Wednesday night I went to stay with Mom so Dad could go to a concert. He had purchased the tickets a while ago, not realizing at that time that Mom wouldn't want to / be able to go, but he still wanted to make an appearance, so we compromised and he decided that he'd leave half way through the show.
Surprisingly, Mom handled the whole thing pretty well. She had had a bath in the morning, and was all fresh in clean clothes and clean hair. I was too tired myself to do much other than just sit with her (which suits her fine), and we watched a couple of episodes of "Two And A Half Men." I turned her on to the silly sitcom and she seems to enjoy it!
She had been sitting in the same chair a lot lately, and she complained a little about her sides aching a bit. Maria thought it might be time to give the heating pad habit a rest, and Mom didn't seem to mind. I gave her a gentle back rub, then asked if she'd like to try laying down on the couch for a change. She was up for that, and after a little bit of negotiating, she got settled onto the couch and liked the change of view. She even kicked off her shoes.
She asked me to bring her a small bowl of trail mix (it has chocolate bits in it.. she's got a mad sweet tooth these days), and she ate the entire bowl! I switched the channel over at seven thirty p.m. to the basketball game.. She used to be a big fan but hasn't watched baseball or football or basketball games in a while now. So, I thought this was promising. She switched to a new location (the couch) and watched something on television she hadn't watched in a long time (the basketball game.)
Though she checked her watch a few times and asked me what time it was a few times, she wasn't too stressed when I explained to her how long Dad had been gone, and what he was probably doing at that particular moment. Like, well it's seven p.m. now, so he just got there and is settling into a seat. The concert starts in half an hour. Mom would roll her eyes, then at seven thirty five p.m. I said, well the concert has just started.. etc.
Dad called around eight thirty five p.m. and said he was sneaking out and on his way home. He got back a little before nine p.m., and sure enough, shortly after he sat down to share his experience, we looked over at Mom and she had her eyes closed. We had a little giggle over that, then Mom woke up and said she wanted to go to bed. I left them to themselves and their nightly rituals, which now include Dad reading aloud from a book to her. So sweet.
Today the sun is finally shining and I hope to get over there after lunch so we can go out for a walk. I wonder if the new drug is having a positive effect?
Thursday, October 28, 2010
Tuesday, October 26, 2010
Tuesday Afternoon
Got next door around one ten today. Dad needed to get to a test and a meeting, home about five. The temp was mild, a little over sixty, and the sun dominated over a light cover of white clouds. Mom was in front of the television. Dad said goodbye and took off, and shortly after that, Mom and I went out for a walk. Up the driveway, up the road and back down to the veggie garden out back. Though she seemed to enjoy being outside, even remarking when we passed her side flower garden that she "couldn't wait to get better so I can do some work in the garden," much too quickly she needed to get back inside..
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| October 27, 2010 |
Back in her the chair, I sat with her a minute and told her I'd like to do a little dusting, like I had mentioned yesterday. She agreed to that, and I shut off the television and she picked up her book. I spent about forty-five minutes dusting and vacuuming around the master bedroom, but I can't spend too much time doing stuff because she gets mildly distressed. So, I went back and sat with her awhile.
I put on some water for tea a little before three, and we sat and had tea over a couple of HGTV programs. Then I asked if she would like to show me how to prepare the ground turkey into her famous turkey balls, and she agreed. I figured this would be a good way to distract her from the time without Dad. It was a struggle for her, but together we managed to put together a plate of prepped turkey balls. Then she got tired and went back to her chair, and I threw together a salad.. and tackled the pantry. Threw away a bunch of outdated foods, and cleaned and sorted a bit. When I looked out at Mom, she had her head bowed in her hand. When I came back out, I asked her if she was sad, but she said, no, she was just trying to visualize what the sounds where that I was making in the kitchen. It's hard for her brain to match the sounds to the images... It's all jumbled in her mind.
Dad called around four while we were prepping the meat, and he got back at five. Mom and I gave him a big hello and welcome home. I got the meal started, then left.
Tomorrow will no doubt prove to be a tough day for Mom. Maria comes in the morning to help Mom bathe.. though Mom likes Maria, it's always stressful for her. I can't blame her. Just this afternoon, when I suggested she might want to change into a another clean shirt (from the big change incident two days ago), she instantly slipped into whiney mode and so I dropped that right away. No sense getting her all worked up, got to pick the battles.
Later tomorrow night, Dad is going to a concert.. tickets he purchased awhile ago before we realized Mom was so affected by this horrible disease. He'd like to go anyway, I'd like him to go, so I will stay with Mom, and she will not be happy. All I can do is sit with her, assure her, and try and distract her from her anxiety.
We will see how it goes.
Monday, October 25, 2010
Monday Afternoon
Monday is always a draggy day for me, because I've been so busy on Saturday night and Sunday afternoon with my music. I sensed Dad probably wouldn't need me until later in the day, so I got cracking on my chores in the morning, unloading the equipment and doing the dishes, showering and dressing for my day. Around 11:30 a.m., Don answered the phone and it was Mom. She told him she was going down town with Dad to accompany him on his shopping, so I didn't need to go over until later. Great, I thought, I'll get a chance to run down town and do my shopping and errands, then I could go over in the afternoon and give Dad some time to do his thing.
So, I took off around noon, and didn't get back until a little before three. When I got back, Don told me Dad had called about half and hour earlier to say that they had to cut their trip short, because Mom just got too restless and wanted to go home. So, he would have to go back out so he could do his grocery shopping.
