Thankfully, Mom was less depressed yesterday (Monday.)
She was in her usual chair with the television on when I got there at about ten thirty in the morning. First, I suggested we take a little walk around the half melted driveway, and we did that for a good twenty minutes, the sun shining and no breeze to speak of.
After Dad went out to run his errands, I asked her again if she would like me to read to her. I had asked her on Sunday, but she refused. Yesterday, however, she agreed to it, so I shut off the television, she slumped down in the chair with her eyes closed, and I took up part way through the Edith Wharton book she had given up on weeks ago.
The writing in the book is filled with fancy words and long sentences and many parenthesis and asides, but eventually, I got into a nice rhythm with my reading aloud, and occasionally Mom would blurt out the correct pronunciation or stop me to ask for a clarification on who was who. This was one of the calmest I have seen her in a while.. she closed her eyes (and even said to me, "excuse me for closing my eyes," and I replied that that was quite alright with me) and seemed to follow the stories. We even had a laugh or two, but she did say that it hurts her to laugh.
Dad returned home with a few things from the store, and I helped them prepare lunch. I went back home for a couple of hours, thinking I could get some things done for myself, but in reality, too spent to do much but laze about on the internet. Monday's are always a sleepy day for me.
Around two thirty in the afternoon, I went back over so Dad could take a walk. Mom asked if I could read to her some more (yeah!), so after I prepared a small pot of tea and gave her half a cookie, we settled in for some more reading aloud. She was once again enjoying herself when the phone rang, and I got up to answer it.
She overheard me take the message and the woman's name. I wasn't sure who it was, but Mom was convinced it was somebody calling about "Mom sitting," a very touchy subject at this point. Earlier in the day, Dad had spoken on the phone with a woman he was referred to by our neighbor who could possibly do some respite for Dad and me, and Mom overheard this and became very upset by the whole thing, yelling angrily and no doubt, howling.
After I took the message from the woman, I tried my best to distract her from the call, but she was clearly agitated again. I went back to reading for another twenty minutes or so until Dad came home. We told him that the woman called and would be calling back, and he said that she was a woman from an expensive respite house in a fancy town an hour away from here... Mom's sister had slipped a piece of paper with the info on it to Dad at Thanksgiving, so he followed up on it, only to recognize that it was not the right place for them.
However, this did not stop the woman from pushing for another "sale," and Dad, being polite, took her second phone call and went down stairs to speak with her. I wanted Mom to stay upstairs, but she insisted that she go down to listen in. Paranoia is at it's peak here. I walked down with her and asked her to be quite so Dad could politely tell the woman it wasn't right for them, and I managed to distract her for a few minutes in the downstairs bedroom ("Oh, look how nice and neat and clean your eldest son left the bedroom before he went home!" "Mom, where did you get this dresser, anyway?" "Where did this little mirror come from?" and she'd answer me, however...)
She went back out to where he was speaking on the phone at his desk and yelled out a few nasty things, and eventually he hung up and asked her not to do that... then he told her he needed to do something...
She went back upstairs, distraught, and I made Dad hush for a minute and wait, then we both came up. I gathered Mom in my arms, I had Dad come over and we hugged, the three of us, as I explained to Mom, again, that we are on her side, we are trying to take care of her, we won't do anything to hurt her, we won't do anything that she doesn't want.
Of course, I had to lie a little. We don't know what will happen in the future, and at the rate her mind and body are failing, we just can't say for sure what we will have to do. But at that moment, in the three way hug, and the reassurances from Dad and me, her agony and anxiety were again temporarily eased.
We three sat for a few more minutes, then we made a big salad together for their dinner, and finally I went home to my ever understanding boyfriend and my big glass of merlot.
Later that night, Dad called and asked if I would be willing to escort Mom to a ladies group dinner she was invited to this coming Friday night. The ladies know what's up, and she had a ball having a luncheon with them at one of their homes a few weeks ago.. despite the drive over being a nightmare for Dad. Once she was in the presence of her friends, however, she did have fun.
Naturally, I agreed to do it, as long as Mom would still be up for it by Friday. One can never know. Flexibility... I over heard Mom speaking in the background as Dad and I made the plans, and she seemed happy that I agreed to go with her.
Sigh. Which leads me to this morning, when I just went over to pick up their trash and recycling to make a dump run. Dad was in the basement at his computer, Mom was on the couch looking at a New Yorker magazine. This morning, we all lost power on our road for about two hours... Luckily, they had already had coffee and breakfast when it went off, and perhaps this was why Mom was still "reading" even though the electricity was back on.
She seems bound by worry today. It's Tuesday, and it's been six days since she's bathed. She refuses to change her clothes all week, and she dreads bath day with "Marena" (Maria), but she did admit that she does feel better after her bath and fresh clothes. She looks so frail, her hair is disheveled and needs to be trimmed and washed, she smells. And I can't do anything about it. She won't let me.
