Hello Again,
It was a lovely Easter day here. We also had a lovely dinner with Mary & Randy, Melissa and her boyfriend Mike (we really like him!), and Paul. Mom was beautiful in a new, deep turquoise silky tank top with matching sort-of-sheer jacket. It had a circle ruffle at the elbow. She wore her pearls too. I am kicking myself because I did not take a picture. She looked so pretty. I will try to have her wear that again soon, and take a pic then.
I have told this story to some of you, and some of you were first-hand witnesses. But here it goes again. Mary had made a gorgeous layered strawberry shortcake trifle dessert in a footed glass bowl. It was as tasty as you could imagine. So, Gram and I were sharing a serving of this. When it was gone, I decided I would like a bit more, so I said, "Gram says she would like more", as I passed my bowl back to Mary. There was somewhat of a clamor around the table as my statement was vociferously refuted by people who are supposed to love me. I then lied further, saying that Gram may have whispered this to me, or communicated by pointing to the dessert, and that is why no one but me heard her.
Suddenly, she clearly piped up, "Gram DOES NOT want more dessert!"
She has not spoken a complete sentence for a long time, nor has her speech been very intelligible. It was so much fun to know that she was listening then, and not about to let me get away with bending the truth.
On another note, I must say again that Gram continues to lose interest in eating. Today, for example, she could only eat half of her oatmeal, when a week and a half ago, she would eat the whole serving. Last night, she also began to show signs of having forgotten how to use a straw, after having been able to use one at Easter dinner. We struggled for a bit, then just went to a transparent glass. That way, I could see what she was getting related to the angle at which I held the glass. I have made her choke a few times, and the straws really helped us avoid that. Maybe this skill will come back to her; we will just have to see.
Several hours later, after I wrote this whole post>>>.....wow....how quickly things can change. Mom was able to get up from bed, use the commode, get in wheelchair, and get to the table. She ate some of Randy's luscious home-made chicken noodle soup (yes, even the noodles are home-made), drank a whole Ensure, 8 oz water, 8 oz milk,
and had an ice cream cup for dessert. She used the straw very well! Just wanted to let you know.
We need to be aware of the fact that if Mom's ability to take in nutrition and fluids continues to reduce, she could be leaving us this spring. I have heard some people say that without nutrition, a person could live for two weeks. Without water, maybe several days. We can give ice chips and swab Mom's mouth, though, if she can no longer drink, but another issue is swallowing. Niki says that some people forget to swallow, and then, giving fluids will cause choking. So far Mom can swallow, if we can get the fluids past her clenched teeth. Maybe she has decided that she is ready to be finished with all this, and she is taking advantage of something that she has control of.
I will try to get a weight on Gram tomorrow, if her feet do not hurt too much to stand on the scale.
Over the weekend, when we would get her to her feet to transfer, Mom would cry out that her feet hurt. She had difficulty taking small steps to turn herself around and sit in the wheelchair. It was obviously quite painful. We looked at her feet last night, and could not see anything. Today, however, both feet are swollen, and there are some red hot spots here and there. We would put a cold pack on them, but cold is very aversive for Mom. She probably would not be able to tolerate that. So we are making sure that her feet are elevated quite a bit of the time. Niki is coming in the morning to check this out.
Another interesting thing: we have talked about the fact that Gram has been seeing various people: the little boy with red hair, John, Edward, J.J., and 'the beautiful woman'. This week, for three days in a row, she asked me, 'Who is that tall gentleman?". Since I was only aware of the two of us there. I asked what he looked like, what color hair he had. She was able to say one time that he had dark hair, but that was it for describing this mystery man. I like to think it may have been Dad, checking in on her. Others may think that her brain is hallucinating. Just putting it out there for your consideration.
This experience of being with Mom is really quite rich in learning patience, learning how to accept new limitations, confusions, fatigue, and silly stuff like frustration with equipment.