When I got over there about three p.m., Mom was clearly feeling some anxiety. Her face showed worry.. I held her hands and sat with her while Dad talked on the phone with the Dr. N.'s assistant about one his issues (vitamin thing) and about Mom's lessening back pain. He and I tried to make plans for tomorrow, and this was not easy with Mom's anxiety and questions. Once Dad left with a grocery list in hand, Mom asked if I would like to watch a program with her (the t.v. was off when I got there.) I agreed to that, being a little worn myself, so we moved over to the t.v. chair and then I asked her if she would like some tea. She liked that idea, so I went to the kitchen to heat up the water and prepare the teapot. I decided to empty the kitchen trash, and Mom offered to help by opening up the door to the garage. I feel like when ever she wants to do something, it's therapeutic to say yes (within reason.) So, she opened up the door, and this makes her feel useful.
We sat for a bit and had tea. I told her a little about my gigs over the weekend, and we chatted lightly about the next few days plans.. though, you just can't go too much into anything.. it stresses her out too much. I told her I thought I'd like to do a little dusting around their bed tomorrow.
When Dad got back, we helped him unpack the groceries, then we went back to the living room while Dad did a little business at his computer. Around four p.m., I had Mom come into the kitchen and help prep dinner. She wanted to peel the yam, but it was too hard, so I had her peel and chop the garlic. She decided she wanted a little glass of wine.. then she wanted her radio program on. I thought this was great.. like old times. Of course, once the garlic was chopped, things got too much for her again, so she went back to her chair and her book while I helped Dad get their dinner of mashed yams, steamed summer squash and slow-sauteed hake fish going. Dad was very gracious with my cooking tips and ideas.
Tomorrow, Dad needs to go get his monthly blood test done, and he has set up a meeting with his minister. He was going to attend a political meeting being held in his church basement from 4:30-6:00 p.m. that evening, but he called me a little while ago and has decided to skip that, realizing that they'd probably want him to volunteer for more work. I assured him it's okay if he skips out on this, as much as it kills him, because he's done a lot over the years, and he deserves a break, especially considering what we are going through with caring for Mom.
Plus, this way, he'll be able to come home and have dinner with Mom. I hope to get Mom back in the kitchen tomorrow afternoon before he comes home so together we can prep their dinner meal.
Weather was overcast and drizzly all day. Her anxiety level was mild to moderate. I'm seeing a pattern here.
So, I took off around noon, and didn't get back until a little before three. When I got back, Don told me Dad had called about half and hour earlier to say that they had to cut their trip short, because Mom just got too restless and wanted to go home. So, he would have to go back out so he could do his grocery shopping.
When I got over there about three p.m., Mom was clearly feeling some anxiety. Her face showed worry.. I held her hands and sat with her while Dad talked on the phone with the Dr. N.'s assistant about one his issues (vitamin thing) and about Mom's lessening back pain. He and I tried to make plans for tomorrow, and this was not easy with Mom's anxiety and questions. Once Dad left with a grocery list in hand, Mom asked if I would like to watch a program with her (the t.v. was off when I got there.) I agreed to that, being a little worn myself, so we moved over to the t.v. chair and then I asked her if she would like some tea. She liked that idea, so I went to the kitchen to heat up the water and prepare the teapot. I decided to empty the kitchen trash, and Mom offered to help by opening up the door to the garage. I feel like when ever she wants to do something, it's therapeutic to say yes (within reason.) So, she opened up the door, and this makes her feel useful.
We sat for a bit and had tea. I told her a little about my gigs over the weekend, and we chatted lightly about the next few days plans.. though, you just can't go too much into anything.. it stresses her out too much. I told her I thought I'd like to do a little dusting around their bed tomorrow.
When Dad got back, we helped him unpack the groceries, then we went back to the living room while Dad did a little business at his computer. Around four p.m., I had Mom come into the kitchen and help prep dinner. She wanted to peel the yam, but it was too hard, so I had her peel and chop the garlic. She decided she wanted a little glass of wine.. then she wanted her radio program on. I thought this was great.. like old times. Of course, once the garlic was chopped, things got too much for her again, so she went back to her chair and her book while I helped Dad get their dinner of mashed yams, steamed summer squash and slow-sauteed hake fish going. Dad was very gracious with my cooking tips and ideas.
Tomorrow, Dad needs to go get his monthly blood test done, and he has set up a meeting with his minister. He was going to attend a political meeting being held in his church basement from 4:30-6:00 p.m. that evening, but he called me a little while ago and has decided to skip that, realizing that they'd probably want him to volunteer for more work. I assured him it's okay if he skips out on this, as much as it kills him, because he's done a lot over the years, and he deserves a break, especially considering what we are going through with caring for Mom.
Plus, this way, he'll be able to come home and have dinner with Mom. I hope to get Mom back in the kitchen tomorrow afternoon before he comes home so together we can prep their dinner meal.
Weather was overcast and drizzly all day. Her anxiety level was mild to moderate. I'm seeing a pattern here.
The Weekend
Saturday was another fairly calm day for Mom. I believe it was cool but sunny. We took a longer walk outside then the last two days. This time, when she pointed out a plant, it was "Goat's Whiskers" instead of "Goat's Beard." She ate fairly well. I had to leave early for a gig 2 hours away. Dad made a good supper with chicken tenders and veggies, he said it turned out well.