I am heading back over there shortly. I am going to try and read to her some more. Every word I write, every word I read, gets us closer to the end of this god awful, sad, sad story.
Tuesday, November 30, 2010
Monday, November 29, 2010
Sad Sunday
We got through the Thanksgiving holiday fairly well. Mom was pretty well engaged and despite the usual confusion about time and schedules, I was happy to see her hang back and let the rest of us handle the duties. She ate a good portion of the mid-day meal, and also ate much of the meals my sister prepared for them while she was there. The afternoon gathering over at Mom's sister's house, just down the road, was very active and busy, but Mom was comfortable enough there to have a nice time. She was especially excited when some of us pulled out some instruments and played a few songs.. she had a ball singing along, and it was very special to see that.
Earlier in the week, she had told my sister that she'd like to go to church on Sunday, so my sister was willing to stay an extra day in order to do that.. but by Saturday, Mom was so fried she changed her mind. Sister and big brother left for home on Saturday morning, not before washing and drying all the sheets and towels and leaving a list of left overs in the fridge for Dad. When I visited Saturday afternoon, Mom seemed somewhat content, but tired and, no doubt, relieved that the house was quite again. Same for Dad.
Sunday morning, I got over there only fifteen minutes after Dad left for church, about nine thirty a.m. She was slumped in her chair, with the television on, and napping with her chin on a pillow. She remarked that "I was early," and I could tell she was depressed, right off the bat.
It turned out to be a very depressing morning for me, too.
The whole morning she dozed off, with a frown on her face, her eyes closed, breathing heavy. I offered an idea for an activity, maybe I could help her write a few Christmas cards? No.
She complained that her back was hurting again. I offered her a Tylenol, but she wanted to wait until later.
I peeled and cut up a grapefruit, and she nibbled on a few pieces.
I reminded her it was her sister's birthday, and I managed to reach her by phone so that Mom could say happy birthday to her. "I love you!" she yelled in her distorted speaking voice.
I did the breakfast dishes, and noted two uneaten halves of cold toast on the cutting board. When Dad called around ten fifteen, he told me she didn't eat much for breakfast. Mom agreed to take a Tylenol for her back pain after Dad said it was okay. He told me to give her some more Ensure, as she only had juice with her small breakfast.
We walked around the dining room table ten times, five rounds in each direction, but I couldn't engage in her in any other exercises or stretches. She went back to her fitful dozing. She was angry that Dad went to church. There is a part of her that understands why he goes, but another part of her that feels like she is abandoned by him when he does.
Her mind is tired, her body is tired, she is caving in.
She ate a whole bowl of white bean and kale soup left over from my sister's batch, and a few crackers and grapes for lunch. A handful of trail mix with chocolate bits for dessert. After lunch, she opted for the couch.
I stayed until Dad came home, a little after one p.m.
I am hoping today she will feel better. I am hoping that yesterday was just a bad day.
She can no longer read or write, play piano or cook, change her clothes. Her sense of time is completely distorted. She does not want pity, and yet she craves comfort from this constant confusion. Her mind no longer belongs to her anymore, it is on it's own poisoned mission.
I just wish I could take away her pain and discomfort, but how does one soothe the brain?
 |
| Thanksgiving 2010 |
Earlier in the week, she had told my sister that she'd like to go to church on Sunday, so my sister was willing to stay an extra day in order to do that.. but by Saturday, Mom was so fried she changed her mind. Sister and big brother left for home on Saturday morning, not before washing and drying all the sheets and towels and leaving a list of left overs in the fridge for Dad. When I visited Saturday afternoon, Mom seemed somewhat content, but tired and, no doubt, relieved that the house was quite again. Same for Dad.
Sunday morning, I got over there only fifteen minutes after Dad left for church, about nine thirty a.m. She was slumped in her chair, with the television on, and napping with her chin on a pillow. She remarked that "I was early," and I could tell she was depressed, right off the bat.
It turned out to be a very depressing morning for me, too.
The whole morning she dozed off, with a frown on her face, her eyes closed, breathing heavy. I offered an idea for an activity, maybe I could help her write a few Christmas cards? No.
She complained that her back was hurting again. I offered her a Tylenol, but she wanted to wait until later.
I peeled and cut up a grapefruit, and she nibbled on a few pieces.
I reminded her it was her sister's birthday, and I managed to reach her by phone so that Mom could say happy birthday to her. "I love you!" she yelled in her distorted speaking voice.
I did the breakfast dishes, and noted two uneaten halves of cold toast on the cutting board. When Dad called around ten fifteen, he told me she didn't eat much for breakfast. Mom agreed to take a Tylenol for her back pain after Dad said it was okay. He told me to give her some more Ensure, as she only had juice with her small breakfast.
We walked around the dining room table ten times, five rounds in each direction, but I couldn't engage in her in any other exercises or stretches. She went back to her fitful dozing. She was angry that Dad went to church. There is a part of her that understands why he goes, but another part of her that feels like she is abandoned by him when he does.
