenny tried to have mom do the Nintendo Wii games. First, they tried the “Cooking Mama” game. In this game, the person holds the controller and the controller has either a spatula, a spoon, a knife or a frying pan attached to it. Then, a little person comes on the screen of the TV and tells you what ingredient is being put into the recipe and what you need to do with it. For example, when you make an omelet, the person tells you to “cut the onion” and an onion comes on the screen. While you hold the knife that is attached to the controller, you make a cutting motion and the onion on the TV screen gets cut! They played Wii sports too. In this game, you move your arm to bowl or play tennis… Mom was uncertain of where to look at times…she couldn’t remember to look at the TV or where the TV was. Lenny patiently held the controller hand over hand with mom to get her to complete the tasks. Mom started to get frustrated on and off but then she would momentarily focus and enjoy the activity. She was definitely confused about where to look so Lenny stood behind mom and gently moved her head toward the TV, then he would gently let her tilt it to her right (which was her natural tendency—to look toward her right). As Lenny moved mom’s head left or right, he would say, “This is the bookcase”…then tilt her head in the opposite direction and say, “This is the TV” and repeat the process over and over. Lenny would then tilt mom’s head left and move her hand with the remote and say, “One, two, three—eyes on TV” in order to focus mom to look in the right direction. Terry came up with the idea to give mom only one word commands to play like, “Flick” (to move her wrist) or “swing” (to bowl)… this worked well. Most of the time, as the games progressed, mom had a difficult time concentrating on both the TV and her movements in conjunction.
Mom’s CNAs from downstairs came to visit her again this afternoon!! Mom was so thrilled to see them. She kissed them both and talked to them and even threw them kisses good-bye. Mom kept asking dad for something to eat. When dad said she still can’t eat yet, mom stuck out her tongue at dad! Mom called JoAnn and then Madeline (Jo’s mom) and talked on the phone with them both. She told Madeline, “I guess I will never see you again” but Madeline told mom they were coming to see her in a few weeks and mom got so happy and excited.
Mom’s new CNA came to put her to bed and change her. The CNA told us that mom said that she needed to use the “latrine!!!” Then mom asked the CNA to take off her mitts and asked how to get them off so she could “urinate.” Once mom got into bed, she became anxious and loopy again. She began to ask to go to the bathroom over and over and she also asked us to cut the blankets. Terry stayed to put mom to bed tonight. She said that mom was a little confused but mostly calm. Mom didn’t like having the mitts on and she still said and did things that don’t make sense (“I need to cut this…” “Find me a scissor…”). The confusion and “loopiness” starts around the time she is changed and put to bed as well as when her roommate enters the room for the night. This all started last week when the UTI began…so hopefully, we pray it will disappear as soon as the UTI does. Mom goes for pre-op testing tomorrow at the hospital where the shunt and coil were put in. On Friday, mom will get a cerebral angiogram to check on the status of the coil procedure that was done last year when mom had the aneurism and stroke. Pray all goes well and that she also is at peace at night and not agitated or fearful or loopy.
“For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.” 2 Timothy 1:7
Mom Update, July 23, 2011, Saturday
Lenny and I spent the morning with mom today. She was fast asleep when we arrived. For the most part, we just let her sleep. She is on antibiotics for the urinary tract infection so this can make a person tired. She needs to rest well during this part of her recovery from the infection. We gently tried to wake her by putting her hearing aids in…and talking and singing to her but she grinned a bit and continued to sleep.
Dad stayed with mom last night until almost 10 p.m. (I wish he’d stay at my house on nights like this…I am only 10 minutes away compared to the 50-55 minutes he has to drive to get home—but he won’t do it). Dad said that mom was “loopy” again on and off…agitated and restless. She kept skooching her body down to the bottom of the bed and using her legs to do it and she also kept swinging her legs off the bed as well—all in an attempt to get up and off the bed. She finally settled down and went to sleep around 9:45p.m.
We all went to a memorial service this morning at 11 and then Anthony, Con, Anthony Michael, Sam, Rie, Phil, Michael, Gina and Phil’s parents and dad all went to visit mom. She was asleep when they first arrived but Sammy woke mom and she was pleasant and awake. They all moved down to the lounge (the AC isn’t working well there…yuck!) and talked. Phil said mom was chatting a lot with everyone. She knew everyone’s names though it took her a while to remember Phil’s name. I arrived and joined them all. Mom’s 2 CNAs from downstairs came to visit mom and she was so surprised and happy to see them. They boosted her in the wheelchair and also told us to be sure to request a special cream for her face (eczema). We all talked and mom listened and often tried to enter into the various conversations with us. After a while, mom fell asleep and took a nap. When mom woke, she was bright and cheerful. Most of the company left and mom said to them to come any time. Anthony worked on mom’s legs and mom pushed down a lot with her right leg and just a bit with her left—from the knee and from the ankle (bend knee and hold bottom of foot and mom pushes leg downward—bend ankle up and hold bottom of foot and mom pushes foot downward). We also had mom lift her arms way up over her head and back down again. Next, Anthony held mom’s hands and they ‘rowed’ back and forth pushing and pulling from the trunk/abdomen. We all sang “Row, row, row your boat “ as mom did this and she smiled and sang with us. We went back to mom’s room and mom was put into bed and changed. Her new CNA seems very nice and kind. The CNA has been practicing with mom to get mom to dress herself. Mom was able to put about 1/3 of her shirt on alone!! The aide started mom by putting mom’s hand and arm through the arm of the shirt and then mom finished putting the shirt over her head and on. While we were all in the lounge, mom had been trying to tell us something but she couldn’t speak loud enough so Anthony Michael yelled, “Hey you guys!! Nonny is trying to say something and no one is listening” to which Anthony started to tell Anthony Michael not to yell—but mom looked at Anthony Michael and said, “Thank you Anthony!” We all laughed and then we asked mom what she wanted to say and she said, “Oh, I forget!” We all laughed again!
Dad, Terry and I did a crossword puzzle with mom next:
Clue: Health resorts Mom: Spas
Clue: Actress Turner Mom: Lana
Clue: Singer Baker Mom: Anita
Clue: Noah’s handiwork Mom: Ark
Clue: Cry out loud Mom: Sob
These were done without any clues. Mom frequently asked if there was a clue though, and many times, there wasn’t one yet. Then mom fell asleep. She woke quickly and asked for another clue.
Clue: Wee Mom: Little
Clue: Jeweled crown Mom: Tiara
Clue: Snake charmer’s snake Mom: Cobra
Clue: Poe’s middle name Mom: Allen
Clue: Orange covers Mom: Peels
Clue: Choir accompaniment Mom: Organ
Clue: Funicello’s Costar…Frankie… Mom: Avalon
Clue: Beach shoe Mom: Sandal
Claudia and Ava came next and gave mom and dad their anniversary present from Claudia’s family and Terry---Nintendo Wii Cooking Mama World Kitchen. This is a Nintendo Wii game that mimics cooking on the TV---you move the utensils in answer to a direction and it actually happens on the TV.
Just before dad and I left mom started to get anxious. Claudia and Ava stayed with mom and tried to calm her down after we left. They played calm music and Ava wrote names on the wipe off board and asked mom who each person was and who they were related to. Then mom had a bowel issue again and tried to take her catheter out. Claudia had to wrestle it out of her hand. She was very unsettled. They calmed her down and shut the lights. They put the posey’s in her hands and turned the TV on. The watched a movie. Mom was very calm at that point.
Peace and love,
Kathy and Claudia
Dad stayed with mom last night until almost 10 p.m. (I wish he’d stay at my house on nights like this…I am only 10 minutes away compared to the 50-55 minutes he has to drive to get home—but he won’t do it). Dad said that mom was “loopy” again on and off…agitated and restless. She kept skooching her body down to the bottom of the bed and using her legs to do it and she also kept swinging her legs off the bed as well—all in an attempt to get up and off the bed. She finally settled down and went to sleep around 9:45p.m.
We all went to a memorial service this morning at 11 and then Anthony, Con, Anthony Michael, Sam, Rie, Phil, Michael, Gina and Phil’s parents and dad all went to visit mom. She was asleep when they first arrived but Sammy woke mom and she was pleasant and awake. They all moved down to the lounge (the AC isn’t working well there…yuck!) and talked. Phil said mom was chatting a lot with everyone. She knew everyone’s names though it took her a while to remember Phil’s name. I arrived and joined them all. Mom’s 2 CNAs from downstairs came to visit mom and she was so surprised and happy to see them. They boosted her in the wheelchair and also told us to be sure to request a special cream for her face (eczema). We all talked and mom listened and often tried to enter into the various conversations with us. After a while, mom fell asleep and took a nap. When mom woke, she was bright and cheerful. Most of the company left and mom said to them to come any time. Anthony worked on mom’s legs and mom pushed down a lot with her right leg and just a bit with her left—from the knee and from the ankle (bend knee and hold bottom of foot and mom pushes leg downward—bend ankle up and hold bottom of foot and mom pushes foot downward). We also had mom lift her arms way up over her head and back down again. Next, Anthony held mom’s hands and they ‘rowed’ back and forth pushing and pulling from the trunk/abdomen. We all sang “Row, row, row your boat “ as mom did this and she smiled and sang with us. We went back to mom’s room and mom was put into bed and changed. Her new CNA seems very nice and kind. The CNA has been practicing with mom to get mom to dress herself. Mom was able to put about 1/3 of her shirt on alone!! The aide started mom by putting mom’s hand and arm through the arm of the shirt and then mom finished putting the shirt over her head and on. While we were all in the lounge, mom had been trying to tell us something but she couldn’t speak loud enough so Anthony Michael yelled, “Hey you guys!! Nonny is trying to say something and no one is listening” to which Anthony started to tell Anthony Michael not to yell—but mom looked at Anthony Michael and said, “Thank you Anthony!” We all laughed and then we asked mom what she wanted to say and she said, “Oh, I forget!” We all laughed again!