Sunday was a bit tricky. We all three agreed that I would come over at 9:30 a.m., leaving Mom alone for a half hour. Wouldn't you know it, I overslept on Sunday! Never happens. Woke up at 9:45! Ran downstairs, put on coffee, fed the cats and zipped over there, walking in the door just before 10 a.m. She hardly realized I was late, engrossed in a television show on HGTV. That was a relief (later she admitted she was confused if it was me or Maria coming over).. I settled in and casually mentioned that my friend was stopping by to say hello to me on her way back home to Boston, and that she wanted to come and say a quick hello to Mom. This casual news upset Mom quite a bit at first.. I had to gently calm her down and eventually she agreed to meet her.
The next battle came a little while later when I realized Mom was shaking and cold, despite the heat being jacked up, the heating pad at her back and a throw over her legs and torso. I suggested we change into clean clothes from head to toe.. oh boy, she did not like that idea one bit, and she bursted out in frustration. I remained calm and soothing, and though it was a battle and so painful to see her react that way, I managed to get her into completely new clothes, even fresh socks. It was not pretty though.. she fought me the whole way. It's unbelievable to witness this behavior, but it really is the symptoms of the disease. Heartbreaking.
I had her put on some deodorant and run a comb through her hair and she chose a fresh bandana that matched her fresh outfit, and sure enough, once settled back down in the chair, she felt better and warmer. I managed to rub some moisturizer on her dry feet and toes before we put on the fresh socks, and I also gently applied some moisturizer on her face and hands.
We waited for Dad to come home from church. I gave her a snack of a bowl of grapes, and she ate them all down. I started lunch for her, but she wanted to wait for Dad, so I set it up so they could eat together as soon as he came back. He was home by 1 p.m., I rushed out of there to get ready for my gig.
I am worried that she's not reading as much now.. watching more t.v. Dad has been reading to her in bed before she goes to sleep.. how freaking cute is that? Again, she didn't complain too much about pain in her back.. though if I mention possibly going to church some Sunday, she is quick to use that as an excuse. I remind her that they want to see her.
I almost cried when I watched her nod off in the chair before Dad came home. I am sure to tell her I love her, and give her lot's of gentle hugs and back rubs. She seems to appreciate that a lot.
Oh, and sure enough, when Don and my girlfriend stopped by around noon, she lit up quite a bit, and was quite lucid. She brought up a bit about her past, childhood homes and how her parents worked in banks.. It took her a second to remember Don's name, she said she wanted to say Dean, but she got it.
It was really good for her to have a little social interaction..
It is overcast and drizzly, I wonder what her mood will be like today.
Sunday was a bit tricky. We all three agreed that I would come over at 9:30 a.m., leaving Mom alone for a half hour. Wouldn't you know it, I overslept on Sunday! Never happens. Woke up at 9:45! Ran downstairs, put on coffee, fed the cats and zipped over there, walking in the door just before 10 a.m. She hardly realized I was late, engrossed in a television show on HGTV. That was a relief (later she admitted she was confused if it was me or Maria coming over).. I settled in and casually mentioned that my friend was stopping by to say hello to me on her way back home to Boston, and that she wanted to come and say a quick hello to Mom. This casual news upset Mom quite a bit at first.. I had to gently calm her down and eventually she agreed to meet her.
The next battle came a little while later when I realized Mom was shaking and cold, despite the heat being jacked up, the heating pad at her back and a throw over her legs and torso. I suggested we change into clean clothes from head to toe.. oh boy, she did not like that idea one bit, and she bursted out in frustration. I remained calm and soothing, and though it was a battle and so painful to see her react that way, I managed to get her into completely new clothes, even fresh socks. It was not pretty though.. she fought me the whole way. It's unbelievable to witness this behavior, but it really is the symptoms of the disease. Heartbreaking.
I had her put on some deodorant and run a comb through her hair and she chose a fresh bandana that matched her fresh outfit, and sure enough, once settled back down in the chair, she felt better and warmer. I managed to rub some moisturizer on her dry feet and toes before we put on the fresh socks, and I also gently applied some moisturizer on her face and hands.
We waited for Dad to come home from church. I gave her a snack of a bowl of grapes, and she ate them all down. I started lunch for her, but she wanted to wait for Dad, so I set it up so they could eat together as soon as he came back. He was home by 1 p.m., I rushed out of there to get ready for my gig.
I am worried that she's not reading as much now.. watching more t.v. Dad has been reading to her in bed before she goes to sleep.. how freaking cute is that? Again, she didn't complain too much about pain in her back.. though if I mention possibly going to church some Sunday, she is quick to use that as an excuse. I remind her that they want to see her.
I almost cried when I watched her nod off in the chair before Dad came home. I am sure to tell her I love her, and give her lot's of gentle hugs and back rubs. She seems to appreciate that a lot.
Oh, and sure enough, when Don and my girlfriend stopped by around noon, she lit up quite a bit, and was quite lucid. She brought up a bit about her past, childhood homes and how her parents worked in banks.. It took her a second to remember Don's name, she said she wanted to say Dean, but she got it.
It was really good for her to have a little social interaction..
It is overcast and drizzly, I wonder what her mood will be like today.
Friday, October 22, 2010
Calm Day
I guess I'm getting a little "sin-ile" myself, because I just spent a good half hour writing up a post and didn't save it before publishing and lost the whole thing! Hate it when that happens.. anyway, here's take two.