Her mind is tired, her body is tired, she is caving in.
She ate a whole bowl of white bean and kale soup left over from my sister's batch, and a few crackers and grapes for lunch. A handful of trail mix with chocolate bits for dessert. After lunch, she opted for the couch.
I stayed until Dad came home, a little after one p.m.
I am hoping today she will feel better. I am hoping that yesterday was just a bad day.
She can no longer read or write, play piano or cook, change her clothes. Her sense of time is completely distorted. She does not want pity, and yet she craves comfort from this constant confusion. Her mind no longer belongs to her anymore, it is on it's own poisoned mission.
I just wish I could take away her pain and discomfort, but how does one soothe the brain?
Tuesday, November 16, 2010
It's Not All About You, Mom!
I've said that once or twice to her, earlier. It's really not the right thing to say, though... so I've got to bite my tongue and swallow my frustration and put on a smile. I did that today, and it worked. And all I was doing was trying to change her socks..
Sunday morning I went over as usual to stay with her while Dad went to choir rehearsal and church. Shortly after I went there, I casually asked her if she would like to change her clothes.. I should know better.. it creates tremendous stress for her, and immediately, she went into meltdown mode. Much like a toddler, really, wining and crying and wanting to run away. She had been wearing the same clothes since her last bath on Wednesday, and the pants she was wearing kept slipping down too low, showing her underpants, because she's lost so much weight and none of her clothes fit her like they used to. Foolishly, knowing I was wrong to do so, I tried to reason with her. But I know it's a losing battle, because my reason is no longer her reason. What makes sense to me makes no sense to her.
It's so hard to not be hurt by what she says sometimes. "I was so looking forward to you coming over today." "I just want this to be over with this so I won't be a burden to anyone anymore." "I just wish he would come home."
Thankfully, before it got any worse, I dropped it.. She had risen from her chair to escape the conflict.. I followed her, asked her to face me, and gave her a hug to soothe her. I told her I love her and told her it was all okay, we don't have to change her clothes, we will sit down and relax.
The rest of day went as usual, a walk and lunch, and when Dad called from church to check in, I heard her say to him, "She wanted to give me a bath, but I didn't want to, so I won that war!" I said aloud, "Not a bath, just change your clothes!" but she couldn't hear that, so "a bath" it was. When she passed the phone to me, I gave him the condensed and correct story (our reality), and Dad said, "So she's kind of ornery today, eh?" We have to find humor when we can.
Later, I went to my afternoon gig, but it was hard for me to shed the morning off. Luckily, I can talk to my friends there and they are sympathetic.
It's not all about you, Mom.
Monday, I only spent about an hour and a half with her, and she was her usual frenetic self. She's up, she's down, her mind is short. What can you do, really, but ride the wave of Mom?
Today, I spent a good four hours with her. I arrived shortly after her lunch, and after I suggested a few ideas for activities, I realized in reality, she wanted to nap. "Would you like to take a nap now?" "Yes," she said, so I helped her over to the couch and placed the blanket on her and she napped for nearly two hours. I felt a little guilty about letting her sleep so long, but at the same time, I was tired and my shoulder was bugging me and it was a relief to me to just sit and watch television and read while she slept. There really wasn't too much for me to do (I had cleaned the kitchen floor on Sunday, there was no laundry to speak of, really), so I just stayed calm and waited for the time to pass.
After she woke, I made a snack of peeled apple and cheese and crackers (though she only wanted the apple.. she is so finicky with food these days), then some tea, then we took a short walk around the house. Her socks got wet from the damp grass, and I told her we were going to change her socks. I was able to do it, but she still gave me grief. She worries about the laundry.. I remind her she doesn't need to worry about it because I am doing it (and Maria always puts in a load after her Wednesday morning bath time).
So today, when I realized she began to get stressed about changing her socks and laundry, I said, "I know it's hard, but do you trust me? Because, remember Mom, I am on your side." "Yes," she said, "I trust you." Sigh.
Dad came home, we helped put away the groceries he picked up from the market. He had met with his minister again. He shared that the minister gave him good advice. Mom asked, "What did you talk about?" And Dad replied, "About you, mostly." This freaked her out a little, but then they hugged and he was so sweet and understanding with her I nearly cried again.. I am so glad Dad has the minister to help him through this. Somehow, we are gaining tiny steps towards understanding and compassion and resolve about Mom suffering from this awful, horrible, mind robbing disease.
It is all about Mom now, but the ripples flow wide.
