Today I started the day with mom. Yesterday her aide never came and dad and I were alone getting her ready for the day. It was great having the aide there today. We got mom ready and she was in a great mood and really sharp today. I bought mom a movement DVD. It has arm movements set to classical music. I put it on and mom, her aide and I moved to the music. I explained to her aide that she should do this every day to keep mom moving. I played a great game with her on her Ipad. She loved it. It was a combination crossword and hidden picture game (two of mom’s favorite things!). First you tapped on the crossword and a clue pops up. You have to figure out the clue and then find the picture of the item in the picture. She loved it. We played four games.
Dad and I had plans to go to BJ wholesale Club today and Terry would stay with mom. When her aide left I told dad that it was so nice out that we should take mom to BJ’s. So we did! We got her ready and put her in the car and took her with us. Mom was so happy to be out. We drove past my house and John came out to say hi. I brought my cat outside (Pacey) to see mom. He is the big mush cat and mom liked seeing him.
Next we drove past Aunt Carol’s house, but she was sick so she waved from the door. We pulled up to BJ’s and put mom in her wheel chair. When we got inside, mom cried. She was so happy to be out in a store. We walked around the store and mom was so happy.
On the way home we stopped at Nathan’s and bought some hot dogs and fries to take home for lunch. Mom called Kathy and told her where she went. She also told her that dad was in Nathans’ and that, “How much ya wanna make a bet her gets the wrong stuff!”
When we were just pulling up to the house, my mom’s friend Flo called and I was in a panic because Flo brings mom the Eucharist on Sunday and we never told her we were taking mom. She was worried and didn’t know where we were. As I was taking mom out of the car, I told mom that Flo was here and she said, “Oh shoot, now I have to share my French fries with her!” She was really on!
We went into the house and mom’s other friend came, Maureen. Maureen was talking about how she was going to now have hot dogs for dinner after smelling the Nathan’s. She a Flo were talking about going to Nathan’s and Maureen said, “Oh I left my debit card at home and I don’t have a lot of cash on me.” Mom said, “For goodness sake, make a contribution and give her a dollar!” We were all cracking up!
~Claud
In the early afternoon today, the phone rang. I answered and was surprised to hear mom's voice!! "Kathy? Guess where I am?!!" she said excitedly. "Where?" I asked. "I'm at BJs!! and I cried when I first went in," she said. Claudia and Dad decided to take mom for a ride today to do some shopping. They drove past Claudia and John's house and John came out with one of their cats to show mom. They also drove past Aunt Carol's house and waved from the door (Aunt Carol has a bad cold). Mom said, "Boy, I'm just sort of really nervous to drive with dad in the car." I laughed and told her we ALL are nervous driving with dad behind the wheel!! hahaha!! Mom then told me that they are going to Nathan's for lunch!! She loves Nathans and she and dad went there often. At one point, Mom lamented that she thinks she will never be able to drive again and began to cry....I found it amazing that she is now aware enough to remember that she once drove and also that she would have liked to continue to drive. Mom's brain injury in the frontal lobe of her brain...where executive functioning takes place. One of the areas of living that this part of the brain controls is the ability to "make plans" of any kind. Mom doesn't make plans since the stroke and aneurysm. And boy...she was definitely a big time "plan maker!!!!" She had lists and lists and lists of things to do surrounding her always. No more. She also doesn't have high blood pressure any more (since she was in her twenties her pressure has been high), so maybe there is something to be said about an inability to plan life compared to just existing in it?!! Mom sounded so normal on the phone. Low volume to her voice, but normal, lucid. I called mom the other day and she hurriedly told me, "Listen, Anthony is here now and we are trying to walk with the walker. I can't talk now." Her ability to be present and with us mentally is truly amazing. When I visited her the other day, she talked and talked and also practiced exercising with a tool that looks like 2 long, thick rubber bands with a black handle on each. Mom uses them to hold on with one hand while pulling and stretching with the other. Claudia bought these for mom. Claudia just texted me as I am writing and said that they are now at Nathans and dad just took their orders and went in to get the food. Mom turned to Claudia and said, "Wanna bet he gets the wrong thing?!!" and laughed. She'sssss bacccccckkkkkk!!!!
"The LORD has done great things for us, and we are filled with joy." Psalm 126:3
Monday, January 30, 2012
Thursday, January 26, 2012
Mom Update, January 25, 2012, Wednesday
Hi,
I am trying to add an attachment of a video, hopefully it works.
THis past Sunday was Anthony Michael's 16th birthday. We all celebrated at mom's house and the best gift that Anthony received was that mom walked for him! She stood out of her wheel chair and walked down the hall with her walker. Dad stands behind her (he doesn't touch her, he is there in case she falls) and Anthony stands in front. Mom lifted her feet and walked down the hall!!!
On another note, last night when I went to see mom I noticed that dad's eye was very blood shot (as if a blood vessel had burst). I told him he should go to the eye doctor since he has had a few surgeries on his eyes and has an eye condition.
Today, around 2pm I called dad to see if he went to the doctor. Mom answered the phone. "Hi" she said in a very cheery voice. I said, "Hi, mom?" very confused. She said yes and I asked her how she was and she said, "Oh I'm fine." I asked how her day was and she said, "Oh I'm having a good day, everything is fine." I then asked to speak to dad and mom said, "Oh he's not here, he went to the eye doctor." I then asked her who was with her and she said, "No one is here. I am alone." My heart stopped! I said, "What? You aren't supposed to be alone. THere has to be someone there." She said, "No. Dad went to the eye doctor and no one is here." I told her to put the phone down and yell very loud, "Is anyone here." She did and no one answered so she said, "See, I'm all alone. You kids make such a big deal out of everything. I am fine the aide comes in a little while" I started to panic and said, "Yell dad's name really loud" and she did. No answer! I asked her what she was doing and she said she was in the living room watching TV. I told her to sit still, not get up and I would call her in a few minutes. I then called my mom's friend Flo who lives around the block and asked her if she would come over! I told her what happened and she said she would call from mom's house.
A few minutes passed and the phone rang, it was Flo. My dad was in the bathroom!!!
I was shaking! Dad got on the phone and said he didn't hear the phone ring or mom calling him. Mom had heard that dad had to go to the eye doctor and when dad left the room she assumed he left to go to the doctor!
Just another boring day with mom!!!
The video is too big. I will try tomorrow.
~Claud
I am trying to add an attachment of a video, hopefully it works.
THis past Sunday was Anthony Michael's 16th birthday. We all celebrated at mom's house and the best gift that Anthony received was that mom walked for him! She stood out of her wheel chair and walked down the hall with her walker. Dad stands behind her (he doesn't touch her, he is there in case she falls) and Anthony stands in front. Mom lifted her feet and walked down the hall!!!