Dad, Terry and I did a crossword puzzle with mom next:
Clue: Health resorts Mom: Spas
Clue: Actress Turner Mom: Lana
Clue: Singer Baker Mom: Anita
Clue: Noah’s handiwork Mom: Ark
Clue: Cry out loud Mom: Sob
These were done without any clues. Mom frequently asked if there was a clue though, and many times, there wasn’t one yet. Then mom fell asleep. She woke quickly and asked for another clue.
Clue: Wee Mom: Little
Clue: Jeweled crown Mom: Tiara
Clue: Snake charmer’s snake Mom: Cobra
Clue: Poe’s middle name Mom: Allen
Clue: Orange covers Mom: Peels
Clue: Choir accompaniment Mom: Organ
Clue: Funicello’s Costar…Frankie… Mom: Avalon
Clue: Beach shoe Mom: Sandal
Claudia and Ava came next and gave mom and dad their anniversary present from Claudia’s family and Terry---Nintendo Wii Cooking Mama World Kitchen. This is a Nintendo Wii game that mimics cooking on the TV---you move the utensils in answer to a direction and it actually happens on the TV.
Just before dad and I left mom started to get anxious. Claudia and Ava stayed with mom and tried to calm her down after we left. They played calm music and Ava wrote names on the wipe off board and asked mom who each person was and who they were related to. Then mom had a bowel issue again and tried to take her catheter out. Claudia had to wrestle it out of her hand. She was very unsettled. They calmed her down and shut the lights. They put the posey’s in her hands and turned the TV on. The watched a movie. Mom was very calm at that point.
Peace and love,
Kathy and Claudia
Friday, July 22, 2011
Mom Update, July 22, 2011, Friday
Mom’s update July 22nd 2011
Dad started his day with mom and when he walked into the room she was sitting at the side of the bed with her feet hanging off the bed and trying to grab the railing with her hands. The only thing that saved her was the fact that she had the mitts on and couldn’t grab the rail or she would have landed on the floor. We are constantly second guessing ourselves about the use of the mitts and then something like this happens to remind us that she still needs them. The fact that she was trying to get out of bed is good because the “will” is there. Motivation is a very big part of recovery.
Anthony came to see mom in the afternoon and mom had OT today. She is standing at the bars but they realized that the bars are set too high. They are lowering them next week. They actually take their hands and move her right and left foot to imitate walking. She moved her right foot with assistance but the left was much harder. She told them she is afraid to move it. That is the affected side. She had a difficult time putting a shirt over her head today. OT was late in the day and she was already starting to get tired. Speech came in a worked with her. She gave mom a PBJ sandwich! Anthony was getting frustrated about the fact that speech doesn’t come every day and not over the weekend. The speech therapist said she is going slow – Anthony asked the therapist, “Do you eat on the weekend? Why doesn’t my mom?” The therapist said that someone was supposed to feed her over the weekend but they were short staffed. (mom is still on the feeding tube) He was getting upset with the fact that the speech therapist will come in two days in a row and then not again for 5 days. Where’s the consistency? She also did oral motor exercises (something Carmine has been doing for a while now). Mom was able to do everything. She also ate a banana and juice.
Dad put mom to bed tonight. He called to say they were watching the food channel together.
Peace and Love,
~Claud
Dad started his day with mom and when he walked into the room she was sitting at the side of the bed with her feet hanging off the bed and trying to grab the railing with her hands. The only thing that saved her was the fact that she had the mitts on and couldn’t grab the rail or she would have landed on the floor. We are constantly second guessing ourselves about the use of the mitts and then something like this happens to remind us that she still needs them. The fact that she was trying to get out of bed is good because the “will” is there. Motivation is a very big part of recovery.
Anthony came to see mom in the afternoon and mom had OT today. She is standing at the bars but they realized that the bars are set too high. They are lowering them next week. They actually take their hands and move her right and left foot to imitate walking. She moved her right foot with assistance but the left was much harder. She told them she is afraid to move it. That is the affected side. She had a difficult time putting a shirt over her head today. OT was late in the day and she was already starting to get tired. Speech came in a worked with her. She gave mom a PBJ sandwich! Anthony was getting frustrated about the fact that speech doesn’t come every day and not over the weekend. The speech therapist said she is going slow – Anthony asked the therapist, “Do you eat on the weekend? Why doesn’t my mom?” The therapist said that someone was supposed to feed her over the weekend but they were short staffed. (mom is still on the feeding tube) He was getting upset with the fact that the speech therapist will come in two days in a row and then not again for 5 days. Where’s the consistency? She also did oral motor exercises (something Carmine has been doing for a while now). Mom was able to do everything. She also ate a banana and juice.
Dad put mom to bed tonight. He called to say they were watching the food channel together.
Peace and Love,
~Claud
Thursday, July 21, 2011
Mom Update, July 21, 2011, Thursday
Short entry today. I worked day and night as did everyone else but dad today. Dad began and spent the day with mom. He said she was great and in a great mood. He said she ate an entire banana (not best choice given her recent bowel problems but let's hope for the best) and drank an entire cup of juice during speech. Mom also practiced enunciating certain sounds during speech too. Mom had OT (occupational therapy) and did well also. Mom pulled a shirt over her head twice in an attempt to dress herself (as dad reports). In PT (physical therapy), dad said mom stood at the parallel bars again and did her leg lifts and curls with weights too. Mom's roommate was quiet today. Mom was tired from all the therapies.
Dad left at 7 p.m. when Anthony, Con and Sammy arrived. He told them that mom had fallen asleep at 5:30 and hadn't woken since then. It would be nice to hope that mom gets a nice 12 hour sleep tonight given all the lost sleep lately... Anthony and Con and Sam sat with mom until 8:05 and said she slept soundly the entire time, so they left. I pray she sleeps through the night.
"If we hope for what we do not see, we wait for it with patience." Romans 8:25
Dad left at 7 p.m. when Anthony, Con and Sammy arrived. He told them that mom had fallen asleep at 5:30 and hadn't woken since then. It would be nice to hope that mom gets a nice 12 hour sleep tonight given all the lost sleep lately... Anthony and Con and Sam sat with mom until 8:05 and said she slept soundly the entire time, so they left. I pray she sleeps through the night.
"If we hope for what we do not see, we wait for it with patience." Romans 8:25
Wednesday, July 20, 2011
Mom Update, July 20, 2011, Wednesday
Today was an emotionally packed milestone day for us and for mom....
Today was pack the room and move day (for the 6th time!!!)!!! I began the day early this morning with mom. She was sleeping soundly.I let her sleep. Then, when she stirred a bit, I said hello and asked her to wake up. She told me to go away and smiled and went back to sleep! Dad arrived shortly thereafter followed by Anthony, Anthony Michael, and Samantha. We have the room moving down to a science now. I take pictures of the shelves, pictures on the walls...so that, when we reset up the room, I look at the pictures as a guide to know where things go. My brother said I'm crazy!!! OK I admit I am...but it does cut down on time dramatically and it does work well! Samantha sat next to mom and said, "Nonny, wake up" and mom opened her eyes and smiled sweetly at her and said good morning! The magic of a grandchild! haha! We began to pack up the room (we basically have a mini classroom in mom's room...it is filled with puzzles, games, dvd players and recorders, tools, equipment, and all sorts of learning materials...in addition to pictures that cover every part of her walls---pictures of family, friends, headshots of all of us with our names underneath, mom and dad's house and yard...and pictures...). Between us all, it took about an hour to pack the room. "Many hands make light the work." Mom asked what we were doing and why, so we reminded her about the move again and celebrated the move as progress and a graduation toward being one step closer to home. Mom was excited and happy. She was in a great mood. Once mom was dressed and in the chair, we moved her to the lounge and computer room, she told us she wanted to go for a walk. We sat in the computer room and reintroduced mom to the computer. She didn't know what to do and couldn't remember her screen name or password, but she knew what the computer was. No one knew what room mom would be moved to or where she was going....just that we had to be packed and ready to move by noon today.
Finally, around 11:00 a.m., we were told where to move mom and her things. Upstairs we went....amidst happy/sad faces and some tears. I know I've said it before but this is worth saying again: When you don't quit, when you don't give up, when you make what you're doing a challenge...eventually, everyone around you wants in" Mom left the respiratory wing and went upstairs with us. We unpacked her room lickety split. The room is small but bright and cheerful. We were supposed to have a team meeting up there but it never happened. We met one nurse who was very busy and cranky and abrupt...but whatever. We didn't meet or see any CNAs up there yet. Mom was put into the REHAB wing of the facility. She had OT today and did well. They did some cognitive therapy like color recognition and mom did well. Mom also pulled a shirt on over her head too. Mom had speech next and did some oral motor exercises (sticking out her tongue, puckering her lips...things we do on the IPAD with her), and she fed herself some pudding and drank some juice. Next, mom had PT but was tired by then...Sammy said they said she didn't do so well because she kept falling asleep on and off. She isn't sleeping well at night. I am sure it is the UTI (urinary tract infection). We get the results tomorrow. Mom had a roommate by the end of the day...an older woman who was quite upset and yelling for help. Dad got the nurse for her.
When I left mom, her old CNA was with us in the new room and sitting beside mom...loving on her. I kissed the aide good bye and began to cry so much. Then I went downstairs to check her old room and saw her old nurse and kissed and hugged and cried again. It was so emotional for us all. Sammy said it felt like the first day of school. Anthony said it felt weird too. Dad said he can't wait until we pack mom up to bring her home. He said he is going to have a huge open house party when mom comes home.