Sunday morning I went over as usual to stay with her while Dad went to choir rehearsal and church. Shortly after I went there, I casually asked her if she would like to change her clothes.. I should know better.. it creates tremendous stress for her, and immediately, she went into meltdown mode. Much like a toddler, really, wining and crying and wanting to run away. She had been wearing the same clothes since her last bath on Wednesday, and the pants she was wearing kept slipping down too low, showing her underpants, because she's lost so much weight and none of her clothes fit her like they used to. Foolishly, knowing I was wrong to do so, I tried to reason with her. But I know it's a losing battle, because my reason is no longer her reason. What makes sense to me makes no sense to her.
 |
| November 22, 2010 |
It's so hard to not be hurt by what she says sometimes. "I was so looking forward to you coming over today." "I just want this to be over with this so I won't be a burden to anyone anymore." "I just wish he would come home."
Thankfully, before it got any worse, I dropped it.. She had risen from her chair to escape the conflict.. I followed her, asked her to face me, and gave her a hug to soothe her. I told her I love her and told her it was all okay, we don't have to change her clothes, we will sit down and relax.
The rest of day went as usual, a walk and lunch, and when Dad called from church to check in, I heard her say to him, "She wanted to give me a bath, but I didn't want to, so I won that war!" I said aloud, "Not a bath, just change your clothes!" but she couldn't hear that, so "a bath" it was. When she passed the phone to me, I gave him the condensed and correct story (our reality), and Dad said, "So she's kind of ornery today, eh?" We have to find humor when we can.
Later, I went to my afternoon gig, but it was hard for me to shed the morning off. Luckily, I can talk to my friends there and they are sympathetic.
It's not all about you, Mom.
Monday, I only spent about an hour and a half with her, and she was her usual frenetic self. She's up, she's down, her mind is short. What can you do, really, but ride the wave of Mom?
Today, I spent a good four hours with her. I arrived shortly after her lunch, and after I suggested a few ideas for activities, I realized in reality, she wanted to nap. "Would you like to take a nap now?" "Yes," she said, so I helped her over to the couch and placed the blanket on her and she napped for nearly two hours. I felt a little guilty about letting her sleep so long, but at the same time, I was tired and my shoulder was bugging me and it was a relief to me to just sit and watch television and read while she slept. There really wasn't too much for me to do (I had cleaned the kitchen floor on Sunday, there was no laundry to speak of, really), so I just stayed calm and waited for the time to pass.
After she woke, I made a snack of peeled apple and cheese and crackers (though she only wanted the apple.. she is so finicky with food these days), then some tea, then we took a short walk around the house. Her socks got wet from the damp grass, and I told her we were going to change her socks. I was able to do it, but she still gave me grief. She worries about the laundry.. I remind her she doesn't need to worry about it because I am doing it (and Maria always puts in a load after her Wednesday morning bath time).
So today, when I realized she began to get stressed about changing her socks and laundry, I said, "I know it's hard, but do you trust me? Because, remember Mom, I am on your side." "Yes," she said, "I trust you." Sigh.
Dad came home, we helped put away the groceries he picked up from the market. He had met with his minister again. He shared that the minister gave him good advice. Mom asked, "What did you talk about?" And Dad replied, "About you, mostly." This freaked her out a little, but then they hugged and he was so sweet and understanding with her I nearly cried again.. I am so glad Dad has the minister to help him through this. Somehow, we are gaining tiny steps towards understanding and compassion and resolve about Mom suffering from this awful, horrible, mind robbing disease.
It is all about Mom now, but the ripples flow wide.
Wednesday, November 10, 2010
Fickle
I was thinking to myself, I wonder if Mom would like to play Scrabble? Of course, it would be casual and slow and non-competitive. I was doubtful, but she has seemed bored lately. I went over in the morning, but did not bring my Scrabble board.. instead, I ran down to the toy chest a grabbed a 500 piece jigsaw puzzle and a tube with a black and white lined drawing for coloring in with colored pencils.
Well, that didn't go over well at all. She wigged out and refused to even look. No problem, I said, I just thought you might like to try something different. I realize it's too hard, but I thought maybe, something, just an activity to focus on.
I realize focus is hard now though.
After she calmed down, Dad made a comment about the length of her fingernails. It's been brought up before and she's always resisted and claimed she liked them long. But yesterday? She marched right into her bathroom and got some nail clippers and a nail file. She let me clip her nails and together we filed them.
I made a big deal about being "her manicurist," and she seemed to get a little chuckle out of that. I asked her if she might allow Maria to give her "a pedicure" the next day (today), after her bath, and she agreed to that. I'm going over shortly and we will see if that really happens!
Later in the day, the minister from their church offered to drive over to their house to pick up some paperwork so that Dad wouldn't have to drive all the way to the church to drop them off. He has been excused from tonight's monthly board meeting, which is a big relief to Mom (and a night off for me!)
Well, we agreed to have me meet the minister, and Mom called when he arrived around three fifteen in the afternoon. Well, if you didn't know anything about Mom, you would have never known she was afflicted with this disease! Lucid and chatty..
You just never know with this condition. Fickle.
I am heading over there shortly to spend a good chunk of the day with her while Dad goes to a doctors appointment in the big city. I am bringing a photo album from the late sixties / early seventies. I plan on trying to get in some housecleaning around Dad's desk area. It's a big dust bowl down there!