On another note, last night when I went to see mom I noticed that dad's eye was very blood shot (as if a blood vessel had burst). I told him he should go to the eye doctor since he has had a few surgeries on his eyes and has an eye condition.
Today, around 2pm I called dad to see if he went to the doctor. Mom answered the phone. "Hi" she said in a very cheery voice. I said, "Hi, mom?" very confused. She said yes and I asked her how she was and she said, "Oh I'm fine." I asked how her day was and she said, "Oh I'm having a good day, everything is fine." I then asked to speak to dad and mom said, "Oh he's not here, he went to the eye doctor." I then asked her who was with her and she said, "No one is here. I am alone." My heart stopped! I said, "What? You aren't supposed to be alone. THere has to be someone there." She said, "No. Dad went to the eye doctor and no one is here." I told her to put the phone down and yell very loud, "Is anyone here." She did and no one answered so she said, "See, I'm all alone. You kids make such a big deal out of everything. I am fine the aide comes in a little while" I started to panic and said, "Yell dad's name really loud" and she did. No answer! I asked her what she was doing and she said she was in the living room watching TV. I told her to sit still, not get up and I would call her in a few minutes. I then called my mom's friend Flo who lives around the block and asked her if she would come over! I told her what happened and she said she would call from mom's house.
A few minutes passed and the phone rang, it was Flo. My dad was in the bathroom!!!
I was shaking! Dad got on the phone and said he didn't hear the phone ring or mom calling him. Mom had heard that dad had to go to the eye doctor and when dad left the room she assumed he left to go to the doctor!
Just another boring day with mom!!!
The video is too big. I will try tomorrow.
~Claud
Wednesday, January 18, 2012
Mom Update, January 18, 2012, Wednesday
Over the past 2 1/2 weeks, mom has been a busy lady! Dad and I (and sometimes Claudia meets us) have been bringing mom to many doctor/test appointments. Dad and I also spent the day 2 weeks ago at a Medicaid hearing...we are still fighting this issue...it was quite the experience. People watching there was so intriguing, I kept thinking about what I learned about ethnographic note taking and observation and was tempted to do some there! People of every walk of life were there...young, old....every culture....it was sad to see and sadder still to observe how people are treated here...largely with no dignity or respect ("Mary Smith report to counter 10!!!" is just one example of the announcements over the PA system...what if Mary wanted to remain anonymous??? I guess she doesn't get that option...). There were older people like my dad there, spouses together or one spouse who represents a spouse who is ill, or young men fresh out of prison (those conversations were so sad to overhear....), or young mothers with children and babies (I wondered about how many children are admonished for an absence from school who have teachers who are totally unaware of where and how their students spent their day out of school?). Our issue involves the fact that the paperwork for the Medicaid was filed 1 month too late (dad hired someone to do this for him) and now it appears that dad owes $21,000 to the nursing/rehab facility for that ONE MONTH...yes one month costs $21,000!!! We should be able to win the case though...hopefully...please add that to your prayer list...thanks.
Dad and I (and sometimes Claudia met us there) brought mom for a visit to her general practitioner, pre-op testing, the ENT, a throat cat scan, a chest x-ray, a visit to the neurologist, the pulmunologist, a Cat scan of her head, and a botox appointment for her left hand (that was interesting....it was a combination of acupuncture and botox--the needle for the botox gets strategically placed in mom's lower arm muscle and depending where it hit in the muscle, mom was able to freely move her left hand and uncurl her fingers....so can one conclude that the damage after the stroke was less about the message from the brain to the hand and more about muscle damage???? Interesting). I think that was every appointment....but I could be missing some!! Oh...there was also a "urine sample run" to the hospital pre-op unit since mom couldn't fit in the miniscule "handicapped accessible" bathroom at the unit the day of the pre-op testing!!! Their bathroom was sooooo small that, if the wheelchair fit in, the door couldn't close!!! Dad and I had to put the garbage can in the hallway and squeeze ever so tightly into the room with mom in order to help her!!! The toilet was also almost on the floor!!! It was soooo low!!! Who planned this room and WHO passed it for inspection??? Not someone in a wheelchair who needs support from others! Mom has had a busy 2 weeks...
The pulmunologist is the one from the rehab/nursing facility. At seeing mom, the pulmunologist said, "Oh Dotty, it is soo good to see you. Do you remember me? That's OK if you don't? I remember you and the wonderful family you have. You and your husband must have done something right to have such a family support" (this made mom and dad beam...literally beam...like their lives meant something special and were for good because of how we, their children, act. It brought tears to my eyes to see the proud look on their faces....l can't explain it...I don't write this as an exhortation about us or me but about them. Kids don't think much about the dramatic role we play in our parents' lives....or the difference we make in their lives or the meaning our actions bring to their lives.... I know I am guilty of not recognizing that). The pulmunologist reconfirmed that "there must be a God out there in order to witness this kind of love." What a blessing. How many times do I look at the literal situation before me which isn't always a good one and don't recognize the blessings surrounding it???
Good news!! Mom turned a corner last week and has been more motivated to walk and stand. She seems more alert too...not as loopy. Anthony has been working with mom doing physical therapy and he got her to walk with the walker about 10 feet (according to dad's reports). Dad also works with mom too and he got her to use her legs while in the wheelchair to ambulate about 20 feet in the house!! She stands better with the walker and the bars on the walls too. She is getting there!!! I was getting worried about her state of mind----which by the way, was likely influenced by yet ANOTHER urinary tract infection!!! Jo Ann told us about drinking peppermint tea as a preventative (as per Dr. Oz) so we will try this with mom. Mom is now on an antibiotic for the next 7 days. Mom seems to have had an awakening though overall which is making her more alert, aware, and able to try to do things...visual supports help greatly. Claudia and I made charts and lists and schematics on how to do things like get from a sitting position to a standing position. We plan to make daily activity books for mom as well that describe how to complete activities as well. Without the visuals, mom does not do as well.
Ava did speech with mom and Jean has visited and stayed with mom a lot over the last 2 weeks. Anthony Michael, Sammy, Con and Anthony all see mom regularly too, as do John, Claudia and Terry. Claudia does cognitive work with mom using the Life Skills sheets. I had some time last week, in between all mom's appointments, to work on her cognitive skills and physical therapy too. Mom did great on things like explaining figures of speech (ex: "It really burns me up" Mom: "Gets you very angry" or "She eats like a bird" Mom: "She doesn't really eat a lot" or here's a good one: "People don't trust a person who breaks his word" Mom: "To NEGATE what you said" --- no problems there!!).Some of the work sheets cover things like, reading a sentence or two and selecting the best ending to the sentence from a choice of 3; or finding a better word for an underlined word in a sentence (ex. "The leaves blew around the park" Mom: "Twirled"...). Mom does famously with these word related activities...mom was always into words!! However, I notice a decline in her ability to spell words when she writes and also in her writing ability.Her script is hard to read now...it wasn't when it first came back, and she frequently shifts from writing upper case to lower case to script... in the same sentence and sometimes in the same word! This could be due to the fact that she is still integrating information in a logical, functional fashion---and until all the input is arranged properly in her brain...the input will come out in unrefined pieces. That seems to make sense to me. Mom and I also do motor skill practice as well as cognitive skill practice in the form of games in the various waiting rooms of doctors and tests....