Just back from spending four hours next door (noon to four), and I must say, Mom was in a much calmer state today. Dad happily shared that Mom ate a good breakfast and lunch today, plus a snack. She didn't complain about her back pain at all today, though she did remark once or twice how good it feels to have the heating pad at her back and throw over her legs. When Dad left to run his errands (which included picking up her new script of Namenda, which she will start tomorrow morning), she didn't once ask where he was, or if he was back yet, or wistfully sigh, "I just wish he was home now."
After he left, I put a load of towels in the washer. Mom wanted to help, so I suggested she add the laundry detergent, which she did. I suggested we do some more exercise (they both said she had walked around the dining room table five times earlier.) She agreed to that, so we bundled her up with coat, scarf, hat and gloves, and we marched right outside to the end of the driveway. She wanted to walk down into her side garden, and she was able to name a couple of her shrubs. I had to convince her to walk one more round up the driveway and back, and I tried to stall as much as possible, because the sunshine and fresh air surely can't hurt!
Back inside, we settled into her chair and started watching a program on HGTV. I asked her if she would like some tea. At first she said no, but when I told her I was going to heat up some water anyway for myself, she changed her mind and said, okay, if you're having some, I will, too. I brought out the tea and two scones, but she declined the scone, claiming she is "sick of them," but not in a grumpy way. It was sweet, because she remarked something like, "Once Daddy finds something he likes, that's it!" She drank all of her tea, and even accepted a second half-cup.
Then the wash was done, and though she offered to help, I said, that's okay, you chill, I'll pop them in the dryer and you can help me fold them when they're done. We settled back in quietly and watched more HGTV. Occasionally, she closes her eyes for a moment, but for the most part, she was watching and seemed to be following.
When the towels were done, again, I told her to wait, and brought them up in the basket. She helped me fold the smaller ones from her chair, and when they were all folded, she wanted to put them all away right away. I said, let's wait so we can see the end of this program. This seemed to be torture for her, but she appeased me, though that basked of folded towels sitting at our feet was really nagging her!
Once the show was done, she said, "Okay, I want to put them away," and she got right up. I brought the basket into her bedroom and sorted the towels on the bed. She admitted there that this was really hard for her, but eventually, we got all of the towels put away in their "proper" places. :)
Dad came home with the new meds, new new light bulbs, and a brand new dish rack! Hooray! He read the pamphlet that comes with the Namenda, and then handed it to me to read. When I told her about the possible side effects of the drug, she didn't seem too concerned. The side effects include dizziness, confusion (ha!) and gastrointestinal problems, but this is in a small percentage of users. We talked again about her condition, and I think, I hope, she appreciates the candor we must have with her about the disease. I learned from that pamphlet that over 5.2 million people in America suffer from AD! Of course, that's the drug company's stats, but, then again, I'm not one that follows stats so much!
I was able to squeeze in another load of wash, a little light closet organizing (Mom's clothes), and some cleaning and dusting while Mom and Dad did some reading. Things always seem to get a little more harried over there as it gets to four o'clock, so I started to get ready to leave. Dad plans on using the Trader Joe's frozen shrimp stir fry that Nat brought up last weekend for dinner, so hopefully this will be easy for him and satisfying for both! Thanks Nat!
As I left today, I felt less stress. I know this post is a wee droll, but this is just another typical day. I wish I could remember some of the humorous things that sometimes happen or get said over the time. Tomorrow, I'll be leaving mid-afternoon for a show in Damariscotta, then Sunday morning, I hope to get over there as early as possible so Dad can go to church. We haven't really discussed the details yet (it's really hard for Dad and me to talk too much without Mom wanting to know what we are discussing, but then again, we try not to hide anything from her.. it's tricky.)
Anyway, all in all, a calm day, for which I am grateful. I make sure to tell Mom everyday that I love her. And Nat, she remembered that you called last night. The one thing she did complain about is that she has "nothing to read" and that the print is so small in the magazines. Let's get her some big print books gang!
Just back from spending four hours next door (noon to four), and I must say, Mom was in a much calmer state today. Dad happily shared that Mom ate a good breakfast and lunch today, plus a snack. She didn't complain about her back pain at all today, though she did remark once or twice how good it feels to have the heating pad at her back and throw over her legs. When Dad left to run his errands (which included picking up her new script of Namenda, which she will start tomorrow morning), she didn't once ask where he was, or if he was back yet, or wistfully sigh, "I just wish he was home now."
After he left, I put a load of towels in the washer. Mom wanted to help, so I suggested she add the laundry detergent, which she did. I suggested we do some more exercise (they both said she had walked around the dining room table five times earlier.) She agreed to that, so we bundled her up with coat, scarf, hat and gloves, and we marched right outside to the end of the driveway. She wanted to walk down into her side garden, and she was able to name a couple of her shrubs. I had to convince her to walk one more round up the driveway and back, and I tried to stall as much as possible, because the sunshine and fresh air surely can't hurt!
Back inside, we settled into her chair and started watching a program on HGTV. I asked her if she would like some tea. At first she said no, but when I told her I was going to heat up some water anyway for myself, she changed her mind and said, okay, if you're having some, I will, too. I brought out the tea and two scones, but she declined the scone, claiming she is "sick of them," but not in a grumpy way. It was sweet, because she remarked something like, "Once Daddy finds something he likes, that's it!" She drank all of her tea, and even accepted a second half-cup.