Well, that didn't go over well at all. She wigged out and refused to even look. No problem, I said, I just thought you might like to try something different. I realize it's too hard, but I thought maybe, something, just an activity to focus on.
I realize focus is hard now though.
After she calmed down, Dad made a comment about the length of her fingernails. It's been brought up before and she's always resisted and claimed she liked them long. But yesterday? She marched right into her bathroom and got some nail clippers and a nail file. She let me clip her nails and together we filed them.
I made a big deal about being "her manicurist," and she seemed to get a little chuckle out of that. I asked her if she might allow Maria to give her "a pedicure" the next day (today), after her bath, and she agreed to that. I'm going over shortly and we will see if that really happens!
Later in the day, the minister from their church offered to drive over to their house to pick up some paperwork so that Dad wouldn't have to drive all the way to the church to drop them off. He has been excused from tonight's monthly board meeting, which is a big relief to Mom (and a night off for me!)
Well, we agreed to have me meet the minister, and Mom called when he arrived around three fifteen in the afternoon. Well, if you didn't know anything about Mom, you would have never known she was afflicted with this disease! Lucid and chatty..
You just never know with this condition. Fickle.
I am heading over there shortly to spend a good chunk of the day with her while Dad goes to a doctors appointment in the big city. I am bringing a photo album from the late sixties / early seventies. I plan on trying to get in some housecleaning around Dad's desk area. It's a big dust bowl down there!
Tuesday, November 9, 2010
The 36-Hour Day
My new drummer friend, who lost his wife to Alzheimer Disease not too long ago, loaned me (or probably gave me.. ) his copy of The 36-Hour Day by Nancy L. Mace, M.A. and Peter V. Rabins, M.D., M.P.H.
I am half way through the relevant parts of this care-givers bible, and here are a few key things I am gathering from my reading and personal experience.
Daily routine. I think Dad is doing a wonderful job with this, especially with the meals and snacks and medications. And even though Mom is only getting bathed once a week, at least it is falling into a set time once a week.
Reassurance. This is were I think I'm doing well, at least on the days when I'm not fried. Patience is the key here.. with the repeated questions of "what time is it?" and her restlessness, getting up and down.. If she decides suddenly, just after getting settled back down into her chair with her throw over her legs, that she now wants to get up and look one more time at the dinner Dad brought home from the market, even though she was already shown or told only ten minutes earlier, just go with it. These behaviors are a test to your patience, and that's why I am learning first hand how vital it is to be well rested and calm around Mom.
Flexibility. You just can't expect Mom to stick with one topic of conversation for too long. If she asks about something, keep your answers short. Too many long sentences, with too much back story, is too difficult for her injured brain to follow. Positive, concise answers are best, and let her flow into whatever subject she wants to go to. If she starts to get dark or sad or negative, gently guide her out of that by changing the subject to something positive.
We lost the power here on our road late Sunday night and didn't get it back until Monday afternoon. These are the kinds of things that terrify Mom, but I think she handled it all pretty well. Dad stopped by in the car Monday morning, and he had Mom with him. I decided at the last minute to jump in with them and take the trip downtown, just so that Mom wouldn't have to be in the car alone for too long while he ran his errands. I'm glad I did.
One of the strange things happening is sometimes Mom has trouble controlling the volume of her speaking voice. For the last year, we've all noticed how her speaking voice has changed to a very soft and feeble tone. Now, when she get a little upset, or seems to be struggling to find the right words, she might yell the words out. It's almost like she's fighting to get it out, and to yell makes it easier. Other times, it's simply that she is upset, mad at Dad or fighting with her frustrations. Imagine how angry you would get if you couldn't say the words you wanted to say, to convey your true feelings. It's like this for Mom, and if she has to raise the volume of her voice to "spit it out," so be it.
So, the last few days, we've noticed restlessness. Probably due to the poor weather the last few days, and perhaps she is getting bored. It's getting difficult for her to read now.. She loses track of the story and forgets where she is or what happened. The same old daytime television shows are getting boring to her, as well. Too much HGTV! At night time, she and Dad watch a few programs together that they both enjoy.
She has also commented to us about vivid dreaming lately. This is probably due to the increased dosages of the Memantine (Namenda.) Her neurologist, Dr. D., did mention this as a possible side effect to this drug.
I could be wrong, but I feel like the drug is helping. The other night she made their chicken dinner. Yesterday she dried the dishes I washed and put them all away in the right places. Yesterday afternoon, she wanted to take a walk (I didn't have to ask her), and she pushed for four laps up and down the driveway. She even remembered an old marching chant as we walked ("Left, left, I left my job..." etc.)
I thought that was a nice little win.
So, we have our good days and our bad days. It really comes down to moments now.. good moments, bad moments. It some ways, her brain's losing ability to keep track of time might be a small blessing, in that she can't really measure how much the disease is taking away from her final years of life.