Claudia wrote: January 17, 2012I started the day bright and EARLY (4:30am) to get her ready for her hospital procedure. Mom had her kidney stone blasted. She was in a great mood, although she was nervous. I don’t know how to describe her nervousness other than a normal amount of nerves. Over the past few weeks she has been crying a lot, but today she did great. We (Dad, Terry and I) had her in the car by 5:30 and arrived at the hospital early, where we met Kathy. They took her right in and dad and I stayed with her. She did great transferring from her wheelchair to the hospital “chair” (no stretchers anymore unless you need it). The only
thing she had a great deal of difficulty with was the IV. Her sense of touch is very sensitive. It also took a long time for the nurses to find a vein.
I distracted her with the XM radio on my phone. I played spa music and mom was just getting annoyed telling me “There are no words! What kind of music is this?” I then put on 40’s music and she started to
sing along! The nurses got a kick out of it and kept telling her to sing while they tried to get the IV going.
They took mom for an x-ray and I explained to the technician that she is not mobile and can’t walk but He
didn’t understand to what capacity (Or wasn’t listening). I asked if I could go with her and he was annoyed but let me go. I kept asking if he was going to be able to x-ray her in the chair and he didn’t answer me.
He wheeled her in and said, “OK get up on the table (4’ high table)!!! I asked if it could be lowered and he said, “No, why?” I repeated that she can’t walk or use her legs to ambulate and he said, “Oh, no problem I
have steps she can use!!! (OK, What part of she can’t walk, climb steps or ambulate is he not getting!) All of a sudden he said, “Oh, we have a problem.” He stood for a long time thinking and I suggested we get a
stretcher and lower it all the way down and I could transfer her to the stretcher and we can transfer to the x-ray table. He agreed and back we went into the other room. I transferred her to a stretcher and the
nurses escorted her to the x-ray room.
They kept her on the stretcher and at one point I asked the nurses about a bed sore that I noticed this
morning. They propped her up to alleviate the pressure and told me to call her nursing service when we get home to get it looked at. It was a long wait for them to take her to surgery because it was the first day
with paperless charts in the ambulatory surgery unit. They took her and a little over an hour later we received a call that she was OK.Dad was called in to see her a little while later and she was crying and weepy.
Overall she did great with the anesthesia. She wasn’t loopy at all. Kathy and I went in next to stay with mom and she and I and a nurse changed her. She ate two graham crackers and drank Ginger-Ale and two
glasses of water and before you no it she was being sent home. Dad, Terry, mom and I drove home and Terry and I settled her in on the recliner and had her drink some more (as per the doctor). She was very
alert and just little tired. I couldn’t believe how great she did! I stayed for a while and then left. I returned in the evening to put her to bed. She has a different aide on the weekends because her aide is out
of work helping her daughter recover form surgery. This new aide is worth her weight in gold! She is so pleasant and nice. She is great with mom and works so hard to make her clean and comfortable. I left mom all tucked in for the night and thanked God for a smooth surgery with no
major issues.
Please pray for mom’s bed sore, that it doesn’t get worse.Peace and love,~Claud
Mom sees the urologist in 3 weeks following a cat scan of her kidneys in 2 1/2 weeks to see how the stone blasting went. Dad is supposed to strain her urine---not easy at all on a modified toilet seat (may even be impossible to do) so that the urologist can study the stone fragments (now there's an interesting line of work, huh??? NOT.). Mom goes to get the stoma (hole in her throat closed) on March 6....and the mad pre-op testing dash will begin again in late February....
BUT..........MOM IS HOME.....with us.....among us....and for this, hard as it is at times.......IS THE GREATEST THING!!!!
"Give thanks to the Lord for He is good. His love endures forever." 1 Chronicles 16:34
Dad and I (and sometimes Claudia met us there) brought mom for a visit to her general practitioner, pre-op testing, the ENT, a throat cat scan, a chest x-ray, a visit to the neurologist, the pulmunologist, a Cat scan of her head, and a botox appointment for her left hand (that was interesting....it was a combination of acupuncture and botox--the needle for the botox gets strategically placed in mom's lower arm muscle and depending where it hit in the muscle, mom was able to freely move her left hand and uncurl her fingers....so can one conclude that the damage after the stroke was less about the message from the brain to the hand and more about muscle damage???? Interesting). I think that was every appointment....but I could be missing some!! Oh...there was also a "urine sample run" to the hospital pre-op unit since mom couldn't fit in the miniscule "handicapped accessible" bathroom at the unit the day of the pre-op testing!!! Their bathroom was sooooo small that, if the wheelchair fit in, the door couldn't close!!! Dad and I had to put the garbage can in the hallway and squeeze ever so tightly into the room with mom in order to help her!!! The toilet was also almost on the floor!!! It was soooo low!!! Who planned this room and WHO passed it for inspection??? Not someone in a wheelchair who needs support from others! Mom has had a busy 2 weeks...
The pulmunologist is the one from the rehab/nursing facility. At seeing mom, the pulmunologist said, "Oh Dotty, it is soo good to see you. Do you remember me? That's OK if you don't? I remember you and the wonderful family you have. You and your husband must have done something right to have such a family support" (this made mom and dad beam...literally beam...like their lives meant something special and were for good because of how we, their children, act. It brought tears to my eyes to see the proud look on their faces....l can't explain it...I don't write this as an exhortation about us or me but about them. Kids don't think much about the dramatic role we play in our parents' lives....or the difference we make in their lives or the meaning our actions bring to their lives.... I know I am guilty of not recognizing that). The pulmunologist reconfirmed that "there must be a God out there in order to witness this kind of love." What a blessing. How many times do I look at the literal situation before me which isn't always a good one and don't recognize the blessings surrounding it???
Good news!! Mom turned a corner last week and has been more motivated to walk and stand. She seems more alert too...not as loopy. Anthony has been working with mom doing physical therapy and he got her to walk with the walker about 10 feet (according to dad's reports). Dad also works with mom too and he got her to use her legs while in the wheelchair to ambulate about 20 feet in the house!! She stands better with the walker and the bars on the walls too. She is getting there!!! I was getting worried about her state of mind----which by the way, was likely influenced by yet ANOTHER urinary tract infection!!! Jo Ann told us about drinking peppermint tea as a preventative (as per Dr. Oz) so we will try this with mom. Mom is now on an antibiotic for the next 7 days. Mom seems to have had an awakening though overall which is making her more alert, aware, and able to try to do things...visual supports help greatly. Claudia and I made charts and lists and schematics on how to do things like get from a sitting position to a standing position. We plan to make daily activity books for mom as well that describe how to complete activities as well. Without the visuals, mom does not do as well.