Mom is a living miracle. Truly. And over the course of the last 13 1/2 months, many people have been a part of that miracle. Some worked at the facility, some visited mom, some supported all of us family members, some faithfully prayed...but many, many people were a part of the miracle. The life journey mom has been on has been a tumultuous one with many ups and downs. At times, it was hard not to lose sight of what the miracle was...it wasn't always about bringing mom back, so much as it was about giving back to mom. And you know what, mom's progress wasn't the only miracle that occurred. Lives were changed by watching and caring for mom. Many lives in many places. It wasn't always about her progress, sometimes it was all about the love that surrounded her. Sometimes, in her state of a coma, or silent sleep thereafter, the miracle was all about people rising to the best person they could be as they encountered mom...us included. It was all always a matter of perspective...a matter of shifting our lenses in order to bless the ground that others have cursed. Because of mom and what happened to her, we all were privy to seeing a slice of heaven on earth each day, a bit of God and His Love in each other before our eyes each day.
"...in quietness and in confidence shall be your strength." Isaiah 30:15
Today was pack the room and move day (for the 6th time!!!)!!! I began the day early this morning with mom. She was sleeping soundly.I let her sleep. Then, when she stirred a bit, I said hello and asked her to wake up. She told me to go away and smiled and went back to sleep! Dad arrived shortly thereafter followed by Anthony, Anthony Michael, and Samantha. We have the room moving down to a science now. I take pictures of the shelves, pictures on the walls...so that, when we reset up the room, I look at the pictures as a guide to know where things go. My brother said I'm crazy!!! OK I admit I am...but it does cut down on time dramatically and it does work well! Samantha sat next to mom and said, "Nonny, wake up" and mom opened her eyes and smiled sweetly at her and said good morning! The magic of a grandchild! haha! We began to pack up the room (we basically have a mini classroom in mom's room...it is filled with puzzles, games, dvd players and recorders, tools, equipment, and all sorts of learning materials...in addition to pictures that cover every part of her walls---pictures of family, friends, headshots of all of us with our names underneath, mom and dad's house and yard...and pictures...). Between us all, it took about an hour to pack the room. "Many hands make light the work." Mom asked what we were doing and why, so we reminded her about the move again and celebrated the move as progress and a graduation toward being one step closer to home. Mom was excited and happy. She was in a great mood. Once mom was dressed and in the chair, we moved her to the lounge and computer room, she told us she wanted to go for a walk. We sat in the computer room and reintroduced mom to the computer. She didn't know what to do and couldn't remember her screen name or password, but she knew what the computer was. No one knew what room mom would be moved to or where she was going....just that we had to be packed and ready to move by noon today.
Finally, around 11:00 a.m., we were told where to move mom and her things. Upstairs we went....amidst happy/sad faces and some tears. I know I've said it before but this is worth saying again: When you don't quit, when you don't give up, when you make what you're doing a challenge...eventually, everyone around you wants in" Mom left the respiratory wing and went upstairs with us. We unpacked her room lickety split. The room is small but bright and cheerful. We were supposed to have a team meeting up there but it never happened. We met one nurse who was very busy and cranky and abrupt...but whatever. We didn't meet or see any CNAs up there yet. Mom was put into the REHAB wing of the facility. She had OT today and did well. They did some cognitive therapy like color recognition and mom did well. Mom also pulled a shirt on over her head too. Mom had speech next and did some oral motor exercises (sticking out her tongue, puckering her lips...things we do on the IPAD with her), and she fed herself some pudding and drank some juice. Next, mom had PT but was tired by then...Sammy said they said she didn't do so well because she kept falling asleep on and off. She isn't sleeping well at night. I am sure it is the UTI (urinary tract infection). We get the results tomorrow. Mom had a roommate by the end of the day...an older woman who was quite upset and yelling for help. Dad got the nurse for her.
When I left mom, her old CNA was with us in the new room and sitting beside mom...loving on her. I kissed the aide good bye and began to cry so much. Then I went downstairs to check her old room and saw her old nurse and kissed and hugged and cried again. It was so emotional for us all. Sammy said it felt like the first day of school. Anthony said it felt weird too. Dad said he can't wait until we pack mom up to bring her home. He said he is going to have a huge open house party when mom comes home.
Mom is a living miracle. Truly. And over the course of the last 13 1/2 months, many people have been a part of that miracle. Some worked at the facility, some visited mom, some supported all of us family members, some faithfully prayed...but many, many people were a part of the miracle. The life journey mom has been on has been a tumultuous one with many ups and downs. At times, it was hard not to lose sight of what the miracle was...it wasn't always about bringing mom back, so much as it was about giving back to mom. And you know what, mom's progress wasn't the only miracle that occurred. Lives were changed by watching and caring for mom. Many lives in many places. It wasn't always about her progress, sometimes it was all about the love that surrounded her. Sometimes, in her state of a coma, or silent sleep thereafter, the miracle was all about people rising to the best person they could be as they encountered mom...us included. It was all always a matter of perspective...a matter of shifting our lenses in order to bless the ground that others have cursed. Because of mom and what happened to her, we all were privy to seeing a slice of heaven on earth each day, a bit of God and His Love in each other before our eyes each day.
"...in quietness and in confidence shall be your strength." Isaiah 30:15
Tuesday, July 19, 2011
Mom Update, July 19, 2011, Tuesday
I began the day with mom this morning. The head of respiratory saw me and told me when mom was woken up, she was smiling and alert. Mom asked the head of respiratory when the trach would be taken out and the respiratory therapist said it was out already yesterday. Mom is being moved to another floor of the facility tomorrow…this is a major step toward going home because mom will receive more therapies now. We need to pack her room up and move it tomorrow morning. This means mom will have all new staff working with her from CNAs to nurses. We will miss all the wonderful people where she is now…there are many. Hopefully, we won’t need to break in any of the people where she will be moving to; we’ll hope for the best.
Yesterday, late in the day, Donna and Aunt Peggy came to see mom. Donna said mom was a little confused about what to do with the button activity Donna gave her to do as well as what to do with the books. Donna said mom was able to hold the pencil and was able to make lines on the one to one worksheet. Mom spoke to them but almost silently though she mostly made sense when she did speak. Mom acknowledged the jokes and was appropriate and attentive to the conversation around her. Mom recognized Donna and Aunt Peggy and knew their names too. But Donna did notice the difference in mom.
This morning, after I searched for information on moving mom and after I let the staff know about mom’s 2 upcoming doctor appointments, I began to work with mom. Her CNA had put mom’s make up on and had her dressed and in the chair. I put the table in front of mom and gave her a bead and string activity. Mom was thoroughly confused about what to do in order to complete the activity. At one point, I told her to take the string in her hand and put it in the hole. She looked all over for holes and couldn’t find one. She then said, “Push with my hand?” and grabbed my hand and pushed it rather than pushing the string through the hole. I tried singing the directions to her as well. “Put the string through the hole, through the hole” to the tune of “Put your finger in the air” and had her sing along. She kept trying and trying to complete the task. Her perseverance and commitment to task completion is amazing! However, she couldn’t figure out how to complete the task. She would call my name and say, “Kathy, I can’t find the hole” or “Kathy, I don’t know how to do this” seeking help or direction. At one point, I did the task with her hand over hand and she became annoyed and said, “You didn’t let ME do it!” When mom did complete the task, I would say, “Excellent” loudly and she would respond with, “What did I do that was excellent?” and “Shhh…don’t say it so loud.” Mom’s attention to the task lasted over 40 minutes…but with no independent success. I would explain the task over and over and she would say, “I can’t do this.” I gave mom direct instruction, taking her right hand in mine and placing a block in her left hand and asking her to look at her left hand. She couldn’t find her left hand. She kept focusing on and looking at only her right hand. It was as if her left hand didn’t exist at all. She just could not focus on her left hand at all. It was the weirdest thing I ever saw…and something I never saw with mom. It must be part of the UTI…at least I hope that is what the problem is.
Mom is still speaking lowly….very quiet, almost silently. She won’t speak out loud even though she can. I wonder how much of this is confusion?
The physical therapist came early for mom today. I snuck down that hallway after mom got there and spied a bit. I couldn’t see much, but the leg exercises I did see were the exact same ones Anthony works on with mom. Mom is now doing hamstring curls with therabands and standing up more straightly now. She is also getting more adjusted to standing straight. Mom can now do 30 leg lifts with 4 lb weights on each leg!! She is progressing more and more each day, albeit slowly!! Yahoo! The head physical therapist said mom is very, very focused in PT and follows all directions and is joking around and using sarcasm while joking too. These are all higher level thinking skills. He told her she is doing great and mom said, “If you say so!”
Dad came next to see mom. He kissed her hello and said he heard how great she is doing in Pt and she said, “Not so great.” She fell asleep after PT.
Sammy wrote: When Aunt Kathy left Anthony, Con, and Anthony and Samantha came to see Nonny. We brought our family photo albums and we are looking at them. She loves it. She loves looking at everyone but when she saw herself in a picture she rolls her eyes at it. It’s so funny. Also she saw a picture of Grammy she knew it was her mom. While we all were looking at the pictures Caroline came in and took Nonny to OT. She only stayed for 45 min. She said that Nonny worked on putting a shirt on and Nonny held the shirt and Caroline asked her what to do. Nonny said to put it over her head but she never did it. Caroline told us that Nonny says what she should do but she does not actually do it. Jennifer came in and weighed nonny and changed her. After that she left and nonny is writing a list for Poppy to get things.
Kathy wrote: Dad and mom sat and talked and mom wrote or tried to write with a pen. When I came in between classes, they were playing TIC TAC TOE together. Mom had written some scribble that actually looked alot like her own handwriting in script in places!!
Claudia wrote: John and Ava came in the evening and Pop was still there. Pop had a
paper and pen and mom was scribbling on it – she said it was a shopping
list. She pulled the pulse-ox off her finger. John took out the wipe
off board and wrote “I love you” on it. Mom wrote a great “I” and an O
and a V and the E was missing a piece and wrote an O and a U with
prompting. John wrote his name and Ava’s name and she read it. He also
wrote in script and she read that also. John did some PT on her hands.