I am half way through the relevant parts of this care-givers bible, and here are a few key things I am gathering from my reading and personal experience.
Daily routine. I think Dad is doing a wonderful job with this, especially with the meals and snacks and medications. And even though Mom is only getting bathed once a week, at least it is falling into a set time once a week.
Reassurance. This is were I think I'm doing well, at least on the days when I'm not fried. Patience is the key here.. with the repeated questions of "what time is it?" and her restlessness, getting up and down.. If she decides suddenly, just after getting settled back down into her chair with her throw over her legs, that she now wants to get up and look one more time at the dinner Dad brought home from the market, even though she was already shown or told only ten minutes earlier, just go with it. These behaviors are a test to your patience, and that's why I am learning first hand how vital it is to be well rested and calm around Mom.
Flexibility. You just can't expect Mom to stick with one topic of conversation for too long. If she asks about something, keep your answers short. Too many long sentences, with too much back story, is too difficult for her injured brain to follow. Positive, concise answers are best, and let her flow into whatever subject she wants to go to. If she starts to get dark or sad or negative, gently guide her out of that by changing the subject to something positive.
We lost the power here on our road late Sunday night and didn't get it back until Monday afternoon. These are the kinds of things that terrify Mom, but I think she handled it all pretty well. Dad stopped by in the car Monday morning, and he had Mom with him. I decided at the last minute to jump in with them and take the trip downtown, just so that Mom wouldn't have to be in the car alone for too long while he ran his errands. I'm glad I did.
One of the strange things happening is sometimes Mom has trouble controlling the volume of her speaking voice. For the last year, we've all noticed how her speaking voice has changed to a very soft and feeble tone. Now, when she get a little upset, or seems to be struggling to find the right words, she might yell the words out. It's almost like she's fighting to get it out, and to yell makes it easier. Other times, it's simply that she is upset, mad at Dad or fighting with her frustrations. Imagine how angry you would get if you couldn't say the words you wanted to say, to convey your true feelings. It's like this for Mom, and if she has to raise the volume of her voice to "spit it out," so be it.
So, the last few days, we've noticed restlessness. Probably due to the poor weather the last few days, and perhaps she is getting bored. It's getting difficult for her to read now.. She loses track of the story and forgets where she is or what happened. The same old daytime television shows are getting boring to her, as well. Too much HGTV! At night time, she and Dad watch a few programs together that they both enjoy.
She has also commented to us about vivid dreaming lately. This is probably due to the increased dosages of the Memantine (Namenda.) Her neurologist, Dr. D., did mention this as a possible side effect to this drug.
I could be wrong, but I feel like the drug is helping. The other night she made their chicken dinner. Yesterday she dried the dishes I washed and put them all away in the right places. Yesterday afternoon, she wanted to take a walk (I didn't have to ask her), and she pushed for four laps up and down the driveway. She even remembered an old marching chant as we walked ("Left, left, I left my job..." etc.)
I thought that was a nice little win.
So, we have our good days and our bad days. It really comes down to moments now.. good moments, bad moments. It some ways, her brain's losing ability to keep track of time might be a small blessing, in that she can't really measure how much the disease is taking away from her final years of life.
Wednesday, November 3, 2010
Random Worries For Today
I look back at photos of Mom from only 6 months ago, and the change from today is so dramatic. It's so hard to believe how much this disease has snowballed. Though we may level off again for awhile.. who knows. There is no set timetable, they say.
So much to worry about on a regular basis. And not just about her health and safety, but his, as well.
I wish I could get her to exercise more. And eat more. And bathe more. She gets so easily upset.. and she and Dad push each others buttons so easily, too, creating friction. Friction they've always had, but for me, I see it different than Dad. I just feel it's so important to keep her from blowing up. Of course, her spat's don't last too long, but still, it can't be good for her.
At least she sleeps well and often takes little naps.
I worry about Thanksgiving. All the commotion and noise and confusion. She doesn't really want it. Yet, it is important for her to continue to participate and be involved. Once or twice she's said to me, "I can't wait until I get over 'this' so I can get back to work in the garden." Then other times she hangs her head in defeat and says aloud something like she just wants it all to be over.
But these moments pass quickly, too.
Her attention span is very short, so I try to keep her flowing when she wants to be active in movement or speaking. Many times, out of the blue, she'll bring up a memory or individual from the past. The other day she remembered the name of something that we had been talking about the day before.
I saw our neighbor yesterday at voting and she told me she was surprised Mom remembered who she was and her name when Dad took her in to vote earlier that day. AD isn't just about forgetting things, though. It's so much more than that. It can fool most people who are only casual friends.
Mom has trouble getting dressed... buttoning and unbuttoning. Putting on gloves.. her body is caving and stiffening. Her skin is dry.
Oh dear. Well, today she is getting all cleaned up with Maria. She'll feel better after that.
So much to worry about on a regular basis. And not just about her health and safety, but his, as well.