Ava did speech with mom and Jean has visited and stayed with mom a lot over the last 2 weeks. Anthony Michael, Sammy, Con and Anthony all see mom regularly too, as do John, Claudia and Terry. Claudia does cognitive work with mom using the Life Skills sheets. I had some time last week, in between all mom's appointments, to work on her cognitive skills and physical therapy too. Mom did great on things like explaining figures of speech (ex: "It really burns me up" Mom: "Gets you very angry" or "She eats like a bird" Mom: "She doesn't really eat a lot" or here's a good one: "People don't trust a person who breaks his word" Mom: "To NEGATE what you said" --- no problems there!!).Some of the work sheets cover things like, reading a sentence or two and selecting the best ending to the sentence from a choice of 3; or finding a better word for an underlined word in a sentence (ex. "The leaves blew around the park" Mom: "Twirled"...). Mom does famously with these word related activities...mom was always into words!! However, I notice a decline in her ability to spell words when she writes and also in her writing ability.Her script is hard to read now...it wasn't when it first came back, and she frequently shifts from writing upper case to lower case to script... in the same sentence and sometimes in the same word! This could be due to the fact that she is still integrating information in a logical, functional fashion---and until all the input is arranged properly in her brain...the input will come out in unrefined pieces. That seems to make sense to me. Mom and I also do motor skill practice as well as cognitive skill practice in the form of games in the various waiting rooms of doctors and tests....
Claudia wrote: January 17, 2012I started the day bright and EARLY (4:30am) to get her ready for her hospital procedure. Mom had her kidney stone blasted. She was in a great mood, although she was nervous. I don’t know how to describe her nervousness other than a normal amount of nerves. Over the past few weeks she has been crying a lot, but today she did great. We (Dad, Terry and I) had her in the car by 5:30 and arrived at the hospital early, where we met Kathy. They took her right in and dad and I stayed with her. She did great transferring from her wheelchair to the hospital “chair” (no stretchers anymore unless you need it). The only
thing she had a great deal of difficulty with was the IV. Her sense of touch is very sensitive. It also took a long time for the nurses to find a vein.
I distracted her with the XM radio on my phone. I played spa music and mom was just getting annoyed telling me “There are no words! What kind of music is this?” I then put on 40’s music and she started to
sing along! The nurses got a kick out of it and kept telling her to sing while they tried to get the IV going.
They took mom for an x-ray and I explained to the technician that she is not mobile and can’t walk but He
didn’t understand to what capacity (Or wasn’t listening). I asked if I could go with her and he was annoyed but let me go. I kept asking if he was going to be able to x-ray her in the chair and he didn’t answer me.
He wheeled her in and said, “OK get up on the table (4’ high table)!!! I asked if it could be lowered and he said, “No, why?” I repeated that she can’t walk or use her legs to ambulate and he said, “Oh, no problem I
have steps she can use!!! (OK, What part of she can’t walk, climb steps or ambulate is he not getting!) All of a sudden he said, “Oh, we have a problem.” He stood for a long time thinking and I suggested we get a
stretcher and lower it all the way down and I could transfer her to the stretcher and we can transfer to the x-ray table. He agreed and back we went into the other room. I transferred her to a stretcher and the
nurses escorted her to the x-ray room.
They kept her on the stretcher and at one point I asked the nurses about a bed sore that I noticed this
morning. They propped her up to alleviate the pressure and told me to call her nursing service when we get home to get it looked at. It was a long wait for them to take her to surgery because it was the first day
with paperless charts in the ambulatory surgery unit. They took her and a little over an hour later we received a call that she was OK.Dad was called in to see her a little while later and she was crying and weepy.
Overall she did great with the anesthesia. She wasn’t loopy at all. Kathy and I went in next to stay with mom and she and I and a nurse changed her. She ate two graham crackers and drank Ginger-Ale and two
glasses of water and before you no it she was being sent home. Dad, Terry, mom and I drove home and Terry and I settled her in on the recliner and had her drink some more (as per the doctor). She was very
alert and just little tired. I couldn’t believe how great she did! I stayed for a while and then left. I returned in the evening to put her to bed. She has a different aide on the weekends because her aide is out
of work helping her daughter recover form surgery. This new aide is worth her weight in gold! She is so pleasant and nice. She is great with mom and works so hard to make her clean and comfortable. I left mom all tucked in for the night and thanked God for a smooth surgery with no
major issues.
Please pray for mom’s bed sore, that it doesn’t get worse.Peace and love,~Claud
Mom sees the urologist in 3 weeks following a cat scan of her kidneys in 2 1/2 weeks to see how the stone blasting went. Dad is supposed to strain her urine---not easy at all on a modified toilet seat (may even be impossible to do) so that the urologist can study the stone fragments (now there's an interesting line of work, huh??? NOT.). Mom goes to get the stoma (hole in her throat closed) on March 6....and the mad pre-op testing dash will begin again in late February....
BUT..........MOM IS HOME.....with us.....among us....and for this, hard as it is at times.......IS THE GREATEST THING!!!!
"Give thanks to the Lord for He is good. His love endures forever." 1 Chronicles 16:34
Sunday, January 8, 2012
Mom Update, January 8, 2012, Sunday
"How We Spent Our Winter Vacation" an essay by the family!! hahaha!!!
I'll back track a bit in a little more detail as I begin this post. On the Friday before New Year's Eve, Claudia, dad and I brought mom to the ENT (Ear Nose Throat Doctor). She went there to have the stoma (hole in her neck) checked. I'll talk about the "transportation challenge" first!
Let me say also that it is no easy task to get mom in and out of the car. Up until yesterday, when dad was finally able to buy a new car and get rid of his van, dad had to borrow Anthony and Con's car in order to take mom anywhere. The van was too high up, making the seats also too high up for mom to get onto. Mom barely walks now so she needs to use a car that has seats lower to or near her hip area in order to slide over from the wheelchair to a standing position while holding onto the car door at the point of the open window, and then pivot (with or without, mostly with) assistance. All this happens with a 3 man team, though dad and I or dad and Claudia have been able to accomplish the shift from wheelchair to car and vice versa with just a 2 man team, but it's difficult at best.