He then gave her a lacing card but mom did not show interest. She was
able to pull the string if John put it through the hole. A few times she
put it in the hole. Ava took theraputty out and she said make a ball,
then make it flat. Then on the flat piece Ava took pieces to make a face
and mom would take the pieces off of Ava’s and put it on hers. Ava took
out the magnet balls (bucky balls) and mom loved it! John made circles
and gave them to her to put together and then John and Ava asked her to
take them apart and she had great hand manipulation to pull the pieces
apart. Ava was talking about Brooklyn and mom looked at John and said,
“Are you an idiot letting her go to Brooklyn?”They watched a little TV
and then mom pulled the pulse-ox off her finger. John told her not to
and she said, “I didn’t, I didn’t.” While they were waiting for the
nurse she had the feeding tube in her hand and John told her if she
wants to go home she can’t pull things off. They put her in the bed and
they stepped out into the lounge. John asked the nurse to put the gloves
on for them. As soon as they came in the room mom said, “Get these
things off me, How am I gonna drive with these on?” John shut the blinds
and the lights and turned on the Met game. They kissed her good night
and left.
"To every thing there is a season, and a time to every purpose under the heaven" Ecclesiastes 3:1
Yesterday, late in the day, Donna and Aunt Peggy came to see mom. Donna said mom was a little confused about what to do with the button activity Donna gave her to do as well as what to do with the books. Donna said mom was able to hold the pencil and was able to make lines on the one to one worksheet. Mom spoke to them but almost silently though she mostly made sense when she did speak. Mom acknowledged the jokes and was appropriate and attentive to the conversation around her. Mom recognized Donna and Aunt Peggy and knew their names too. But Donna did notice the difference in mom.
This morning, after I searched for information on moving mom and after I let the staff know about mom’s 2 upcoming doctor appointments, I began to work with mom. Her CNA had put mom’s make up on and had her dressed and in the chair. I put the table in front of mom and gave her a bead and string activity. Mom was thoroughly confused about what to do in order to complete the activity. At one point, I told her to take the string in her hand and put it in the hole. She looked all over for holes and couldn’t find one. She then said, “Push with my hand?” and grabbed my hand and pushed it rather than pushing the string through the hole. I tried singing the directions to her as well. “Put the string through the hole, through the hole” to the tune of “Put your finger in the air” and had her sing along. She kept trying and trying to complete the task. Her perseverance and commitment to task completion is amazing! However, she couldn’t figure out how to complete the task. She would call my name and say, “Kathy, I can’t find the hole” or “Kathy, I don’t know how to do this” seeking help or direction. At one point, I did the task with her hand over hand and she became annoyed and said, “You didn’t let ME do it!” When mom did complete the task, I would say, “Excellent” loudly and she would respond with, “What did I do that was excellent?” and “Shhh…don’t say it so loud.” Mom’s attention to the task lasted over 40 minutes…but with no independent success. I would explain the task over and over and she would say, “I can’t do this.” I gave mom direct instruction, taking her right hand in mine and placing a block in her left hand and asking her to look at her left hand. She couldn’t find her left hand. She kept focusing on and looking at only her right hand. It was as if her left hand didn’t exist at all. She just could not focus on her left hand at all. It was the weirdest thing I ever saw…and something I never saw with mom. It must be part of the UTI…at least I hope that is what the problem is.
Mom is still speaking lowly….very quiet, almost silently. She won’t speak out loud even though she can. I wonder how much of this is confusion?
The physical therapist came early for mom today. I snuck down that hallway after mom got there and spied a bit. I couldn’t see much, but the leg exercises I did see were the exact same ones Anthony works on with mom. Mom is now doing hamstring curls with therabands and standing up more straightly now. She is also getting more adjusted to standing straight. Mom can now do 30 leg lifts with 4 lb weights on each leg!! She is progressing more and more each day, albeit slowly!! Yahoo! The head physical therapist said mom is very, very focused in PT and follows all directions and is joking around and using sarcasm while joking too. These are all higher level thinking skills. He told her she is doing great and mom said, “If you say so!”
Dad came next to see mom. He kissed her hello and said he heard how great she is doing in Pt and she said, “Not so great.” She fell asleep after PT.
Sammy wrote: When Aunt Kathy left Anthony, Con, and Anthony and Samantha came to see Nonny. We brought our family photo albums and we are looking at them. She loves it. She loves looking at everyone but when she saw herself in a picture she rolls her eyes at it. It’s so funny. Also she saw a picture of Grammy she knew it was her mom. While we all were looking at the pictures Caroline came in and took Nonny to OT. She only stayed for 45 min. She said that Nonny worked on putting a shirt on and Nonny held the shirt and Caroline asked her what to do. Nonny said to put it over her head but she never did it. Caroline told us that Nonny says what she should do but she does not actually do it. Jennifer came in and weighed nonny and changed her. After that she left and nonny is writing a list for Poppy to get things.
Kathy wrote: Dad and mom sat and talked and mom wrote or tried to write with a pen. When I came in between classes, they were playing TIC TAC TOE together. Mom had written some scribble that actually looked alot like her own handwriting in script in places!!
Claudia wrote: John and Ava came in the evening and Pop was still there. Pop had a
paper and pen and mom was scribbling on it – she said it was a shopping
list. She pulled the pulse-ox off her finger. John took out the wipe
off board and wrote “I love you” on it. Mom wrote a great “I” and an O
and a V and the E was missing a piece and wrote an O and a U with
prompting. John wrote his name and Ava’s name and she read it. He also
wrote in script and she read that also. John did some PT on her hands.
He then gave her a lacing card but mom did not show interest. She was
able to pull the string if John put it through the hole. A few times she
put it in the hole. Ava took theraputty out and she said make a ball,
then make it flat. Then on the flat piece Ava took pieces to make a face
and mom would take the pieces off of Ava’s and put it on hers. Ava took
out the magnet balls (bucky balls) and mom loved it! John made circles
and gave them to her to put together and then John and Ava asked her to
take them apart and she had great hand manipulation to pull the pieces
apart. Ava was talking about Brooklyn and mom looked at John and said,
“Are you an idiot letting her go to Brooklyn?”They watched a little TV
and then mom pulled the pulse-ox off her finger. John told her not to
and she said, “I didn’t, I didn’t.” While they were waiting for the
nurse she had the feeding tube in her hand and John told her if she
wants to go home she can’t pull things off. They put her in the bed and
they stepped out into the lounge. John asked the nurse to put the gloves
on for them. As soon as they came in the room mom said, “Get these
things off me, How am I gonna drive with these on?” John shut the blinds
and the lights and turned on the Met game. They kissed her good night
and left.
"To every thing there is a season, and a time to every purpose under the heaven" Ecclesiastes 3:1
Monday, July 18, 2011
Mom Update, July 18, 2011, Monday
Today is the day mom gets decanulated (the trach comes out)!!!! I can’t wait!!! In honor of her big day, Claudia, Ava, Jean, and Lenny all wore their “Don’t quit 5 minutes before the miracle happens” royal blue T-shirts to work!!
I began the morning with mom today. I arrived bright and early but she was out like a light, snoring loudly and asleep. I let her rest. At this point in her recovery, she needs to sleep and rest as needed (though not in a way that confuses daytime and nighttime); it’s a balancing act at times. I was, however, surprised that her TV was on, and quite loud. There was also a chair next to her bed near the wall---it looked like someone may have been sitting vigil with her during the night. I wonder what kind of night mom had. I am hoping she slept and rested adequately. We need to find out the results of the urinalysis today too---hopefully the results are in today. And—hopefully, a UTI (urinary tract infection) is the cause of mom’s disorientation over the last 3 days. It would be an easy fix. One of our favorite respiratory therapists just passed by mom’s room. The therapist commented that today is Mom’s BIG DAY and wished to be here when it happened! Everyone wants to be part of the big moment. Everyone knows today is mom’s big day…all the nurses, aides, respiratory therapists that mom has had over the last 13 ½ months are buzzing by her door and yelling in a good word about this milestone in mom’s recovery.
The respiratory therapist came in and said mom should have her shower first and then be decanulated. Mom is in the shower now. I can’t believe it’s been 13 ½ months already. When mom woke today (actually her CNA woke her for her shower), mom was confused a bit. She called to me right away but she insisted she had a shower already and then said that she didn’t need another one. Mom still has the catheter in since Saturday evening when they took a urine sample. I think it comes out today but I’m not sure. Mom hardly coughs anymore, which is great! Thank God. Lately, mom has been complaining that the toes on her right foot hurt to the touch. You could just be gently massaging them or rubbing them and she screeches in pain.
WELL---AT 9:00 a.m. THIS MORNING---THE TRACH CAME OUT!!!! PTL!!!!!! It was the fastest procedure ever! I could have done it---there was only a 6 inch tube in mom’s throat—that was it. No balloon at the end. It took about 3 seconds or less to remove. Mom has 2 large bandages over the area now until the stoma (hole in her neck) closes. It can take anywhere from 1-8 days to close (or more). It all depends on the person.
The Occupational Therapist came in to work with mom today. The therapist evaluated her today. Mom was asked if it is sunny outside or not, to raise her left and right arms…mom did better with the right side of course. Mom was able to answer all the questions the therapist asked. The therapist said mom has quickly progressed from following 1 step directions to following 2-3 step directions. Mom asked what she would do in therapy and what she had to do to go home. The Occupational Therapist said that mom will get ½ hour of occupational therapy a day starting tomorrow. At Occupational Therapy, mom will work on self-help skills like dressing…and also on cognitive abilities like answering questions and following commands. The therapist wants mom to wear the split on her left hand whenever we aren’t working on it to prevent curling.
Mom and I worked on the nuts and bolts once she woke up. She needed me to show her how to screw them together through a model---I did the task with a nut and bolt at the same time that mom did it. It took mom a great deal of thought and planning, but she did screw the nut on the bolt---several times with several different nuts and bolts. The nuts and bolts are different colors and the end of the bolt matches the same shape as the nut. For now, I gave mom the matching pairs—later on we will have her make the match and screw them together.