I wish I could get her to exercise more. And eat more. And bathe more. She gets so easily upset.. and she and Dad push each others buttons so easily, too, creating friction. Friction they've always had, but for me, I see it different than Dad. I just feel it's so important to keep her from blowing up. Of course, her spat's don't last too long, but still, it can't be good for her.
At least she sleeps well and often takes little naps.
I worry about Thanksgiving. All the commotion and noise and confusion. She doesn't really want it. Yet, it is important for her to continue to participate and be involved. Once or twice she's said to me, "I can't wait until I get over 'this' so I can get back to work in the garden." Then other times she hangs her head in defeat and says aloud something like she just wants it all to be over.
But these moments pass quickly, too.
Her attention span is very short, so I try to keep her flowing when she wants to be active in movement or speaking. Many times, out of the blue, she'll bring up a memory or individual from the past. The other day she remembered the name of something that we had been talking about the day before.
I saw our neighbor yesterday at voting and she told me she was surprised Mom remembered who she was and her name when Dad took her in to vote earlier that day. AD isn't just about forgetting things, though. It's so much more than that. It can fool most people who are only casual friends.
Mom has trouble getting dressed... buttoning and unbuttoning. Putting on gloves.. her body is caving and stiffening. Her skin is dry.
Oh dear. Well, today she is getting all cleaned up with Maria. She'll feel better after that.
Monday, November 1, 2010
Last Few Days
The last few days have been fairly steady, so I haven't felt the need to write too much.
However, just when you want to believe maybe things are better, maybe the medication is working.. little episodes like what just happened a little while ago remind you that this disease takes no prisoners, makes no excuses, spares no one.
Thursday, Friday and Saturday mostly seemed alright. Mom seems to complain less about her back pain (though sometimes it'll come back.. perhaps from all the sitting.. ) We try to get her up and moving, but her attention span is so short. She always wants to go back and sit down.. though she'll go to do that and start to read, but get distracted and want to get up. It's hard.
I've started a new tea time ritual, which she likes. Usually around three p.m. Just before the sun starts to go down and "sundowners" sneaks in. Saturday afternoon, I went over there around two- thirty, specifically to try and get Mom to change her clothes before she and Dad went up to Auntie's for dinner. We managed to do that without too much fuss.. though, it's never easy. She felt better though, and picked out a fresh, matching bandana to go with her top. They spent less than two hours over there, and the report was that it went well. I suggested they ask Auntie if they could bring home any leftovers they couldn't finish, and so they did and were able to supplement that for their Sunday night dinner.
Sunday morning, I got over there a little before ten a.m., and we spent the first hour together quietly reading. Eventually, she got hungry, so I asked her what she wanted to eat.. She finally agreed to let me make her a grilled cheese sandwich. She ate half of that, plus some chips and a cut up apple and a glass of V8 juice. I bolted out of there at a little after one p.m. to get ready for my gig.
At my gig later that day, I got disheartened again when I had a conversation with the new drummer we've been using for the last four weeks. We all knew that he had just lost his wife only two months ago.. I thought it was cancer, but when I told him about what I was going through with Mom, he told me that was how his wife died. We both shed some tears as he shared a few of the sad details.. and he warned me, gently, that it was only going to get worse. Which I know, but to hear it from him, still painfully fresh in his soul.. so sad. In his wife's case, it was the disease that made her weak, and she, too, suffered from compression fractures, as well as urinary tract infections.. because she wasn't wiping properly.. I guess this is common. Something Dad and I need to be on watch for. The physical health conditions sped up and compressed the AD. Sigh. That night, after I got home, I resolved to be even more pro-active with Mom and with relief for Dad..
Though Monday comes around and as I've said before, I'm always a bit off on Monday.. Luckily, Dad called in the morning to let me know he and Mom were going down to the town hall to vote. Not long after that, he called again to say that the town hall was closed on Monday, and though Mom had said earlier she would go with him down town to food shop, she changed her mind and didn't want to go. But she was fine with being alone while he was gone, so I was able to shower and unload gear and get my own shopping done.
When I went over at two-thirty, things were calm. She was reading, then she suggested tea, so we three sat and had tea (no television on.) While I was at the market earlier, I ran into their choir director, and she naturally was very concerned and eventually asked if she could come visit Mom. I said, that might be nice, and to call Dad. Well, by the time I got over there, she had called Dad but Mom flat out refused a visit. Sigh.
Later, after tea and a short nap on the couch for Mom, when the subject of a visit from church people came up again, she got really upset, so much that she got up out of her chair and started to leave.. she walked outside (I was holding her hand the whole time), and she yelled at Dad about this and that. (One thing she said was actually pretty funny.. "Well, I've had to listen to you fart and poop for all these years so...!") She doesn't want to be patronized. She doesn't want to be "an experiment." She just wants to be left alone. She is just happy to have Dad and me tend to her.