With the 3 man team, the passenger car door is opened along with its window. Then, one person stands behind the wheelchair and grabs the top of mom's pants in order to potentially assist in her standing from the chair, this person also has the job of strategically pulling the wheelchair out from under and away from mom when she stands. Mom holds onto the car door through its open window as a support to stand. This happens while another person (person #2) stands to the side of mom or slightly in front of her (usually this is dad or Claudia). This person (#2) positions mom's feet correctly on the pavement in front of her so that she can stand in a balanced and well self-supported manner. Person #2 also then assists mom in supporting her stand position and then helps her to either pivot or swings her into the car on the seat. The 3rd person enters the car from the driver's side and lays across the driver and passenger seats, in order to either grab mom's arm under the armpit or the back of her pants, in order to pull her into the car and onto the passenger side seat better. The person in dad's position now has the job of positioning mom's feet correctly on the driveway before her so that she can grasp the overhead handle and shimmy herself into the car. At this point, the person manning the wheelchair is done in the 3 person team situation. However, in the 2 person team situation, the wheelchair person doubles over to the person who lays across the seat's position.
OK...we're finally in the car!! Back to the ENT (Ear Nose Throat Doctor) appointment for the stoma. The doctor checked mom's ears and irrigated them (put a huge, plastic bib around mom and Claudia held a small bowl under mom's ear while I held her hands and talked to her to distract her as the doctor ran a syringe-like tool that shoots water from it into each of mom's ears). Mom had wax plugs in each ear (literally wax build up that solidified into a plug)---no wonder she had difficulty hearing even with her hearing aids!!
Once the irrigation was done, the doctor examined the stoma. The doctor said, as Claudia said all along, the stoma has NOT closed at all. The doctor appeared shocked at hearing how long mom was on a vent, and said that the stoma would NEVER close on its own. Remember, many other professionals (not ENTs), told us that the stoma WOULD close on its own. The specialist knows best (ENT). The ENT checked out mom's vocal chords and wind pipe and larynx next. To this, mom had to be "scoped." This meant that the doctor (after trying without it first) numbed mom's nostril with a numbing solution on a huge, long cotton ball (that was inserted into her nose). [Aside, mom's nose runs non-stop since she is home. She needs tissues all the time. Claudia and I have made a fun joke of it the way we did when mom kept asking for her 'blue make up bag.' I tell mom I am going to send her to a tissue users support group: OTUA or Over Tissue Users Anonymous and she laughs.] But I said all that to say that mom's nose is HIGHLY sensitive, as are ALL her senses since the shunt went in...so this procedure bothered her greatly.
After the numbing procedure, Claudia stood on one side of mom, and I on the other. Each of us had to hold mom's hands down and talk to her or sing to her to distract her from the 'scoping' which involved having a small, thin tube, with a scope/camera of sorts in it, inserted into mom's numbed nostril and down into her throat so that the ENT could view her larynx, wind pipe and vocal chords. The larynx and vocal chords looked fine--PTL!! But a cat scan was needed in order to view the wind pipe better. The whole procedure took about a minute or under. Mom was like a child --- who wouldn't be?? She gagged and yelled and wiggled to get free while the scoping took place. Luckily, there was an x-ray lab down the hall and we got the cat scan after a short wait....but that was yet another adventure.
For the Cat scan, Claudia and I had to get mom from the wheelchair onto that thin, long board-like table and then hold her tightly to support her as the table was raised for the scan. We had to wear lead vests and continue to hold mom AND to keep her still (remember that she tremors when she is anxious or tired...) while the scan was taken. We reversed the process at the end and succeeded!! Amen. but.....mom needed to use the bathroom......
Another adventure. The bathroom was small (I found out last week that it actually was palatial compared to the pint-sized one at the pre-op center). Mom, the wheelchair, Claudia and I all crammed into the tiny bathroom in order to assist mom. Though most "handicapped accessible" bathrooms have bars on the walls (whoopee---like that alone makes it accessible??!!), the toilets are practically at floor level!!! Who designs these things??!!! How do they pass inspection???!!
ENT wrap up: Mom will go for a surgical procedure to close the stoma and the surrounding area some time in February or early March (we have to space the procedures apart so there is no side effects from the anesthesia). The procedure will last about 45 minutes to an hour in total and will require general anesthesia and a hospital stay overnight just to be safe.
Mom and dad celebrated New Year's Eve together with various visits from our family members throughout the day. The whole family went to our favorite restaurant on New Year's Day for dinner and that was followed by a traditional family ball game in mom and dad's yard!! Depending on the season, a coinciding ball game is played by all family members young and old alike (Dad is the oldest at 79). This time, given the season, we all played FOOTBALL!!! It was a lot of laughs and dad spilled to the ground while running with a pass (he was fine!!) and everyone laughed and laughed!!
On Tuesday of this last week (after New Year's Day), dad and I took mom to her pre-op testing for the lithroscopy (??) or blasting of her kidney stone which is happening on Monday, January 16 at a highly competent but distant (45 minutes away at least) hospital. While driving in the car, mom kept trying to identify the towns we were in and she also read the signs on the road (have you ever seen the movie, "Forget Paris" with Deborah Winger and Billy Crystal???....). Mom recognized some towns and also kept trying to guess which direction we were driving in saying, "Are we going south now?" She was always 180 degrees off in her direction.
Mom did well during the pre-op testing. However, the only mishaps there involved a technician who kept telling me to keep mom perfectly still for the EKG-- ????? and how do I do that?? She tremors......I did my best by holding her head and shoulders still with my hands!! haha!! After an unsuccessful attempt, we tried again, but only to find out that the technician had the wires in the wrong place and had to try a 3rd attempt!! Oh boy....hahaha! The technician also handed me a tiny, lidded, plastic jar and told me to bring mom to the bathroom so that she could give me a urine sample...?????!!!!!! And how do I do that using only a tiny jar??? Picture the possibilities.......!!!!! The technician finally conceded and gave us a tray to hang on the toilet and collect the urine from there. Gee whiz. The bathroom there was miniscule!!!! Dad, mom, the wheelchair and I all crammed into the bathroom together---after I had to remove the garbage pail from the room!!! We barely got the door closed!!! Literally!!
The physical therapist came in the morning on Tuesday before the pre-op testing. Mom did AWESOME!!! She stood practically alone!! She took steps with the walker, and she transferred really smoothly and really alone (with only the walker) from the chair to the wheelchair and back. She side stepped!! She pivoted!! Up until that day, mom had no motivation or ambition to work hard in therapy or with us. It seemed like mom's brain took about 4 weeks to begin to reintegrate itself to the environment of home. Mom always knew where she was, but had difficulty carrying over all the skills she had when she was in the rehab facility. She regressed terribly. This is partially our fault because we aren't keeping up the grueling work we did with her in the rehab facility. Most of us just visit with her now....love on her...hang out with her at home...and we forget that she still needs to work hard in order to improve. We do still work with her---Anthony does physical therapy with her, Claudia and I work on cognition, Jean also comes several times a week to be with mom while dad goes out and Jean works with her too. BUT...mom also tells us she doesn't want to or can't do what we want her to do physically too! She also gets a natural work out getting dressed and using the toilet or getting in and out of bed at home too. We all need to balance and reintegrate the work with the 'hanging out' times now that mom is home. I will write more about mom's cognitive skills tomorrow.