There have been hilarious times, cozy times, times that make your heart swell.( ie: when Mom so often says, "Thank you so much" for the smallest thing. She also takes our hands and looks into our eyes, with some confusion in hers. We give her our name, and the confusion leaves her face, and she smiles and squeezes our hands.
Hospice continues to be so good to us. On Saturday, Mary, one of their nurses, volunteered to come sit with Mom so I could go out to lunch with Lindsay and her mom. We went to a newer place, called 'Kebobs'; the food was wonderful, and reasonably priced. After that, we went down to 'boutique row', the converted railroad station on 8th street. We wandered in and out of all the shops. In one of them, they were having a drawing to celebrate the fact that they now carry Vera Bradley bags. We all put our names in, and they called me today. I won the grand prize, an $88 tote that could be a carry-on! I have never had a bag that cost more than $20, I think. Mostly because I love searching for designer bags at Goodwill, where they are about $3. (...the thrill of the hunt.....) But this was fun, too! Mary got off early today, came to sit with Mom so I could go pick it up. It is very pretty, with about a dozen handy pockets. I may take it on the plane to Indiana when I go to Alex's graduation.
OK, should get this posted and get going.
Love to all!
Keep up the good work, Aunt Mary!
Annie and Gramma Trish the Dish
Monday, April 25, 2011
Friday, April 22, 2011
Gram Notes
Hi everyone,
Gram continues to be her happy, positive self. We brought in a hospital bed for her a few weeks ago, because she seemed to like sleeping in one when in respite care. She does the same thing here-when settling in for the night, or a nap, she smiles and smiles! When asked if her bed is comfy, she says, "OH, yes!" so there's an endorsement.
We may have zeroed in on a better sleep med, Risperidone. Gram can have one to four tabs each evening. Usually it is 2, so that is good that she is not needing the max dose all the time so far, and we have some options left there. This is about the 5th sleep med we have tried. Some have made her more agitated instead of calmer. We were told to watch for that, as it can happen often in older people. We have had some wild and very interesting nights, but they are much more predictable now.
Mom has had some recovery of the use of her feet/legs and her ability to stand and pivot to a new seat. For a couple of weeks now, she went back to how she was before Mary's birthday. That was the day when her legs suddenly did not support her at all. We have not been walking, but just being able to transfer means she can get the heck out of bed, use the bathroom, get a GOOD shower in the tub (with a shampoo!), get to the table, use her rocker that she loves, and so on. It is amazing how important this one ability can be.
The last 2 days, Mom has been very tired, however. She was not able to respond well to prompts of 'wake up", "let's go, Kokomo!" and all our other silly morning rituals. She just curled up more compactly in her blankets, and ignored me. Sometimes she would say, "No, no, NO!" and grab blankets back from me. I like that spirit.
When this happens, I work on getting some breakfast into her by serving it in bed. We got a hosp. table with the bed, so I put that over her, bring in the coffee, toast, yogurt, oatmeat---whatever we are having that day. Most days this inspires her to participate, but it did not work the last 2 days. She could have cared less about her morning cup of coffee, which she generally loves. I tried Ensure with a straw in the bottle, and that is the only thing that got a positive response. She was able to swallow that. I think the delivery method, using a straw and keeping the mouth sealed, helps her to swallow. She did not do well with yogurt, applesauce or other foods presented on a spoon. If she allowed this food into her mouth at all (sometimes she did not), it sort of just sat there. Choking risk became an issue, so I quit trying to spoon-feed her if she did not swallow initially
On Wednesday, I kept at it until we finally got up and dressed. However, Mom had difficulty staying awake in her chair. He head was down most of the time, and it took a lot of prompting to get her to eat. She wold sleep unless I made a lot of 1-to-1 interaction attempts It got to be so that I was pretty much standing on my head to get her to interact and eat. After a while, I asked if she wanted to lie down, and she said 'yes'. So that is what we did. Mom had an afternoon nap, and we got up again for the evening. She did eat a small dinner, and then went to bed for the night.
Strangely, she was pretty restless, so we worked our way up to 4 Risperidone tabs, her limit.