Then the wash was done, and though she offered to help, I said, that's okay, you chill, I'll pop them in the dryer and you can help me fold them when they're done. We settled back in quietly and watched more HGTV. Occasionally, she closes her eyes for a moment, but for the most part, she was watching and seemed to be following.
When the towels were done, again, I told her to wait, and brought them up in the basket. She helped me fold the smaller ones from her chair, and when they were all folded, she wanted to put them all away right away. I said, let's wait so we can see the end of this program. This seemed to be torture for her, but she appeased me, though that basked of folded towels sitting at our feet was really nagging her!
Once the show was done, she said, "Okay, I want to put them away," and she got right up. I brought the basket into her bedroom and sorted the towels on the bed. She admitted there that this was really hard for her, but eventually, we got all of the towels put away in their "proper" places. :)
Dad came home with the new meds, new new light bulbs, and a brand new dish rack! Hooray! He read the pamphlet that comes with the Namenda, and then handed it to me to read. When I told her about the possible side effects of the drug, she didn't seem too concerned. The side effects include dizziness, confusion (ha!) and gastrointestinal problems, but this is in a small percentage of users. We talked again about her condition, and I think, I hope, she appreciates the candor we must have with her about the disease. I learned from that pamphlet that over 5.2 million people in America suffer from AD! Of course, that's the drug company's stats, but, then again, I'm not one that follows stats so much!
I was able to squeeze in another load of wash, a little light closet organizing (Mom's clothes), and some cleaning and dusting while Mom and Dad did some reading. Things always seem to get a little more harried over there as it gets to four o'clock, so I started to get ready to leave. Dad plans on using the Trader Joe's frozen shrimp stir fry that Nat brought up last weekend for dinner, so hopefully this will be easy for him and satisfying for both! Thanks Nat!
As I left today, I felt less stress. I know this post is a wee droll, but this is just another typical day. I wish I could remember some of the humorous things that sometimes happen or get said over the time. Tomorrow, I'll be leaving mid-afternoon for a show in Damariscotta, then Sunday morning, I hope to get over there as early as possible so Dad can go to church. We haven't really discussed the details yet (it's really hard for Dad and me to talk too much without Mom wanting to know what we are discussing, but then again, we try not to hide anything from her.. it's tricky.)
Anyway, all in all, a calm day, for which I am grateful. I make sure to tell Mom everyday that I love her. And Nat, she remembered that you called last night. The one thing she did complain about is that she has "nothing to read" and that the print is so small in the magazines. Let's get her some big print books gang!
Thursday, October 21, 2010
Stages
After browsing the discussion boards at Alz.org, I realized people were categorizing their AD loved ones in stages. So far, nobody has said what stage Mom seems to be in, so I found a link that describes the stages here.
Out of the seven stages, I believe my mother is now somewhere between stage 4 and stage 5, leaning possibly more towards stage 5. Somewhere between moderate cognitive decline (mild or early-stage AD) and moderately severe cognitive decline (moderate or mid-stage AD). The last two years, the signs have been there as she declined through stages 1, 2 and 3. Why has it taken us this long to define it?
I suppose this happens to everybody in one way or another. Just now, as I was over there staying with Mom while Dad went out shopping, I spent the time organizing and condensing stuff in their kitchen, specifically the herbs and spices. My guess is those 4 separate baggies of dried thyme, all in different locations, and two extra jars of curry (two of my mother's favorite cooking spices, when she cooked all those years), where a small example of her early onset AD symptoms. We just thought that was part of her quirky nature. I've been reading that this is very common.
Mom's moods are getting very erratic these days, too. Maria suggested that the full moon and bad weather can have an effect on the moods of AD patients. Sure enough, it is a full moon and the weather is drizzly. When I got there at 10 a.m., she was content to read her book. After about an hour, she got up and down a few times, restless. By the time Dad came home, I think she was beginning to get hungry, so I gave her a couple of celery sticks with cream cheese and paprika on them. She complained halfway through eating them that the celery got stuck in her teeth. She didn't want to finish them, but I gently pushed her and sat with her, and she eventually finished them. Then I gave her a small bowl of raw almonds and peanuts. Dad was milling about, putting away his medications and things, then she got antsy about lunch. She actually said something like, "Will I ever see this thing that is called LUNCH?"
Pretty funny, pretty sad. We convinced her to wait (it was only 11:30), and it's strange because she claimed she was "full" from the two celery sticks and small handful of nuts.
I left them alone to come home and do my stuff, but I wanted to post this update first.
Out of the seven stages, I believe my mother is now somewhere between stage 4 and stage 5, leaning possibly more towards stage 5. Somewhere between moderate cognitive decline (mild or early-stage AD) and moderately severe cognitive decline (moderate or mid-stage AD). The last two years, the signs have been there as she declined through stages 1, 2 and 3. Why has it taken us this long to define it?
I suppose this happens to everybody in one way or another. Just now, as I was over there staying with Mom while Dad went out shopping, I spent the time organizing and condensing stuff in their kitchen, specifically the herbs and spices. My guess is those 4 separate baggies of dried thyme, all in different locations, and two extra jars of curry (two of my mother's favorite cooking spices, when she cooked all those years), where a small example of her early onset AD symptoms. We just thought that was part of her quirky nature. I've been reading that this is very common.