The physical therapist told me, on Tuesday, that mom had plateaued in her work (wasn't making progress or enough of it) and therefore would not be continuing services with mom. However, mom did well---fabulously the Thursday before New Year's and on Tuesday and, if mom did well again on Friday, services would continue. If not, then services would cease for now. The physical therapist told mom that she was finally working hard---the therapist felt that, prior to Thursday/Tuesday, mom would quit working when the 'going got tough.' The therapist explained that we could call the agency for a re-evaluation any time we feel that mom has improved and services may/may not continue after another evaluation---but this is in 2-3-4 weeks from now. The therapist stressed the ultimate importance of our family continuing to work with mom in a scheduled fashion in order for her to improve.
We all see mom a lot now that she is home. Anthony, Con and the kids come over or call (Sammy loves to talk to Nonny on the phone!!), Claudia and her family visit often, Terry lives with mom and dad, and I come to help out during the week. We all try our best to relieve dad so that he doesn't go stir crazy in the house all day. Lenny also drops in when he can (he and I live the farthest away now!).
I also found out that Medicare has hired people to do retrospective audits on services. This means that people who received services 1, 2, 3 years ago are being audited to see if the services were helping or not. In many instances, Medicare is making a case to say that the services were provided needlessly and then Medicare collects $$$$ BACK from service provider agencies!! Agencies can go out of business because of this--causing a shortage of service providers. How do people get the help they need???!!! Especially those with a head injury!!!???? Progress for stroke and head injury patients is generally a slow, variable progression..... And...none of the therapists use VISUAL SUPPORTS/AIDS which are VITAL to recovery!! Claudia and I made many that we use with mom (and her aids). I will write about the visual supports we made tomorrow.
Long story short: the occupational and physical therapists dropped mom's services after 4 weeks. Friday was her last day of service. Mom took the news very hard and can't stop crying (literally) since Friday. When I saw her Friday night, she kept saying, "I can't believe they left me..." and sobbing. She couldn't be consoled at all yesterday by Anthony, Con, Anthony Michael, Sam, Claudia, Terry, Ava....by no one. Dad is very, very discouraged by the drop of services too. Dare I say that I knew this would happen? It's healthcare system. Some of the guidelines are necessary for sure...but others just don't make sense....it's complicated to say the least. On the bright side, up until Friday, mom had turned a corner....the integration was taking shape and you could see a change in her affect and abilities. She just needs to either cry herself out or to stop crying and focus again on the positives. Please pray for mom's continued progress...your prayers count so much. Also, please pray for perseverance, endurance, and stamina but with joy in the journey for mom and dad. As always thanks........
I will continue again to write tomorrow.
"And we know that all things work together for good to those who love God and are called according to His purpose." Romans 8:28
I'll back track a bit in a little more detail as I begin this post. On the Friday before New Year's Eve, Claudia, dad and I brought mom to the ENT (Ear Nose Throat Doctor). She went there to have the stoma (hole in her neck) checked. I'll talk about the "transportation challenge" first!
Let me say also that it is no easy task to get mom in and out of the car. Up until yesterday, when dad was finally able to buy a new car and get rid of his van, dad had to borrow Anthony and Con's car in order to take mom anywhere. The van was too high up, making the seats also too high up for mom to get onto. Mom barely walks now so she needs to use a car that has seats lower to or near her hip area in order to slide over from the wheelchair to a standing position while holding onto the car door at the point of the open window, and then pivot (with or without, mostly with) assistance. All this happens with a 3 man team, though dad and I or dad and Claudia have been able to accomplish the shift from wheelchair to car and vice versa with just a 2 man team, but it's difficult at best.
With the 3 man team, the passenger car door is opened along with its window. Then, one person stands behind the wheelchair and grabs the top of mom's pants in order to potentially assist in her standing from the chair, this person also has the job of strategically pulling the wheelchair out from under and away from mom when she stands. Mom holds onto the car door through its open window as a support to stand. This happens while another person (person #2) stands to the side of mom or slightly in front of her (usually this is dad or Claudia). This person (#2) positions mom's feet correctly on the pavement in front of her so that she can stand in a balanced and well self-supported manner. Person #2 also then assists mom in supporting her stand position and then helps her to either pivot or swings her into the car on the seat. The 3rd person enters the car from the driver's side and lays across the driver and passenger seats, in order to either grab mom's arm under the armpit or the back of her pants, in order to pull her into the car and onto the passenger side seat better. The person in dad's position now has the job of positioning mom's feet correctly on the driveway before her so that she can grasp the overhead handle and shimmy herself into the car. At this point, the person manning the wheelchair is done in the 3 person team situation. However, in the 2 person team situation, the wheelchair person doubles over to the person who lays across the seat's position.
OK...we're finally in the car!! Back to the ENT (Ear Nose Throat Doctor) appointment for the stoma. The doctor checked mom's ears and irrigated them (put a huge, plastic bib around mom and Claudia held a small bowl under mom's ear while I held her hands and talked to her to distract her as the doctor ran a syringe-like tool that shoots water from it into each of mom's ears). Mom had wax plugs in each ear (literally wax build up that solidified into a plug)---no wonder she had difficulty hearing even with her hearing aids!!
Once the irrigation was done, the doctor examined the stoma. The doctor said, as Claudia said all along, the stoma has NOT closed at all. The doctor appeared shocked at hearing how long mom was on a vent, and said that the stoma would NEVER close on its own. Remember, many other professionals (not ENTs), told us that the stoma WOULD close on its own. The specialist knows best (ENT). The ENT checked out mom's vocal chords and wind pipe and larynx next. To this, mom had to be "scoped." This meant that the doctor (after trying without it first) numbed mom's nostril with a numbing solution on a huge, long cotton ball (that was inserted into her nose). [Aside, mom's nose runs non-stop since she is home. She needs tissues all the time. Claudia and I have made a fun joke of it the way we did when mom kept asking for her 'blue make up bag.' I tell mom I am going to send her to a tissue users support group: OTUA or Over Tissue Users Anonymous and she laughs.] But I said all that to say that mom's nose is HIGHLY sensitive, as are ALL her senses since the shunt went in...so this procedure bothered her greatly.