Then next day, Thurs., as I have mentioned, she was very sedate. This morning, although she is not up out of bed yet, she has showed signs of being more chipper and 'with it'. Yay!
I need tot wrap this up and get us going, but not before I wonder aloud again about the strangeness of ALZ. At school, we dealt with a lot of brain issues, traumatic brain injury, strokes, congenital brian abnormalities, cortical blindness. In my experience, brain functioning was fairly static, staying the same over time. We tried to access other parts of the brain for basic skills, by programming and repetition. With ALZ, functioning can seem lost, then magicallly reappear the next day. Our nurse, Niki, explains to me: "It's not a linear disease". That is my new mantra for the week.
.
Our trusted expert in geriatric/dementia care, our sister Kathy Fallon, says that there may come a time when Mom is just tired of eating, or just not interested any more. She also may forget to swallow, in which case, continuing to try to feed her will eventually induce choking.
I figure that she can choose to sleep or not, eat or not,, and so on. If you have other feelings on this, let's talk about it.
Alrighty then, talk to you later!
Love from the Home Office,
Annie and Gram
Gram continues to be her happy, positive self. We brought in a hospital bed for her a few weeks ago, because she seemed to like sleeping in one when in respite care. She does the same thing here-when settling in for the night, or a nap, she smiles and smiles! When asked if her bed is comfy, she says, "OH, yes!" so there's an endorsement.
We may have zeroed in on a better sleep med, Risperidone. Gram can have one to four tabs each evening. Usually it is 2, so that is good that she is not needing the max dose all the time so far, and we have some options left there. This is about the 5th sleep med we have tried. Some have made her more agitated instead of calmer. We were told to watch for that, as it can happen often in older people. We have had some wild and very interesting nights, but they are much more predictable now.
Mom has had some recovery of the use of her feet/legs and her ability to stand and pivot to a new seat. For a couple of weeks now, she went back to how she was before Mary's birthday. That was the day when her legs suddenly did not support her at all. We have not been walking, but just being able to transfer means she can get the heck out of bed, use the bathroom, get a GOOD shower in the tub (with a shampoo!), get to the table, use her rocker that she loves, and so on. It is amazing how important this one ability can be.
The last 2 days, Mom has been very tired, however. She was not able to respond well to prompts of 'wake up", "let's go, Kokomo!" and all our other silly morning rituals. She just curled up more compactly in her blankets, and ignored me. Sometimes she would say, "No, no, NO!" and grab blankets back from me. I like that spirit.
When this happens, I work on getting some breakfast into her by serving it in bed. We got a hosp. table with the bed, so I put that over her, bring in the coffee, toast, yogurt, oatmeat---whatever we are having that day. Most days this inspires her to participate, but it did not work the last 2 days. She could have cared less about her morning cup of coffee, which she generally loves. I tried Ensure with a straw in the bottle, and that is the only thing that got a positive response. She was able to swallow that. I think the delivery method, using a straw and keeping the mouth sealed, helps her to swallow. She did not do well with yogurt, applesauce or other foods presented on a spoon. If she allowed this food into her mouth at all (sometimes she did not), it sort of just sat there. Choking risk became an issue, so I quit trying to spoon-feed her if she did not swallow initially
On Wednesday, I kept at it until we finally got up and dressed. However, Mom had difficulty staying awake in her chair. He head was down most of the time, and it took a lot of prompting to get her to eat. She wold sleep unless I made a lot of 1-to-1 interaction attempts It got to be so that I was pretty much standing on my head to get her to interact and eat. After a while, I asked if she wanted to lie down, and she said 'yes'. So that is what we did. Mom had an afternoon nap, and we got up again for the evening. She did eat a small dinner, and then went to bed for the night.
Strangely, she was pretty restless, so we worked our way up to 4 Risperidone tabs, her limit.
Then next day, Thurs., as I have mentioned, she was very sedate. This morning, although she is not up out of bed yet, she has showed signs of being more chipper and 'with it'. Yay!