Carmine came today. He had mom slightly stick out her tongue and then swallow while she did this. This exercises the bones in the throat--- 10 exercises like this 3 times a day. Chin tuck exercise is the other exercise—take your chin and tuck it into your neck—head down and then eat, this helps the food to go down the correct tunnel in the throat—not down airway. We will work on trying to keep the throat up on the swallow. Carmine used the vibrator on mom’s cheeks, tongue, and lips today. This will help mom in chewing because it will strengthen these areas. Carmine teased mom and said that he made sure he had a breath mint today and mom made believe she passed out! They joke and tease each other. Carmine worked on mom’s lips and mouth, and tongue manually (with his hands) next. After this, Carmine used a little sponge on a lollipop stick to rub the sides of mom’s tongue.
Dad came to see mom next followed by Anthony, Sammy, and Gina and Mom’s friends, Maureen and Florence. They all talked and laughed a bit and enjoyed visiting. Anthony said that the person at the facility who plays the organ from room to room came to see mom. Mom appeared to enjoy the music and sang along but her roommate had the TV on really loud and it pretty much drowned out the organ. Anthony brought some photo albums from home to look at with mom and she enjoyed looking at the pictures with them. Anthony said that mom appeared to be very frustrated because she can’t make too much noise when she talks again due to the stoma still being open in her neck for now (though the nurse did show her how to cover it with her hand and talk—AND mom was able to make sound without covering it). I wonder how much of her low talking and silence is intentional (doesn’t like how she sounds) and how much is cognitively (forgets how to project) or physically (hole in throat) impaired or delayed on a temporary basis. Time will tell. Mom went to physical therapy and they did indeed increase the weight on her ankles to 4 lbs and mom was able to do leg lifts. She attempted to stand at the walker but couldn’t. We need to practice this skill with mom ourselves I think.
Tonight, Claudia stayed with mom until she fell asleep. Dad said that mom disconnected her feeding tube and the liquid got all over her. She still gets anxious at night and begins to do silly things she is not aware of doing. As of now, I haven’t heard from Claudia which leads me to believe that she is still with mom. Mom’s roommate has a mental impairment and doesn’t have any respect for quiet or lights or anything day or night. The TV blasts and the lights are off during the day and on full blast at night. Mom leaves that room in a day or two so I guess we will just ride it out with her for now. We have asked both the roommate and her husband and the nurses to turn things down…sometimes there is compliance and sometimes there isn’t. Just heard from Claudia now and she said that after a bit of anxiety, mom calmed down and was peaceful. She didn’t remember all that went on today but she did remember some things. Mom said, “I’m such a bother. I am making trouble for people now.” Claudia had on her “Don’t quit…” T-shirt and told mom how happy we all are---Claudia started to cry and mom asked why. Mom asked what she did---and Claudia said, “You are a miracle. You opened your heart to receive our love and we loved you back. You are a miracle.” It ended up being a nice visit. Claudia could actually hear mom’s voice. They talked and laughed and snuggled. Claudia asked mom if she wanted her piggies and mom said, “Wait, wait, wait…I have to decide which one.”
Mom goes to the hospital next week for a cerebral angiogram of the coil that was put in last year to make sure all is still well at the site. It is a one day procedure. A long day, but one day. Please continue to pray that mom finds the peace she needs to settle down at night and rest. She needs it---also she is still experiencing bowel difficulties as well. Both the doctor and the disease control person came to check mom and said they found nothing wrong. Still waiting for the results of the urinalysis.
“This is the resting place, let the weary rest" Isaiah 28:12
I began the morning with mom today. I arrived bright and early but she was out like a light, snoring loudly and asleep. I let her rest. At this point in her recovery, she needs to sleep and rest as needed (though not in a way that confuses daytime and nighttime); it’s a balancing act at times. I was, however, surprised that her TV was on, and quite loud. There was also a chair next to her bed near the wall---it looked like someone may have been sitting vigil with her during the night. I wonder what kind of night mom had. I am hoping she slept and rested adequately. We need to find out the results of the urinalysis today too---hopefully the results are in today. And—hopefully, a UTI (urinary tract infection) is the cause of mom’s disorientation over the last 3 days. It would be an easy fix. One of our favorite respiratory therapists just passed by mom’s room. The therapist commented that today is Mom’s BIG DAY and wished to be here when it happened! Everyone wants to be part of the big moment. Everyone knows today is mom’s big day…all the nurses, aides, respiratory therapists that mom has had over the last 13 ½ months are buzzing by her door and yelling in a good word about this milestone in mom’s recovery.
The respiratory therapist came in and said mom should have her shower first and then be decanulated. Mom is in the shower now. I can’t believe it’s been 13 ½ months already. When mom woke today (actually her CNA woke her for her shower), mom was confused a bit. She called to me right away but she insisted she had a shower already and then said that she didn’t need another one. Mom still has the catheter in since Saturday evening when they took a urine sample. I think it comes out today but I’m not sure. Mom hardly coughs anymore, which is great! Thank God. Lately, mom has been complaining that the toes on her right foot hurt to the touch. You could just be gently massaging them or rubbing them and she screeches in pain.
WELL---AT 9:00 a.m. THIS MORNING---THE TRACH CAME OUT!!!! PTL!!!!!! It was the fastest procedure ever! I could have done it---there was only a 6 inch tube in mom’s throat—that was it. No balloon at the end. It took about 3 seconds or less to remove. Mom has 2 large bandages over the area now until the stoma (hole in her neck) closes. It can take anywhere from 1-8 days to close (or more). It all depends on the person.
The Occupational Therapist came in to work with mom today. The therapist evaluated her today. Mom was asked if it is sunny outside or not, to raise her left and right arms…mom did better with the right side of course. Mom was able to answer all the questions the therapist asked. The therapist said mom has quickly progressed from following 1 step directions to following 2-3 step directions. Mom asked what she would do in therapy and what she had to do to go home. The Occupational Therapist said that mom will get ½ hour of occupational therapy a day starting tomorrow. At Occupational Therapy, mom will work on self-help skills like dressing…and also on cognitive abilities like answering questions and following commands. The therapist wants mom to wear the split on her left hand whenever we aren’t working on it to prevent curling.
Mom and I worked on the nuts and bolts once she woke up. She needed me to show her how to screw them together through a model---I did the task with a nut and bolt at the same time that mom did it. It took mom a great deal of thought and planning, but she did screw the nut on the bolt---several times with several different nuts and bolts. The nuts and bolts are different colors and the end of the bolt matches the same shape as the nut. For now, I gave mom the matching pairs—later on we will have her make the match and screw them together.
Carmine came today. He had mom slightly stick out her tongue and then swallow while she did this. This exercises the bones in the throat--- 10 exercises like this 3 times a day. Chin tuck exercise is the other exercise—take your chin and tuck it into your neck—head down and then eat, this helps the food to go down the correct tunnel in the throat—not down airway. We will work on trying to keep the throat up on the swallow. Carmine used the vibrator on mom’s cheeks, tongue, and lips today. This will help mom in chewing because it will strengthen these areas. Carmine teased mom and said that he made sure he had a breath mint today and mom made believe she passed out! They joke and tease each other. Carmine worked on mom’s lips and mouth, and tongue manually (with his hands) next. After this, Carmine used a little sponge on a lollipop stick to rub the sides of mom’s tongue.
Dad came to see mom next followed by Anthony, Sammy, and Gina and Mom’s friends, Maureen and Florence. They all talked and laughed a bit and enjoyed visiting. Anthony said that the person at the facility who plays the organ from room to room came to see mom. Mom appeared to enjoy the music and sang along but her roommate had the TV on really loud and it pretty much drowned out the organ. Anthony brought some photo albums from home to look at with mom and she enjoyed looking at the pictures with them. Anthony said that mom appeared to be very frustrated because she can’t make too much noise when she talks again due to the stoma still being open in her neck for now (though the nurse did show her how to cover it with her hand and talk—AND mom was able to make sound without covering it). I wonder how much of her low talking and silence is intentional (doesn’t like how she sounds) and how much is cognitively (forgets how to project) or physically (hole in throat) impaired or delayed on a temporary basis. Time will tell. Mom went to physical therapy and they did indeed increase the weight on her ankles to 4 lbs and mom was able to do leg lifts. She attempted to stand at the walker but couldn’t. We need to practice this skill with mom ourselves I think.
Tonight, Claudia stayed with mom until she fell asleep. Dad said that mom disconnected her feeding tube and the liquid got all over her. She still gets anxious at night and begins to do silly things she is not aware of doing. As of now, I haven’t heard from Claudia which leads me to believe that she is still with mom. Mom’s roommate has a mental impairment and doesn’t have any respect for quiet or lights or anything day or night. The TV blasts and the lights are off during the day and on full blast at night. Mom leaves that room in a day or two so I guess we will just ride it out with her for now. We have asked both the roommate and her husband and the nurses to turn things down…sometimes there is compliance and sometimes there isn’t. Just heard from Claudia now and she said that after a bit of anxiety, mom calmed down and was peaceful. She didn’t remember all that went on today but she did remember some things. Mom said, “I’m such a bother. I am making trouble for people now.” Claudia had on her “Don’t quit…” T-shirt and told mom how happy we all are---Claudia started to cry and mom asked why. Mom asked what she did---and Claudia said, “You are a miracle. You opened your heart to receive our love and we loved you back. You are a miracle.” It ended up being a nice visit. Claudia could actually hear mom’s voice. They talked and laughed and snuggled. Claudia asked mom if she wanted her piggies and mom said, “Wait, wait, wait…I have to decide which one.”
Mom goes to the hospital next week for a cerebral angiogram of the coil that was put in last year to make sure all is still well at the site. It is a one day procedure. A long day, but one day. Please continue to pray that mom finds the peace she needs to settle down at night and rest. She needs it---also she is still experiencing bowel difficulties as well. Both the doctor and the disease control person came to check mom and said they found nothing wrong. Still waiting for the results of the urinalysis.