Mom's moods are getting very erratic these days, too. Maria suggested that the full moon and bad weather can have an effect on the moods of AD patients. Sure enough, it is a full moon and the weather is drizzly. When I got there at 10 a.m., she was content to read her book. After about an hour, she got up and down a few times, restless. By the time Dad came home, I think she was beginning to get hungry, so I gave her a couple of celery sticks with cream cheese and paprika on them. She complained halfway through eating them that the celery got stuck in her teeth. She didn't want to finish them, but I gently pushed her and sat with her, and she eventually finished them. Then I gave her a small bowl of raw almonds and peanuts. Dad was milling about, putting away his medications and things, then she got antsy about lunch. She actually said something like, "Will I ever see this thing that is called LUNCH?"
Pretty funny, pretty sad. We convinced her to wait (it was only 11:30), and it's strange because she claimed she was "full" from the two celery sticks and small handful of nuts.
I left them alone to come home and do my stuff, but I wanted to post this update first.
What's Been Happening
Mom's first medication for her AD (pre-official diagnosis) was 5 mg. of Donepezil (Aricept). After about 2-3 months, her doctor, Dr. N., upped the dose to 10 mg. a day. I believe it was at that visit that he also suggest she visit with the neurologist, Dr. D., and get an MRI on her brain. Sometime between those visits, she was also prescribed Remeron to increase her appetite (as with most people with AD, I've learned, one of the symptoms is loss of interest in eating and food) and it also acts as a mild anti-depressant. She added that pill for the first two nights, but didn't like the way it made her feel so groggy in the morning, so Dad allowed her to stop it for about a week. This was all still before "the official diagnosis", the brain scan results. And all this was only a few weeks ago.
On Friday, October 8, 2010, a few days after the test results were shown and Dad began to believe the inevitable truth, Dad left after lunch to fulfill a commitment he had made to work a political booth at the local fair. Being away for this long a period (over 4 -6 hours) was still something he thought he could do. I live next door, and I've been keeping tabs on their whereabouts for quite some time now. Mom was distressed that Dad would be leaving for so long, and when I stopped by to check in on her about an hour later, she complained that she hurt her back. I assumed it was a muscle pull and gave her an Aleve, propped her up in her favorite chair with a book, and went back home to attend to my chores.
Around 4:30 that afternoon, she called and was stressed that Dad was not home yet (I assured her he was on his way, traffic was bad, he was picking up dinner), she agreed to that, but then admitted her back was really bothering her. I offered to bring my heating pad over, and she was very happy about that. This was a holiday weekend, and my older sister Clarissa came up Saturday afternoon (she lives 2 1/2 - 3 hours away in Mass.) for one night to check in on things. She was pretty shocked at what she saw with Mom. We had a long discussion about it on Sunday afternoon in private, and we both agreed things were getting to a critical stage.
It wasn't until Tuesday morning that Dad was able to call Dr. N., the internal medicine doctor, about Mom's back pain. He also told the assistant that Mom hadn't been taking the appetite/anti-depressant drug, Remeron, but somehow, Dad had convinced her to start it up again, but it had only been a couple of nights. Dr. N. suggested she should come in that day for an X ray.
Later that night, Tuesday October 12, the doctors office called with the results. Mom had a compression fracture of the 6th thoracic vertebrate. She was upset and lifting a small tray at the same time, this is how it happened. Because she has lost so much weight and been so inactive for over a year now, she has become very frail. In hindsight, I wish I had been more aggressive with her eating and exercising, however, there is no sense in beating myself up about that now.
Between the alarming reality of this news and the visit with my sister, Dad finally realized it was time to get more proactive and at least gain some extra help. Our neighbor had already suggested a great private home care worker, who lives just down the road, and helped out our other neighbor's life partner in his last year with dementia and AD. Dad was set on calling her, and Mom hadn't had a bath in over two weeks. He had given her a few in the last month, as I had one on the last weekend of September, but now with the back pain and the deep tub, it was time for extra help. He called Maria and she came over for a visit that afternoon (after the X ray visit and before the X ray results phone call.) I met with her, too, and it was agreed that she would come the next morning and give Mom a bath, and at that same time once a week. Maria went to our neighbor's house and got the special bath chair, and I told Dad to go to the local pharmacy and purchase a shower hose.
Maria was great, and in our first visit, also suggested purchasing soy protein powder or Ensure to help boost Mom's caloric intake. She had other suggestions like prunes, broccoli and bananas for potassium. In the last few days, Mom's appetite has seemed to increase, and Dad has been much better about giving her more foods with snacks in between meals. Meanwhile, her back pain is still there, off and on, and a Tylenol every four hours was prescribed for her back pain, as well as movement.
The next Saturday, October 16, my brother Nat came up from Mass. for Saturday night to spend some time with Mom and Dad. He was really great and brought up some food and one of his favorite drinks, soy milk. Every Sunday, Mom and Dad have always gone to church, but, wouldn't you know it, now Mom's coming up on week four of refusing to go anymore. The back pain was the first excuse, but it's also the confusion with singing in the choir and talking with the people, classic symptoms of AD. So, on that Sunday, the second time she missed church, Nat spent most of the morning with her, and even got her up and walking around a bit. Thanks to Nat, she now tears around the dining room table for exercise. It's kind of cute to see.
Later that day, a couple from church, friends who had spent time with Mom before she worsened, came to stay with Mom for the afternoon. Dad was performing in a church concert from 2 - 3 pm, and would not be home until 4 pm. Sadly, he had to do it alone this time. Up until this year, they were always a team in the choir. Because Mom's back pain was still acute, she wanted to stay home, though she hated to miss her husband's performance. The couple from church were very patient and sweet, and just sat and read together while Mom nodded off for a bit. She seems to sleep a lot more now.