We calmed her down enough to get her back in her chair, and she said she was hungry, so Dad went to get her a cracker and cheese. I was getting ready to leave and was in the kitchen and asked Dad about his plans for the week... and sure enough, this upset her some more.. even when she's in the other room, she listens and gets upset. Dad and I need to just email our plans, I guess.
So, you just don't know. This disease is ugly and sad and we can't blame Mom for her behaviors. We just need to remain calm and smile (whenever she gets upset, I say, okay now, let's not be mad, think happy thoughts, let's smile.. anything to get the sad frown and furrowed brows off her face.)
We discussed Meals On Wheels again tonight, and the option of more help from the church folks. Mom is dead set against a lot of stuff, but we might just have to do it anyway. Dad's trying his best, and I don't want him to get anymore burnt out than he is.
However, just when you want to believe maybe things are better, maybe the medication is working.. little episodes like what just happened a little while ago remind you that this disease takes no prisoners, makes no excuses, spares no one.
Thursday, Friday and Saturday mostly seemed alright. Mom seems to complain less about her back pain (though sometimes it'll come back.. perhaps from all the sitting.. ) We try to get her up and moving, but her attention span is so short. She always wants to go back and sit down.. though she'll go to do that and start to read, but get distracted and want to get up. It's hard.
I've started a new tea time ritual, which she likes. Usually around three p.m. Just before the sun starts to go down and "sundowners" sneaks in. Saturday afternoon, I went over there around two- thirty, specifically to try and get Mom to change her clothes before she and Dad went up to Auntie's for dinner. We managed to do that without too much fuss.. though, it's never easy. She felt better though, and picked out a fresh, matching bandana to go with her top. They spent less than two hours over there, and the report was that it went well. I suggested they ask Auntie if they could bring home any leftovers they couldn't finish, and so they did and were able to supplement that for their Sunday night dinner.
Sunday morning, I got over there a little before ten a.m., and we spent the first hour together quietly reading. Eventually, she got hungry, so I asked her what she wanted to eat.. She finally agreed to let me make her a grilled cheese sandwich. She ate half of that, plus some chips and a cut up apple and a glass of V8 juice. I bolted out of there at a little after one p.m. to get ready for my gig.
At my gig later that day, I got disheartened again when I had a conversation with the new drummer we've been using for the last four weeks. We all knew that he had just lost his wife only two months ago.. I thought it was cancer, but when I told him about what I was going through with Mom, he told me that was how his wife died. We both shed some tears as he shared a few of the sad details.. and he warned me, gently, that it was only going to get worse. Which I know, but to hear it from him, still painfully fresh in his soul.. so sad. In his wife's case, it was the disease that made her weak, and she, too, suffered from compression fractures, as well as urinary tract infections.. because she wasn't wiping properly.. I guess this is common. Something Dad and I need to be on watch for. The physical health conditions sped up and compressed the AD. Sigh. That night, after I got home, I resolved to be even more pro-active with Mom and with relief for Dad..
Though Monday comes around and as I've said before, I'm always a bit off on Monday.. Luckily, Dad called in the morning to let me know he and Mom were going down to the town hall to vote. Not long after that, he called again to say that the town hall was closed on Monday, and though Mom had said earlier she would go with him down town to food shop, she changed her mind and didn't want to go. But she was fine with being alone while he was gone, so I was able to shower and unload gear and get my own shopping done.
When I went over at two-thirty, things were calm. She was reading, then she suggested tea, so we three sat and had tea (no television on.) While I was at the market earlier, I ran into their choir director, and she naturally was very concerned and eventually asked if she could come visit Mom. I said, that might be nice, and to call Dad. Well, by the time I got over there, she had called Dad but Mom flat out refused a visit. Sigh.
Later, after tea and a short nap on the couch for Mom, when the subject of a visit from church people came up again, she got really upset, so much that she got up out of her chair and started to leave.. she walked outside (I was holding her hand the whole time), and she yelled at Dad about this and that. (One thing she said was actually pretty funny.. "Well, I've had to listen to you fart and poop for all these years so...!") She doesn't want to be patronized. She doesn't want to be "an experiment." She just wants to be left alone. She is just happy to have Dad and me tend to her.
We calmed her down enough to get her back in her chair, and she said she was hungry, so Dad went to get her a cracker and cheese. I was getting ready to leave and was in the kitchen and asked Dad about his plans for the week... and sure enough, this upset her some more.. even when she's in the other room, she listens and gets upset. Dad and I need to just email our plans, I guess.
So, you just don't know. This disease is ugly and sad and we can't blame Mom for her behaviors. We just need to remain calm and smile (whenever she gets upset, I say, okay now, let's not be mad, think happy thoughts, let's smile.. anything to get the sad frown and furrowed brows off her face.)
We discussed Meals On Wheels again tonight, and the option of more help from the church folks. Mom is dead set against a lot of stuff, but we might just have to do it anyway. Dad's trying his best, and I don't want him to get anymore burnt out than he is.
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