“This is the resting place, let the weary rest" Isaiah 28:12
Mom Update, July 17, 2011, Sunday
Mom’s update July 17, 2011
I started the day with mom and when I arrived she was sleeping…out cold and snoring. No wonder, she was up until after 11pm! I sat down next to her and opened my computer and started to work. All of a sudden I heard someone say, “Claudia, Claudia.” It was mom! I turned to her and said, “Good morning, morning glory!” She said to me, “It’s 10 O’clock?” I said yes and thought that was weird because she didn’t have her glasses on. I fixed her in the bed and put her glasses on and her hearing aids. Her CNA came in and got her ready for the day. We played Wii Cooking Mama. It is a video game that simulates cooking – chopping, slicing, stirring, etc. I moved her wheel chair right up against the TV and we played a few rounds. Con, Anthony and Anthony Michael came as we were playing. I put the Wii game away and we talked for a while. Then we took mom outside. Anthony brought the Sunday paper and we had her lap desk outside so she could look through the paper (one of mom’s favorite things to do). Anthony asked her what part of the paper she wanted and she said Fan Fair. They did the crossword puzzle with her. She was able to get a few answers. Mom loves to sit out front and watch people walk by. Dad came while they were outside and they all talked and socialized. There is a man and woman from her church who have a daughter in the facility and dad saw them in the hallway when he went into the building and they asked how mom was. Dad said that she was outside and they were shocked! They went out to say hi and mom said hi and recognized them.
Terry came next and visited with mom. She said that she was talkative. They watched TV together. Terry left dad there to go home and Con and Anthony came back to help get mom to sleep tonight. Mom is still having bowel issues. Mom has been having a tough time settling down at night. It is almost as if she is having an anxiety attack. It is difficult to witness. Con called to tell me she was there and that mom was very fidgety. She kept talking about cutting things. Get me a scissor, she kept saying. She kept telling them to go to sleep. Anth said, “We will go to sleep when you go to sleep.” They shut all the lights and put the TV on low and sat with her but she was very fidgety. She closed her eyes for only a minute. Then a CNA came in to change her. When they came back in mom was up. She was holding their hands. Con came up with the idea of putting the hand posey’s in her hand (hand pillows) and Anthony made believe he was sleeping and then she closed her eyes. Anthony put the mitts on and she asked why they had to be on put didn’t put up a fight. Mom told him to go to sleep. Anth made believe he was sleeping and then she went out for the night. Con watched her look at Anthony sleeping and then mom turned her head and fell asleep. They left and went home.
Peace, Be Still (Matthew 8:23-27)
~Claud
I started the day with mom and when I arrived she was sleeping…out cold and snoring. No wonder, she was up until after 11pm! I sat down next to her and opened my computer and started to work. All of a sudden I heard someone say, “Claudia, Claudia.” It was mom! I turned to her and said, “Good morning, morning glory!” She said to me, “It’s 10 O’clock?” I said yes and thought that was weird because she didn’t have her glasses on. I fixed her in the bed and put her glasses on and her hearing aids. Her CNA came in and got her ready for the day. We played Wii Cooking Mama. It is a video game that simulates cooking – chopping, slicing, stirring, etc. I moved her wheel chair right up against the TV and we played a few rounds. Con, Anthony and Anthony Michael came as we were playing. I put the Wii game away and we talked for a while. Then we took mom outside. Anthony brought the Sunday paper and we had her lap desk outside so she could look through the paper (one of mom’s favorite things to do). Anthony asked her what part of the paper she wanted and she said Fan Fair. They did the crossword puzzle with her. She was able to get a few answers. Mom loves to sit out front and watch people walk by. Dad came while they were outside and they all talked and socialized. There is a man and woman from her church who have a daughter in the facility and dad saw them in the hallway when he went into the building and they asked how mom was. Dad said that she was outside and they were shocked! They went out to say hi and mom said hi and recognized them.
Terry came next and visited with mom. She said that she was talkative. They watched TV together. Terry left dad there to go home and Con and Anthony came back to help get mom to sleep tonight. Mom is still having bowel issues. Mom has been having a tough time settling down at night. It is almost as if she is having an anxiety attack. It is difficult to witness. Con called to tell me she was there and that mom was very fidgety. She kept talking about cutting things. Get me a scissor, she kept saying. She kept telling them to go to sleep. Anth said, “We will go to sleep when you go to sleep.” They shut all the lights and put the TV on low and sat with her but she was very fidgety. She closed her eyes for only a minute. Then a CNA came in to change her. When they came back in mom was up. She was holding their hands. Con came up with the idea of putting the hand posey’s in her hand (hand pillows) and Anthony made believe he was sleeping and then she closed her eyes. Anthony put the mitts on and she asked why they had to be on put didn’t put up a fight. Mom told him to go to sleep. Anth made believe he was sleeping and then she went out for the night. Con watched her look at Anthony sleeping and then mom turned her head and fell asleep. They left and went home.
Peace, Be Still (Matthew 8:23-27)
~Claud
Sunday, July 17, 2011
Mom Update, July 16, 2011, Saturday
Mom’s Update July 16, 2011
I started the day with mom after being with her until 11:30 last night. Ava and Anthony Michael were going to stay with mom but Ava was called to work at 7am and had to leave at 7am so I thought she needed her sleep. We all have been with mom late this past week. She is very anxious and unsettled. Nighttime is difficult. She can’t fall asleep and she gets very upset and anxious when we have to put the mitts on. She also has been experiencing some gastrointestinal and bowel issues right before bed which also makes it hard to relax and drift off to sleep. I came in and she was already in the wheel chair, showered and dressed for the day. I spoke to the nurse and she said she was very anxious and confused this morning so she got her ready early. She thought that once she was in the chair and her routine began she might be more lucid. I came in and said, “Good Morning morning glory!” She said good morning back. I moved her into the lounge so we would have more room to work. I brought my summer school work with me so I could plan for next week. I set mom up with the pegs and the rings. She didn’t know what to do and kept asking me what I wanted her to do. I tried some restraint therapy, which is holding her good hand and having her do the task with her affected arm. She kept trying to move the good arm and hand. I had to explain to her to put her mind on her left arm and hand. I also stroked her affected hand to let her know where her mind had to be. She eventually put 3 rings on the pegs with her affected arm and hand. It took a lot of thought and concentration. I then gave her five yellow paper clips and a yellow card. I wrote on the ipad (black board app) “Put the paperclips on the card.” Mom kept trying to put the clips on the ipad. She read the phrase over and over and over but couldn’t figure out what to do. Something wasn’t right. This wasn’t that difficult. I couldn’t figure out what was wrong. It took a long time for her to process the information and perform the task. Anthony and Con came and I showed them how to do restraint therapy. Anthony held her right hand and gave her the buttons and the container. Mom was able to put the buttons in the container with her affected hand. I then gave Anthony a book I bought that has photo realistic pictures of patterns (squirrel, nut, squirrel…) The object is to see what comes next. There were simplistic ABAB patterns and more complex. Mom was able to do all of the patterns. The brain is so weird! Con and Anthony took mom outside and I had to leave. I spoke to Kathy and she wondered if mom had a UTI? Kathy called the nurses station later in the day and asked if this were a possibility and could they send out a specimen.
Getting back to Anthony and Con’s visit…they stayed in the lounge with mom working on putting the buttons in the cup. They then went out in the courtyard under the umbrellas. They tried to get her to play cards but she didn’t want to. Mom said, “It’s lonely out here.” Con said, “Do you want to go out front by the people?” she said yes so they went out front to watch the people come in and out. They talked and laughed. She fell asleep for a while and then Dad came to see her. She stayed asleep until they left. While they were outside Anthony Michael called and mom had a conversation with him and she was very loud. Anthony said other than that conversation she was very quiet when she spoke to them.
When I came back, (to put mom to bed) Terry was with mom. They were sitting together watching TV and talking. Terry told me that they put a catheter in mom and that I should go to the nurses station to ask about it. I was told that they put a catheter in and mom had a lot of urine in the bladder (400cc’s? I can’t remember the exact number but it was a lot) She has not wanted to go to the bathroom because the more aware she is and the more she is recovering she is embarrassed to go. She wants to get up and walk into the bathroom (she can’t walk yet). There is a strong possibility that she has a UTI. I just hope that this doesn’t delay her getting decanulated. I sat with mom and continued doing my panning and work for summer school. Mom was very restless and constantly asked if she could “cut” things. She would lift up her blanket and say give me a cutter, I want to cut this. She said the same thing about the pulse-ox on her finger. She would ask every 2-3 minutes. I kept telling what each item was and why we couldn’t cut it. It was maddening! At one point I just laughed and couldn’t stop because I was exhausted and at my wits end. I shut the lights and played soft music (sleep CD) and just sat with her. She experienced bowel issues again and the nurse came in to try to help her. She ke[t trying to get out of the bed to go to the bathroom. Nighttime is so hard. The reason we stay so late with her is that we are so close to her getting decanulated and we were so close before (December) and then she was decanulated by accident and her lung collapsed and she was in the hospital. I remember being in the emergency room and seeing mom and thinking, I don't know if I can do this again! We all just want her to make it to the point where we won’t have to put mitts on her and she can make improvements to eventually go home. Going home is actually a reality now!Although, there is so much to be done with her skill level before she can go home. She will need extensive therapy so she can get off the feeding tube and walk to the bathroom to name a few. We need to keep her safe until then. It is so late and I am so tired, i don't even know if I am making any sense. Goodnight!
Please pray that the possible infection won't hold up her decanulation procedure on Monday. Oh yea, and also pray for peace and calm at night.