After the numbing procedure, Claudia stood on one side of mom, and I on the other. Each of us had to hold mom's hands down and talk to her or sing to her to distract her from the 'scoping' which involved having a small, thin tube, with a scope/camera of sorts in it, inserted into mom's numbed nostril and down into her throat so that the ENT could view her larynx, wind pipe and vocal chords. The larynx and vocal chords looked fine--PTL!! But a cat scan was needed in order to view the wind pipe better. The whole procedure took about a minute or under. Mom was like a child --- who wouldn't be?? She gagged and yelled and wiggled to get free while the scoping took place. Luckily, there was an x-ray lab down the hall and we got the cat scan after a short wait....but that was yet another adventure.
For the Cat scan, Claudia and I had to get mom from the wheelchair onto that thin, long board-like table and then hold her tightly to support her as the table was raised for the scan. We had to wear lead vests and continue to hold mom AND to keep her still (remember that she tremors when she is anxious or tired...) while the scan was taken. We reversed the process at the end and succeeded!! Amen. but.....mom needed to use the bathroom......
Another adventure. The bathroom was small (I found out last week that it actually was palatial compared to the pint-sized one at the pre-op center). Mom, the wheelchair, Claudia and I all crammed into the tiny bathroom in order to assist mom. Though most "handicapped accessible" bathrooms have bars on the walls (whoopee---like that alone makes it accessible??!!), the toilets are practically at floor level!!! Who designs these things??!!! How do they pass inspection???!!
ENT wrap up: Mom will go for a surgical procedure to close the stoma and the surrounding area some time in February or early March (we have to space the procedures apart so there is no side effects from the anesthesia). The procedure will last about 45 minutes to an hour in total and will require general anesthesia and a hospital stay overnight just to be safe.
Mom and dad celebrated New Year's Eve together with various visits from our family members throughout the day. The whole family went to our favorite restaurant on New Year's Day for dinner and that was followed by a traditional family ball game in mom and dad's yard!! Depending on the season, a coinciding ball game is played by all family members young and old alike (Dad is the oldest at 79). This time, given the season, we all played FOOTBALL!!! It was a lot of laughs and dad spilled to the ground while running with a pass (he was fine!!) and everyone laughed and laughed!!
On Tuesday of this last week (after New Year's Day), dad and I took mom to her pre-op testing for the lithroscopy (??) or blasting of her kidney stone which is happening on Monday, January 16 at a highly competent but distant (45 minutes away at least) hospital. While driving in the car, mom kept trying to identify the towns we were in and she also read the signs on the road (have you ever seen the movie, "Forget Paris" with Deborah Winger and Billy Crystal???....). Mom recognized some towns and also kept trying to guess which direction we were driving in saying, "Are we going south now?" She was always 180 degrees off in her direction.
Mom did well during the pre-op testing. However, the only mishaps there involved a technician who kept telling me to keep mom perfectly still for the EKG-- ????? and how do I do that?? She tremors......I did my best by holding her head and shoulders still with my hands!! haha!! After an unsuccessful attempt, we tried again, but only to find out that the technician had the wires in the wrong place and had to try a 3rd attempt!! Oh boy....hahaha! The technician also handed me a tiny, lidded, plastic jar and told me to bring mom to the bathroom so that she could give me a urine sample...?????!!!!!! And how do I do that using only a tiny jar??? Picture the possibilities.......!!!!! The technician finally conceded and gave us a tray to hang on the toilet and collect the urine from there. Gee whiz. The bathroom there was miniscule!!!! Dad, mom, the wheelchair and I all crammed into the bathroom together---after I had to remove the garbage pail from the room!!! We barely got the door closed!!! Literally!!
The physical therapist came in the morning on Tuesday before the pre-op testing. Mom did AWESOME!!! She stood practically alone!! She took steps with the walker, and she transferred really smoothly and really alone (with only the walker) from the chair to the wheelchair and back. She side stepped!! She pivoted!! Up until that day, mom had no motivation or ambition to work hard in therapy or with us. It seemed like mom's brain took about 4 weeks to begin to reintegrate itself to the environment of home. Mom always knew where she was, but had difficulty carrying over all the skills she had when she was in the rehab facility. She regressed terribly. This is partially our fault because we aren't keeping up the grueling work we did with her in the rehab facility. Most of us just visit with her now....love on her...hang out with her at home...and we forget that she still needs to work hard in order to improve. We do still work with her---Anthony does physical therapy with her, Claudia and I work on cognition, Jean also comes several times a week to be with mom while dad goes out and Jean works with her too. BUT...mom also tells us she doesn't want to or can't do what we want her to do physically too! She also gets a natural work out getting dressed and using the toilet or getting in and out of bed at home too. We all need to balance and reintegrate the work with the 'hanging out' times now that mom is home. I will write more about mom's cognitive skills tomorrow.
The physical therapist told me, on Tuesday, that mom had plateaued in her work (wasn't making progress or enough of it) and therefore would not be continuing services with mom. However, mom did well---fabulously the Thursday before New Year's and on Tuesday and, if mom did well again on Friday, services would continue. If not, then services would cease for now. The physical therapist told mom that she was finally working hard---the therapist felt that, prior to Thursday/Tuesday, mom would quit working when the 'going got tough.' The therapist explained that we could call the agency for a re-evaluation any time we feel that mom has improved and services may/may not continue after another evaluation---but this is in 2-3-4 weeks from now. The therapist stressed the ultimate importance of our family continuing to work with mom in a scheduled fashion in order for her to improve.
We all see mom a lot now that she is home. Anthony, Con and the kids come over or call (Sammy loves to talk to Nonny on the phone!!), Claudia and her family visit often, Terry lives with mom and dad, and I come to help out during the week. We all try our best to relieve dad so that he doesn't go stir crazy in the house all day. Lenny also drops in when he can (he and I live the farthest away now!).
I also found out that Medicare has hired people to do retrospective audits on services. This means that people who received services 1, 2, 3 years ago are being audited to see if the services were helping or not. In many instances, Medicare is making a case to say that the services were provided needlessly and then Medicare collects $$$$ BACK from service provider agencies!! Agencies can go out of business because of this--causing a shortage of service providers. How do people get the help they need???!!! Especially those with a head injury!!!???? Progress for stroke and head injury patients is generally a slow, variable progression..... And...none of the therapists use VISUAL SUPPORTS/AIDS which are VITAL to recovery!! Claudia and I made many that we use with mom (and her aids). I will write about the visual supports we made tomorrow.
Long story short: the occupational and physical therapists dropped mom's services after 4 weeks. Friday was her last day of service. Mom took the news very hard and can't stop crying (literally) since Friday. When I saw her Friday night, she kept saying, "I can't believe they left me..." and sobbing. She couldn't be consoled at all yesterday by Anthony, Con, Anthony Michael, Sam, Claudia, Terry, Ava....by no one. Dad is very, very discouraged by the drop of services too. Dare I say that I knew this would happen? It's healthcare system. Some of the guidelines are necessary for sure...but others just don't make sense....it's complicated to say the least. On the bright side, up until Friday, mom had turned a corner....the integration was taking shape and you could see a change in her affect and abilities. She just needs to either cry herself out or to stop crying and focus again on the positives. Please pray for mom's continued progress...your prayers count so much. Also, please pray for perseverance, endurance, and stamina but with joy in the journey for mom and dad. As always thanks........