So, this pretty much leads me up to yesterday, October 20, where we visited with the neurologist, Dr. D., for a discussion about the results of her brain scan. Right off the bat, the first simple question he asked Mom made it painfully clear she is suffering from this horrible disease. She could not connect her thoughts to her words, she stammered, she got lost, she looked to her husband for help. It was very painful to watch. Finally, after three years of wondering, of assuming that Mom suffers from Alzheimer's Disease, Dr. D. was the first official to come out and say it, directly to her face, that she is experiencing the first stages of Alzheimer's Disease. Finally, somebody said it. Dad said, "this is what I have suspected" and so finally, he said it, too. Mom nodded, she knows.
Dr. D. clearly stated there was no known cure for this disease, but empathetically proclaimed he really wanted to help her. I really believed him. He asked her if she would like to participate in a clinical trial, and when she strongly said "no", he did not push the matter. He could see how uncomfortable Mom was with her back pain, and wrote a letter to Dr. N. to prescribe her a stronger pain medication. Meanwhile, Dr. D. prescribed the next phase in this journey, another drug called Memantine, or Namenda. She will start this drug tonight, and gradually build up to the suggested dosage.
Meanwhile, I need to start getting organized and work out a plan of action with Dad. This is what I'm willing to do and want to do. I am in a position to help, and Dad and Mom need it. So, I'll stop writing for now, and soon I will go over to their house and stay with Mom so Dad can go pick up the pills and buy foods for dinner. Hopefully something with curry. Dr. D. says studies show that curry is good for the brain. :)
On Friday, October 8, 2010, a few days after the test results were shown and Dad began to believe the inevitable truth, Dad left after lunch to fulfill a commitment he had made to work a political booth at the local fair. Being away for this long a period (over 4 -6 hours) was still something he thought he could do. I live next door, and I've been keeping tabs on their whereabouts for quite some time now. Mom was distressed that Dad would be leaving for so long, and when I stopped by to check in on her about an hour later, she complained that she hurt her back. I assumed it was a muscle pull and gave her an Aleve, propped her up in her favorite chair with a book, and went back home to attend to my chores.
Around 4:30 that afternoon, she called and was stressed that Dad was not home yet (I assured her he was on his way, traffic was bad, he was picking up dinner), she agreed to that, but then admitted her back was really bothering her. I offered to bring my heating pad over, and she was very happy about that. This was a holiday weekend, and my older sister Clarissa came up Saturday afternoon (she lives 2 1/2 - 3 hours away in Mass.) for one night to check in on things. She was pretty shocked at what she saw with Mom. We had a long discussion about it on Sunday afternoon in private, and we both agreed things were getting to a critical stage.
It wasn't until Tuesday morning that Dad was able to call Dr. N., the internal medicine doctor, about Mom's back pain. He also told the assistant that Mom hadn't been taking the appetite/anti-depressant drug, Remeron, but somehow, Dad had convinced her to start it up again, but it had only been a couple of nights. Dr. N. suggested she should come in that day for an X ray.
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| October 11, 2010 |
Later that night, Tuesday October 12, the doctors office called with the results. Mom had a compression fracture of the 6th thoracic vertebrate. She was upset and lifting a small tray at the same time, this is how it happened. Because she has lost so much weight and been so inactive for over a year now, she has become very frail. In hindsight, I wish I had been more aggressive with her eating and exercising, however, there is no sense in beating myself up about that now.
Between the alarming reality of this news and the visit with my sister, Dad finally realized it was time to get more proactive and at least gain some extra help. Our neighbor had already suggested a great private home care worker, who lives just down the road, and helped out our other neighbor's life partner in his last year with dementia and AD. Dad was set on calling her, and Mom hadn't had a bath in over two weeks. He had given her a few in the last month, as I had one on the last weekend of September, but now with the back pain and the deep tub, it was time for extra help. He called Maria and she came over for a visit that afternoon (after the X ray visit and before the X ray results phone call.) I met with her, too, and it was agreed that she would come the next morning and give Mom a bath, and at that same time once a week. Maria went to our neighbor's house and got the special bath chair, and I told Dad to go to the local pharmacy and purchase a shower hose.
Maria was great, and in our first visit, also suggested purchasing soy protein powder or Ensure to help boost Mom's caloric intake. She had other suggestions like prunes, broccoli and bananas for potassium. In the last few days, Mom's appetite has seemed to increase, and Dad has been much better about giving her more foods with snacks in between meals. Meanwhile, her back pain is still there, off and on, and a Tylenol every four hours was prescribed for her back pain, as well as movement.
The next Saturday, October 16, my brother Nat came up from Mass. for Saturday night to spend some time with Mom and Dad. He was really great and brought up some food and one of his favorite drinks, soy milk. Every Sunday, Mom and Dad have always gone to church, but, wouldn't you know it, now Mom's coming up on week four of refusing to go anymore. The back pain was the first excuse, but it's also the confusion with singing in the choir and talking with the people, classic symptoms of AD. So, on that Sunday, the second time she missed church, Nat spent most of the morning with her, and even got her up and walking around a bit. Thanks to Nat, she now tears around the dining room table for exercise. It's kind of cute to see.