Love to all,
~Claud
I started the day with mom after being with her until 11:30 last night. Ava and Anthony Michael were going to stay with mom but Ava was called to work at 7am and had to leave at 7am so I thought she needed her sleep. We all have been with mom late this past week. She is very anxious and unsettled. Nighttime is difficult. She can’t fall asleep and she gets very upset and anxious when we have to put the mitts on. She also has been experiencing some gastrointestinal and bowel issues right before bed which also makes it hard to relax and drift off to sleep. I came in and she was already in the wheel chair, showered and dressed for the day. I spoke to the nurse and she said she was very anxious and confused this morning so she got her ready early. She thought that once she was in the chair and her routine began she might be more lucid. I came in and said, “Good Morning morning glory!” She said good morning back. I moved her into the lounge so we would have more room to work. I brought my summer school work with me so I could plan for next week. I set mom up with the pegs and the rings. She didn’t know what to do and kept asking me what I wanted her to do. I tried some restraint therapy, which is holding her good hand and having her do the task with her affected arm. She kept trying to move the good arm and hand. I had to explain to her to put her mind on her left arm and hand. I also stroked her affected hand to let her know where her mind had to be. She eventually put 3 rings on the pegs with her affected arm and hand. It took a lot of thought and concentration. I then gave her five yellow paper clips and a yellow card. I wrote on the ipad (black board app) “Put the paperclips on the card.” Mom kept trying to put the clips on the ipad. She read the phrase over and over and over but couldn’t figure out what to do. Something wasn’t right. This wasn’t that difficult. I couldn’t figure out what was wrong. It took a long time for her to process the information and perform the task. Anthony and Con came and I showed them how to do restraint therapy. Anthony held her right hand and gave her the buttons and the container. Mom was able to put the buttons in the container with her affected hand. I then gave Anthony a book I bought that has photo realistic pictures of patterns (squirrel, nut, squirrel…) The object is to see what comes next. There were simplistic ABAB patterns and more complex. Mom was able to do all of the patterns. The brain is so weird! Con and Anthony took mom outside and I had to leave. I spoke to Kathy and she wondered if mom had a UTI? Kathy called the nurses station later in the day and asked if this were a possibility and could they send out a specimen.
Getting back to Anthony and Con’s visit…they stayed in the lounge with mom working on putting the buttons in the cup. They then went out in the courtyard under the umbrellas. They tried to get her to play cards but she didn’t want to. Mom said, “It’s lonely out here.” Con said, “Do you want to go out front by the people?” she said yes so they went out front to watch the people come in and out. They talked and laughed. She fell asleep for a while and then Dad came to see her. She stayed asleep until they left. While they were outside Anthony Michael called and mom had a conversation with him and she was very loud. Anthony said other than that conversation she was very quiet when she spoke to them.
When I came back, (to put mom to bed) Terry was with mom. They were sitting together watching TV and talking. Terry told me that they put a catheter in mom and that I should go to the nurses station to ask about it. I was told that they put a catheter in and mom had a lot of urine in the bladder (400cc’s? I can’t remember the exact number but it was a lot) She has not wanted to go to the bathroom because the more aware she is and the more she is recovering she is embarrassed to go. She wants to get up and walk into the bathroom (she can’t walk yet). There is a strong possibility that she has a UTI. I just hope that this doesn’t delay her getting decanulated. I sat with mom and continued doing my panning and work for summer school. Mom was very restless and constantly asked if she could “cut” things. She would lift up her blanket and say give me a cutter, I want to cut this. She said the same thing about the pulse-ox on her finger. She would ask every 2-3 minutes. I kept telling what each item was and why we couldn’t cut it. It was maddening! At one point I just laughed and couldn’t stop because I was exhausted and at my wits end. I shut the lights and played soft music (sleep CD) and just sat with her. She experienced bowel issues again and the nurse came in to try to help her. She ke[t trying to get out of the bed to go to the bathroom. Nighttime is so hard. The reason we stay so late with her is that we are so close to her getting decanulated and we were so close before (December) and then she was decanulated by accident and her lung collapsed and she was in the hospital. I remember being in the emergency room and seeing mom and thinking, I don't know if I can do this again! We all just want her to make it to the point where we won’t have to put mitts on her and she can make improvements to eventually go home. Going home is actually a reality now!Although, there is so much to be done with her skill level before she can go home. She will need extensive therapy so she can get off the feeding tube and walk to the bathroom to name a few. We need to keep her safe until then. It is so late and I am so tired, i don't even know if I am making any sense. Goodnight!
Please pray that the possible infection won't hold up her decanulation procedure on Monday. Oh yea, and also pray for peace and calm at night.
Love to all,
~Claud
Friday, July 15, 2011
Mom Update, July 15, 2011, Friday
I began the day with mom today....very, very, very early in the morning hhahahaha!!! like 12:00 a.m.!!! She appears to have sundown syndrome. This is a condition of anxiety and panic and sometimes even depression that occurs as soon as the sun goes down. It was also a full moon last night which can tend to cause emotional mayhem in people with head injuries or mental illnesses or instabilities. After Anthony and Con and the kids left last night---I sent them home with my laptop to give to Claudia so the blog could get posted because there is no wireless internet access at the facility---I sat with mom. She was STUBBORN which is sort of like mom but it was to the umpth degree last night. It was funny to me though once I was there (around 9:30 p.m. after I finished work). She is too comical--she kept telling ME to go to sleep!! AND she kept telling me NOT to mess her hair and to leave her make-up on and alone!! hahaha!!
Two days ago, Mom talked on the phone, out loud to JoAnn, Angelo, and Claudia!!! She also tried to begin several conversations with Anthony Michael by initiating the conversation herself!!! She asked him questions like, "So, what are you going to do when you leave here today?" Also, when someone asked how long she is married, mom said, "Well, let me see. What year is it now? Hmmm...2011 and I got married in 1959 (it was really 1957)..." and she began to try to do the math to figure out the answer!!!
Dad is doing well thank God though I don't think he truly realizes what it will be like to take mom home in the condition she is currently in. Who knows if we will have to do that or not...a lot is based on rehabilitation. She is currently in a skilled nursing facility so while she can stay there as long as she needs to, the rehabilitation is limited. If she moves to an in-patient rehabilitation center, the rehab will be great but it won't last forever which means that whenever they feel she is plateaued---she will need to go home. This is fine but will or may be difficult if mom can't walk or is in a diaper still or has a feeding tube. Dad won't be as free as he is now---even though he may not think he is free at all. Mom won't be able to be left alone in the current condition she is in. There is a lot to think about.
When I got to mom this morning, she was very agitated and confused…she gets like this when she is overtired and doesn’t sleep. I asked her if she slept well last night and she said no. I believed her based on how she was acting and what she was saying. She kept talking about needing to cut things and about having gone to the dentist and the store and how she’s been waiting for us to take her home. She gets this way when she hasn’t slept or is sleepy; but I will monitor her for a urinary tract infection too. She was nasty and argumentative during this time with me.
By the time Anthony and dad came, mom seemed to perk up more and as the visit progressed, mom became more present and lucid. Anthony did mom’s physical therapy on her legs. It is all thanks to Anthony that mom can stand today---it is only through his perseverance that mom can stand. Then, Anthony and I worked on mom’s arms. We each held one of mom’s hands and asked her to pull herself up. Mom couldn’t do it at first, but then she was able to. We did this type of modified sit ups to about 10. Mom was able to count along and she was even able to remember the count in between stops.
The pulmonologist and the head of respiratory came to see mom in the middle of her getting ready for the day. Mom greeted the pulmonologist with a huge smile and said hello. Then the pulmonlogist said that mom was nothing short of a miracle and the most perfect example of the power of prayer that he ever witnessed. He confirmed that mom’s trach will be removed (decanulated) on Monday morning!! He asked mom to make a fist and she did then he teased her and asked her to box with him and she did—she had just finished doing that with Anthony. The pulmonologist likes to tease mom and tells her he is the best looking doctor she has and mom always laughs. He asked mom if she could speak louder and mom yelled really loud and said, “OH SURE I CAN!” We all laughed.
Mom’s CNA was a new person today. The aide knew of mom though through the grapevine. The aide was happily anxious to work with mom. The aide was so loving to mom. The aide even worked with mom to help her take care of herself—giving mom lotion to put on herself (and mom did it!! Not great but she did it!). By the time the CNAs were putting mom in the wheelchair, they were fighting over who she liked best. Mom wanted her make-up on so I put it on for her today. Then, dad, Anthony and I went outside. Dad had to leave and he kept saying good-bye and coming back and saying good-bye and mom said, “Oh geeze he keeps going away and coming back and going away and coming back!!” and she laughed.
The speech therapist came to give mom some more trial foods. She gave mom the choice of yogurt or applesauce—mom chose the yogurt. Then she asked mom if she wanted apple or cranberry juice and mom picked apple. The food still had the blue dye added to it so that the therapist could see if mom aspirated at all. Mom did well and there was no aspiration yesterday (this means food going down the breathing pipe). Mom was VERY confused about how to feed herself at first—VERY…but a short time later, she was feeding herself with the spoon. I think the room and set up were too distracting at first. The roommate’s TV was on too loud! Then the therapist put too many things on mom’s table. Once all was cleared from the table, mom did really well. Mom finished the yogurt and then she had thickened juice—nectar consistency. During the feeding therapy, mom’s friends, Maureen and Flo, came and mom looked up and said, “Oh gee, I have a cast of fans to watch me now!” and laughed. Mom drank the juice with no problems. The therapist suctioned mom and there was no sign of aspiration there. There was also no sign of any secretions at all --- which is great! The therapist asked mom what day it is today and mom thought, then I said, “Yesterday was Thursday so what is today?” Mom said, “You weren’t supposed to tell me that!” Mom knew the day was Friday and said so.
Maureen, Flo, Anthony, Mom and I moved to the lounge to visit. Mom looked at pictures of Maureen’s great-granddaughter and commented a lot as she looked—right on target too! Mom was able to remember Maureen’s family surnames too! She enjoyed looking at the pictures. Mom also was able to keep up with the conversation and to comment appropriately at times as well. Mom left for physical therapy next. When she returned, the therapist said that mom did well but as much as usual. They stood her at the parallel bars today because it is easier to stand there and gives more support. They plan to increase the weights next week.