I will continue again to write tomorrow.
"And we know that all things work together for good to those who love God and are called according to His purpose." Romans 8:28
Monday, January 2, 2012
Mom Update, January 1, 2012, Sunday, New Year's Day
I can’t believe it is 2012. Mom had a busy weekend. It started yesterday when her aide took the day off for New Years Eve. We were given two substitute aides who did not know mom or how to work with her. Dad called me to come over but I wasn’t home and I wasn’t close enough to come. I finished up what I was doing and went to see mom. She was still in her pajamas at 10:30. (Dad left when I arrived to go run erransds. It is important that he get out and go places so he isn’t cooped up in the house.) The aide didn’t seem to see any problem with this. I understood that it was going to be a difficult day so I washed and changed mom. I sat in the living room with her and we started to do a crossword puzzle. She was very fidgety and said she couldn’t sit still. I took out her walker and placed it in front of her and had her stand while I counted. She stood for a count of 15. Then she used her arms and her feet to skooch back in the chair. We kept doing the puzzle until she was fidgety again. I took out the bicycle pedal machine and put it on the lap tray. I placed her hands on the pedals and had her pedal with her hands for about 5 minutes. She did well. We finished the puzzle and mom knew a large majority of the answers.
I made mom lunch and she ate well. After lunch we did a worksheet. Dad came back and I left. Mom has continually been inconsistently inconsistent. There are days when she is fine emotionally and times when she cries for a whole day. Yesterday she cried a lot. There are times within a day that she is able to pull herself up and stand at the bar independently nice and straight and then there are times when she is barely able to pull herself up and she is all hunched over. One of the many aides that mom has told the agency that she needs a Sarita lift in the home because she isn’t consistent enough and the aides will get hurt. The PT told us this last week and it was like someone punched us n the stomach. I feel like it is a step back. If she uses the Sarita, she will have to use a commode and I just think of the dignity in that (or the lack of dignity). We are at a stand still right now. I think we are waiting for her doctor to write prescriptions for a Sarita. Well, actually we have to call the doctor first.
Dad bought some treats for him and her to have for New Years. They had their own little party.
I went to dad’s Sunday morning so dad could go to church. Kathy went ot New Jersey to pick up Aunt Sophie. Her aide was back and we gave her a shower. Many of the aides won’t shower her and it is very frustrating. Someone has to be there and force the issue (although, on the weekend the aide always showers her). We set mom up with breakfast and then I left after breakfast. I was called back to help her with the bathroom. She stood great and followed every command. She has issues with sensory input. She can’t tolerate the initial touch – when someone first touches her. If I tell her what I am going to touch and rub the area first she does better.
Speaking of that…She went to the ENT on Friday and Kathy and Dad and I accompanied her. If I rubbed her ears before the doctor put a scope in she did much better. If we gave her explicit directions and there were no surprises, she did better. He sent mom for a CAT scan of her stoma to make sure it is OK for surgery. He suggested we have it closed up surgically. He said she would swallow better, breathe better, cough more productively and be able to blow her nose better. It is also better if it is closed so she wouldn’t be susceptible to infection. He has done these many times and was comfortable suggesting we get it done. Kathy and I had to get her on a CAT scan table and we did it!!! It was not easy.
Today we all went to Café Gio, which is our tradition. We always go there on New Years Day. We had a great time. After, we went back to the house and the kids played football in the yard with Anthony and DAD!!! Dad ran around the yard and even fell at one point. We were flipping out but he got up and went in the house. He laughed, we all laughed! It was a great way to start off the year.
We have a lot to consider in the new year. Do we keep trying to get her to stand and walk? Do we get a Sarita? Do we concede to the aides during the week and what they will do and not do? Do we try to get there in the morning to guide them until they “get it?”
Please pray for our family as we continue our journey in the new year.
Peace and Love in the New Year,
~Claud
I made mom lunch and she ate well. After lunch we did a worksheet. Dad came back and I left. Mom has continually been inconsistently inconsistent. There are days when she is fine emotionally and times when she cries for a whole day. Yesterday she cried a lot. There are times within a day that she is able to pull herself up and stand at the bar independently nice and straight and then there are times when she is barely able to pull herself up and she is all hunched over. One of the many aides that mom has told the agency that she needs a Sarita lift in the home because she isn’t consistent enough and the aides will get hurt. The PT told us this last week and it was like someone punched us n the stomach. I feel like it is a step back. If she uses the Sarita, she will have to use a commode and I just think of the dignity in that (or the lack of dignity). We are at a stand still right now. I think we are waiting for her doctor to write prescriptions for a Sarita. Well, actually we have to call the doctor first.
Dad bought some treats for him and her to have for New Years. They had their own little party.
I went to dad’s Sunday morning so dad could go to church. Kathy went ot New Jersey to pick up Aunt Sophie. Her aide was back and we gave her a shower. Many of the aides won’t shower her and it is very frustrating. Someone has to be there and force the issue (although, on the weekend the aide always showers her). We set mom up with breakfast and then I left after breakfast. I was called back to help her with the bathroom. She stood great and followed every command. She has issues with sensory input. She can’t tolerate the initial touch – when someone first touches her. If I tell her what I am going to touch and rub the area first she does better.
Speaking of that…She went to the ENT on Friday and Kathy and Dad and I accompanied her. If I rubbed her ears before the doctor put a scope in she did much better. If we gave her explicit directions and there were no surprises, she did better. He sent mom for a CAT scan of her stoma to make sure it is OK for surgery. He suggested we have it closed up surgically. He said she would swallow better, breathe better, cough more productively and be able to blow her nose better. It is also better if it is closed so she wouldn’t be susceptible to infection. He has done these many times and was comfortable suggesting we get it done. Kathy and I had to get her on a CAT scan table and we did it!!! It was not easy.
Today we all went to Café Gio, which is our tradition. We always go there on New Years Day. We had a great time. After, we went back to the house and the kids played football in the yard with Anthony and DAD!!! Dad ran around the yard and even fell at one point. We were flipping out but he got up and went in the house. He laughed, we all laughed! It was a great way to start off the year.
We have a lot to consider in the new year. Do we keep trying to get her to stand and walk? Do we get a Sarita? Do we concede to the aides during the week and what they will do and not do? Do we try to get there in the morning to guide them until they “get it?”
Please pray for our family as we continue our journey in the new year.
Peace and Love in the New Year,
~Claud
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