Later that day, a couple from church, friends who had spent time with Mom before she worsened, came to stay with Mom for the afternoon. Dad was performing in a church concert from 2 - 3 pm, and would not be home until 4 pm. Sadly, he had to do it alone this time. Up until this year, they were always a team in the choir. Because Mom's back pain was still acute, she wanted to stay home, though she hated to miss her husband's performance. The couple from church were very patient and sweet, and just sat and read together while Mom nodded off for a bit. She seems to sleep a lot more now.
So, this pretty much leads me up to yesterday, October 20, where we visited with the neurologist, Dr. D., for a discussion about the results of her brain scan. Right off the bat, the first simple question he asked Mom made it painfully clear she is suffering from this horrible disease. She could not connect her thoughts to her words, she stammered, she got lost, she looked to her husband for help. It was very painful to watch. Finally, after three years of wondering, of assuming that Mom suffers from Alzheimer's Disease, Dr. D. was the first official to come out and say it, directly to her face, that she is experiencing the first stages of Alzheimer's Disease. Finally, somebody said it. Dad said, "this is what I have suspected" and so finally, he said it, too. Mom nodded, she knows.
Dr. D. clearly stated there was no known cure for this disease, but empathetically proclaimed he really wanted to help her. I really believed him. He asked her if she would like to participate in a clinical trial, and when she strongly said "no", he did not push the matter. He could see how uncomfortable Mom was with her back pain, and wrote a letter to Dr. N. to prescribe her a stronger pain medication. Meanwhile, Dr. D. prescribed the next phase in this journey, another drug called Memantine, or Namenda. She will start this drug tonight, and gradually build up to the suggested dosage.
Meanwhile, I need to start getting organized and work out a plan of action with Dad. This is what I'm willing to do and want to do. I am in a position to help, and Dad and Mom need it. So, I'll stop writing for now, and soon I will go over to their house and stay with Mom so Dad can go pick up the pills and buy foods for dinner. Hopefully something with curry. Dr. D. says studies show that curry is good for the brain. :)
Introduction
Today, I accompanied Dad and Mom down to Portland for a second meeting with the neurologist. The first meeting was almost two months ago, which I did not attend, and it was in that visit that a brain scan was conducted as well as some memory tests. Due to some glitches and human error, it took over two weeks for us to see the results. It was the last paragraph at the end of the one sheet of paper of conclusion that finally convinced my scientist Dad what I and my siblings have suspected for over two years.
My Mom has Alzheimer Disease.
Since that day, we have all stepped up on reading and learning about the disease, in between juggling the new reality of caring for my mother. It's been a slow change, yet when I look back on it, count back the days and events that I can remember over the last few years, I realize it's going really fast. I have especially become aware in the last few weeks and days how quickly this disease is taking my mother away. It's an adjustment for her and for the family. The changes in her behavior and thinking processes started subtly and are gradually snowballing into deeper shifting. The changes in my thinking are changing quickly, as well.
When I got home from the visit to the neurologist, and after I filled in my partner with the details of the day over a glass of wine, ate dinner, watched my program on television, took a nap on the couch, then did the dishes and cleaned up the kitchen, I realized that I should be keeping better track of this whole process. I've been really bad at writing down the events, distracted by own life and idle practices, so tonight, I've decided to start this fresh blog. I'm not sure how much I'll go into the past history, but for myself, I would like to post about some of the key moments in this journey into dementia with my Mom.
One of the saddest parts that all caregivers share, I suppose, is watching your loved one slowly disappear. I am just now reading more about this disease (thank you, internet), and probably tomorrow, I will join the discussion board on alz.org. I would like to keep this blog separate from my other blog in order to give me a mission here. I hope to keep track of the events and trails and tribulations in this journey, as well as vent my future fears, frustration and sadness. I also hope to post small moments of joy and success, as I am learning how to look for these moments and cherish them.
Next post, I hope to go into a bit more history and some of the key moments that led us to this point today.
My Mom has Alzheimer Disease.
Since that day, we have all stepped up on reading and learning about the disease, in between juggling the new reality of caring for my mother. It's been a slow change, yet when I look back on it, count back the days and events that I can remember over the last few years, I realize it's going really fast. I have especially become aware in the last few weeks and days how quickly this disease is taking my mother away. It's an adjustment for her and for the family. The changes in her behavior and thinking processes started subtly and are gradually snowballing into deeper shifting. The changes in my thinking are changing quickly, as well.
When I got home from the visit to the neurologist, and after I filled in my partner with the details of the day over a glass of wine, ate dinner, watched my program on television, took a nap on the couch, then did the dishes and cleaned up the kitchen, I realized that I should be keeping better track of this whole process. I've been really bad at writing down the events, distracted by own life and idle practices, so tonight, I've decided to start this fresh blog. I'm not sure how much I'll go into the past history, but for myself, I would like to post about some of the key moments in this journey into dementia with my Mom.
One of the saddest parts that all caregivers share, I suppose, is watching your loved one slowly disappear. I am just now reading more about this disease (thank you, internet), and probably tomorrow, I will join the discussion board on alz.org. I would like to keep this blog separate from my other blog in order to give me a mission here. I hope to keep track of the events and trails and tribulations in this journey, as well as vent my future fears, frustration and sadness. I also hope to post small moments of joy and success, as I am learning how to look for these moments and cherish them.
Next post, I hope to go into a bit more history and some of the key moments that led us to this point today.
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| Driving to the neurologist's office today. |
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