I need tot wrap this up and get us going, but not before I wonder aloud again about the strangeness of ALZ. At school, we dealt with a lot of brain issues, traumatic brain injury, strokes, congenital brian abnormalities, cortical blindness. In my experience, brain functioning was fairly static, staying the same over time. We tried to access other parts of the brain for basic skills, by programming and repetition. With ALZ, functioning can seem lost, then magicallly reappear the next day. Our nurse, Niki, explains to me: "It's not a linear disease". That is my new mantra for the week.
.
Our trusted expert in geriatric/dementia care, our sister Kathy Fallon, says that there may come a time when Mom is just tired of eating, or just not interested any more. She also may forget to swallow, in which case, continuing to try to feed her will eventually induce choking.
I figure that she can choose to sleep or not, eat or not,, and so on. If you have other feelings on this, let's talk about it.
Alrighty then, talk to you later!
Love from the Home Office,
Annie and Gram
Notes on Marfan's Syndrome in the Fallon Family
Tim and I am awaiting our follow up appts with the cardiologist after my tilt table test, and Tim's cardiac ablation. Double checking Tim's rhythm, and EKG, and we still need to find a treatment for me to take...meds to make me keep water in my body so I don't dehydrate which causes low blood volume, and low BP, passing out. Or steroids to help with this as well.
I have found out that my low BP can also be associated with Marfan's and I have read that as well. So I am betting I have Marfan's too, Just not as severe as Tim's. So, it is probably in our sibling group generation, and you all have 50:50 chance to have gotten it from dad. And 50:50 chance to have passed it on to your kids. It is autosomal dominant (thus the 50:50 chance), so you only need one defective gene, not two, and you either get it or you don't.
The taller and more slender people have more of a risk.
Some symptoms of Marfan's: heart issues (May be Di Gorge Syndrome, which they also think Tim has), sleep apnea, scoliosis, hernias, spontaneous collapsed lungs, detached retinas, hypermobility in joints, low BP/fainting, chest malformations, malformation of jaw, etc. There are more, but these are some of the main ones. Many people don't even know they have it (like me-as I age, they are popping up) until someone else in the family is found out to have it. Can be so subtle, or all the symptoms very noticible.
Just passing on the word, and for you to keep an eye out for these things. I am really not trying to be a downer...I just want you to have this information in the back of your mind, if anything arises with yourselves, or the next generation of the Fallon clan.
Love to all of you.
Colleen
I have found out that my low BP can also be associated with Marfan's and I have read that as well. So I am betting I have Marfan's too, Just not as severe as Tim's. So, it is probably in our sibling group generation, and you all have 50:50 chance to have gotten it from dad. And 50:50 chance to have passed it on to your kids. It is autosomal dominant (thus the 50:50 chance), so you only need one defective gene, not two, and you either get it or you don't.
The taller and more slender people have more of a risk.
Some symptoms of Marfan's: heart issues (May be Di Gorge Syndrome, which they also think Tim has), sleep apnea, scoliosis, hernias, spontaneous collapsed lungs, detached retinas, hypermobility in joints, low BP/fainting, chest malformations, malformation of jaw, etc. There are more, but these are some of the main ones. Many people don't even know they have it (like me-as I age, they are popping up) until someone else in the family is found out to have it. Can be so subtle, or all the symptoms very noticible.
Just passing on the word, and for you to keep an eye out for these things. I am really not trying to be a downer...I just want you to have this information in the back of your mind, if anything arises with yourselves, or the next generation of the Fallon clan.
Love to all of you.
Colleen
Saturday, April 2, 2011
Mary Parsley"s Progress
Just returned from nine days at Moms. Susan was there also for most of the time. Sharon arrived Friday, as did her daughter Laura (which was a surprise for Sharon and Mom). Also Michelle Lamberty arrived today for an overnight. We are planning to have someone with Mom all of the time for about a month. She sees her surgeon on April 27 (her birthday).