After Maureen and Flo left, we stayed outside. Anthony asked mom, at one point, if she wanted to go for a walk and mom said, “Actually, someone has to push me.” We began to make some phone calls. Mom called Anthony Michael, Samantha and Lenny. She really spoke loud and clear to Anthony Michael.She also was able to carry on a conversation with him!! She asked questions like: So what are you doing now? Where will you go later? etc. She did well with Sammy's phone call too but talked lower. She had an entirely different type of conversation with Lenny. The variety was great! When Anthony Michael told mom he and Ava were coming tonight to sleep over after Gina's show, mom said, "Oh then they won't be here until like 10:30"---her reference to the time was right on the money!!! At one point, mom looked up and a bird flew overhead and mom asked, "Oh look--what's that?" Stupidly, I said, "It's a bird mom!" She said, "Yes, I know, but it's so big I thought it was an albatross!!" Next, we 3 goofed around and we told mom we were going to play, "Prank Phone Call Speech Therapy" with her!! We called various family members and mom played the prank on them such as, "Do you have Prince Albert in a can?" etc. Mom thought this was hysterical and so did we because she sometimes mixed 2 jokes together. Our family members laughed and enjoyed this too! At one point, the Social Worker (who never really saw mom in a year) saw us outside and said hello to us and especially to mom. Mom gave her a huge smile and was soo attentive and answered all her quesitons...when the person left us, mom wiped the smile from her face, turned to Anthony and said, "Who was that?" and laughed---we all cracked up! Mom was outside for hours today again. It was great for her to see the outdoors again and all the people too. However, she became even more tired then she was all day (she wasn't sleepy, just tired and would often speak in jumbled sentences and very softly with her head facing downward) so at that point, I brought her back inside. She kept asking to go to Gina's show and then also to go home. She kept trying to lift herself out of the chair and walk as well. She was actually able to hold onto the arms of the chair and brace her feet at the bottom of the wheelchair and extend her entire body upward and straight--she did this many, many times---great exercise.
We are going to have a team meeting on Tuesday most likely to discuss the next step in mom's recovery and her eventual discharge. As thrilled as I am...I am sort of nervous too! Dad came to see mom very late in the day in the early evening. He had a fun day of golf with friends. Anthony and I left at that point. Claudia came shortly after dad. She will be with mom until Ava and Anthony Michael arrive. I will let you know how all that goes in tomorrow's blog.
"For God has not given us a spirit of fear, but of power and of love and of a sound mind." 2 Timothy 1:7
Two days ago, Mom talked on the phone, out loud to JoAnn, Angelo, and Claudia!!! She also tried to begin several conversations with Anthony Michael by initiating the conversation herself!!! She asked him questions like, "So, what are you going to do when you leave here today?" Also, when someone asked how long she is married, mom said, "Well, let me see. What year is it now? Hmmm...2011 and I got married in 1959 (it was really 1957)..." and she began to try to do the math to figure out the answer!!!
Dad is doing well thank God though I don't think he truly realizes what it will be like to take mom home in the condition she is currently in. Who knows if we will have to do that or not...a lot is based on rehabilitation. She is currently in a skilled nursing facility so while she can stay there as long as she needs to, the rehabilitation is limited. If she moves to an in-patient rehabilitation center, the rehab will be great but it won't last forever which means that whenever they feel she is plateaued---she will need to go home. This is fine but will or may be difficult if mom can't walk or is in a diaper still or has a feeding tube. Dad won't be as free as he is now---even though he may not think he is free at all. Mom won't be able to be left alone in the current condition she is in. There is a lot to think about.
When I got to mom this morning, she was very agitated and confused…she gets like this when she is overtired and doesn’t sleep. I asked her if she slept well last night and she said no. I believed her based on how she was acting and what she was saying. She kept talking about needing to cut things and about having gone to the dentist and the store and how she’s been waiting for us to take her home. She gets this way when she hasn’t slept or is sleepy; but I will monitor her for a urinary tract infection too. She was nasty and argumentative during this time with me.
By the time Anthony and dad came, mom seemed to perk up more and as the visit progressed, mom became more present and lucid. Anthony did mom’s physical therapy on her legs. It is all thanks to Anthony that mom can stand today---it is only through his perseverance that mom can stand. Then, Anthony and I worked on mom’s arms. We each held one of mom’s hands and asked her to pull herself up. Mom couldn’t do it at first, but then she was able to. We did this type of modified sit ups to about 10. Mom was able to count along and she was even able to remember the count in between stops.
The pulmonologist and the head of respiratory came to see mom in the middle of her getting ready for the day. Mom greeted the pulmonologist with a huge smile and said hello. Then the pulmonlogist said that mom was nothing short of a miracle and the most perfect example of the power of prayer that he ever witnessed. He confirmed that mom’s trach will be removed (decanulated) on Monday morning!! He asked mom to make a fist and she did then he teased her and asked her to box with him and she did—she had just finished doing that with Anthony. The pulmonologist likes to tease mom and tells her he is the best looking doctor she has and mom always laughs. He asked mom if she could speak louder and mom yelled really loud and said, “OH SURE I CAN!” We all laughed.
Mom’s CNA was a new person today. The aide knew of mom though through the grapevine. The aide was happily anxious to work with mom. The aide was so loving to mom. The aide even worked with mom to help her take care of herself—giving mom lotion to put on herself (and mom did it!! Not great but she did it!). By the time the CNAs were putting mom in the wheelchair, they were fighting over who she liked best. Mom wanted her make-up on so I put it on for her today. Then, dad, Anthony and I went outside. Dad had to leave and he kept saying good-bye and coming back and saying good-bye and mom said, “Oh geeze he keeps going away and coming back and going away and coming back!!” and she laughed.
The speech therapist came to give mom some more trial foods. She gave mom the choice of yogurt or applesauce—mom chose the yogurt. Then she asked mom if she wanted apple or cranberry juice and mom picked apple. The food still had the blue dye added to it so that the therapist could see if mom aspirated at all. Mom did well and there was no aspiration yesterday (this means food going down the breathing pipe). Mom was VERY confused about how to feed herself at first—VERY…but a short time later, she was feeding herself with the spoon. I think the room and set up were too distracting at first. The roommate’s TV was on too loud! Then the therapist put too many things on mom’s table. Once all was cleared from the table, mom did really well. Mom finished the yogurt and then she had thickened juice—nectar consistency. During the feeding therapy, mom’s friends, Maureen and Flo, came and mom looked up and said, “Oh gee, I have a cast of fans to watch me now!” and laughed. Mom drank the juice with no problems. The therapist suctioned mom and there was no sign of aspiration there. There was also no sign of any secretions at all --- which is great! The therapist asked mom what day it is today and mom thought, then I said, “Yesterday was Thursday so what is today?” Mom said, “You weren’t supposed to tell me that!” Mom knew the day was Friday and said so.
Maureen, Flo, Anthony, Mom and I moved to the lounge to visit. Mom looked at pictures of Maureen’s great-granddaughter and commented a lot as she looked—right on target too! Mom was able to remember Maureen’s family surnames too! She enjoyed looking at the pictures. Mom also was able to keep up with the conversation and to comment appropriately at times as well. Mom left for physical therapy next. When she returned, the therapist said that mom did well but as much as usual. They stood her at the parallel bars today because it is easier to stand there and gives more support. They plan to increase the weights next week.
After Maureen and Flo left, we stayed outside. Anthony asked mom, at one point, if she wanted to go for a walk and mom said, “Actually, someone has to push me.” We began to make some phone calls. Mom called Anthony Michael, Samantha and Lenny. She really spoke loud and clear to Anthony Michael.She also was able to carry on a conversation with him!! She asked questions like: So what are you doing now? Where will you go later? etc. She did well with Sammy's phone call too but talked lower. She had an entirely different type of conversation with Lenny. The variety was great! When Anthony Michael told mom he and Ava were coming tonight to sleep over after Gina's show, mom said, "Oh then they won't be here until like 10:30"---her reference to the time was right on the money!!! At one point, mom looked up and a bird flew overhead and mom asked, "Oh look--what's that?" Stupidly, I said, "It's a bird mom!" She said, "Yes, I know, but it's so big I thought it was an albatross!!" Next, we 3 goofed around and we told mom we were going to play, "Prank Phone Call Speech Therapy" with her!! We called various family members and mom played the prank on them such as, "Do you have Prince Albert in a can?" etc. Mom thought this was hysterical and so did we because she sometimes mixed 2 jokes together. Our family members laughed and enjoyed this too! At one point, the Social Worker (who never really saw mom in a year) saw us outside and said hello to us and especially to mom. Mom gave her a huge smile and was soo attentive and answered all her quesitons...when the person left us, mom wiped the smile from her face, turned to Anthony and said, "Who was that?" and laughed---we all cracked up! Mom was outside for hours today again. It was great for her to see the outdoors again and all the people too. However, she became even more tired then she was all day (she wasn't sleepy, just tired and would often speak in jumbled sentences and very softly with her head facing downward) so at that point, I brought her back inside. She kept asking to go to Gina's show and then also to go home. She kept trying to lift herself out of the chair and walk as well. She was actually able to hold onto the arms of the chair and brace her feet at the bottom of the wheelchair and extend her entire body upward and straight--she did this many, many times---great exercise.
We are going to have a team meeting on Tuesday most likely to discuss the next step in mom's recovery and her eventual discharge. As thrilled as I am...I am sort of nervous too! Dad came to see mom very late in the day in the early evening. He had a fun day of golf with friends. Anthony and I left at that point. Claudia came shortly after dad. She will be with mom until Ava and Anthony Michael arrive. I will let you know how all that goes in tomorrow's blog.
"For God has not given us a spirit of fear, but of power and of love and of a sound mind." 2 Timothy 1:7
Subscribe to:
Posts (Atom)