Mom is doing wonderfully well. Has been able to get herself ready for bed and then dressed the next morning for three days! She struggles some and it is hard to watch that but she wants to do it and is determined so mostly we let her do it. Yesterday she wanted to learn about all of her medications so she, Sharon and I did that.
She has not attempted any cooking, but that will come. Her appetite has improved the last couple of days, which is good.
Just a quick up date to say all is going well!
Stephena
Mom is doing wonderfully well. Has been able to get herself ready for bed and then dressed the next morning for three days! She struggles some and it is hard to watch that but she wants to do it and is determined so mostly we let her do it. Yesterday she wanted to learn about all of her medications so she, Sharon and I did that.
She has not attempted any cooking, but that will come. Her appetite has improved the last couple of days, which is good.
Just a quick up date to say all is going well!
Stephena
Gram Tries Respite Care
Hello everyone,
Our most recent Gram news is that she has just returned from 5 nights in respite care. Our hospice program gives us 5 nights every 90 days, and the place where they provide this is at Sanford Hospital.
We tried this for three reasons. I have been needing a break, as Gram has not been sleeping well for quite a while. Also got a call for a 4-day subbing stint at my favorite school, and I want to keep my foot in the door there. It would be too hard on Gram to go out 4 days in a row to DayBreak. There is a new symptom that is coming and going, too. We never know when Gram will have a day when her feet 'don't listen', and seem to be stuck to the floor. On days like that, it is too dangerous for us to try to get out the front door, with the three steps we have there.
Thirdly, we have been wondering if Gram would be comfortable at a facility.
We decided to try it, and bring her home if she got more anxious there.
It worked out well, though, and we ended up having Gram there for all 5 days. We took turns stopping in every evening, and found that she was SO comfortable and cared for. Staff sat with her for the first 3 nights to make sure she would not get up and hurt herself. She did not try to do this, probably because she seemed to like her bed. She just snuggled right in at night, with her big fleecy blanket from home, and did great for the most part.
There was one night when she got a little anxious, and so she was given her anti-anxiety med. That handled the problem. Overall, she required much less medication for restlessness/anxiety over the 5 days there than she had for the previous 5 days at home.
The staff at Sanford was so friendly and willing to accept our recommendations for ways to work with Gram. They evidently have hospice patients 'visiting' quite often, and they were all ready to meet Gram where she is and go from there. Now if I need a break later on, we will feel OK about having her there.
Hugs and Such,
Annie
Our most recent Gram news is that she has just returned from 5 nights in respite care. Our hospice program gives us 5 nights every 90 days, and the place where they provide this is at Sanford Hospital.
We tried this for three reasons. I have been needing a break, as Gram has not been sleeping well for quite a while. Also got a call for a 4-day subbing stint at my favorite school, and I want to keep my foot in the door there. It would be too hard on Gram to go out 4 days in a row to DayBreak. There is a new symptom that is coming and going, too. We never know when Gram will have a day when her feet 'don't listen', and seem to be stuck to the floor. On days like that, it is too dangerous for us to try to get out the front door, with the three steps we have there.
Thirdly, we have been wondering if Gram would be comfortable at a facility.
We decided to try it, and bring her home if she got more anxious there.
It worked out well, though, and we ended up having Gram there for all 5 days. We took turns stopping in every evening, and found that she was SO comfortable and cared for. Staff sat with her for the first 3 nights to make sure she would not get up and hurt herself. She did not try to do this, probably because she seemed to like her bed. She just snuggled right in at night, with her big fleecy blanket from home, and did great for the most part.
There was one night when she got a little anxious, and so she was given her anti-anxiety med. That handled the problem. Overall, she required much less medication for restlessness/anxiety over the 5 days there than she had for the previous 5 days at home.
The staff at Sanford was so friendly and willing to accept our recommendations for ways to work with Gram. They evidently have hospice patients 'visiting' quite often, and they were all ready to meet Gram where she is and go from there. Now if I need a break later on, we will feel OK about having her there.
Hugs and Such,
Annie
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