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Dementia Week
Just got back yesterday from a week in KC. My mother has been in increasing trouble, and spent Saturday night at the hospital after an episode of extreme back pain; I spoke to the ER, and they couldn't find a reason for the pain, or relieve it by use of the usual painkillers, so they were looking for other causes. By the time I got there the next Saturday night, she had been home for days and said she felt fine...
I've posted before about her increasing mental fuzziness. I noticed maybe 8 years ago that her driving was becoming more tentative, and it took her longer to correct when she noticed a problem. Then about four years ago, she sent me a collection of photocopies of her tax data that was full of duplicates, half-pages, and missing data. My mother was a secretary, and highly detail-oriented and precise; all that began to disappear, and she lost the ability to type maybe 5 years ago.
This last month had several problems to go along with the hospitalizations and ER visits (5 in 6 months.) She tried to renew her drivers license, and was stymied by both a sign recognition test and the attempt to write a check (she wrote words in the amount box and failed to date it.)
Here's some material from another post:
The first thing I did when I got there (since it was a weekend) was start cleaning the fridge, which was a horror of forgotten leftovers and expired food, She only sees and uses the front row, so anything pushed back stays there forever. All she had available to eat was Perkins restaurant leftovers and processed sugary foods like dried fruit and Twinkies, plus cookies and candy. So I triaged two shelves and cleaned them, then went to the store to buy some food for the week.
Monday we went to her doctor. I went in with her and explained what we thought was happening with her increasing dementia; the doctor was uncomfortable since his usual mode is to process elderly patients, proscribe drugs, and bill Medicare or their insurance company; making longer-term diagnoses or being proactive is not their role. He told me he'd write a letter certifying her as unable to handle her financial affairs, and made an appointment for a brain MRI Thursday. He also wanted to start her on Aricept, an anti-Alzheimer's drug that might slow the progress of the dementia, but required blood testing; the phlebotomist could not get more than half a vial of blood from her because she was too dehydrated.
Tuesday we toured Wexford Place, an assisted living facility a few miles west. It was essentially an apartment building with additional common areas for dining, entertainment, and recreation, including a small pool and gym. The marketing director (salesperson) was a woman about my age (they all were) and quite sympathetic, we had lunch there, which included a tasty mushroom Asiago soup. She seemed to like it but commented she loved her house and would never leave.
That evening we had dinner with Ralph, her bf, at Perkins, where they eat three times a week (and she lives on the leftovers the rest of the time.) Ralph drives over from Hickman Mills (a long way) often to pick her up and go places. She had Hawaiian Pancakes, an odd dinner dish with pancakes, pineapple, and Maraschino cherries on top; I later showed her the nutritional info on their web site, including the 180% of daily allowance of sodium.
Wednesday we toured Avonlea/Kendallwood, assisted living a bit older and more nursing-home like. But while older and with smaller units without kitchens, residents seemed happy, and there were many frail people obviously enjoying themselves. They have a Wii bowling league networked with other senior facilities and were practicing for an upcoming defense of their championship trophy. This place was about $800 a month cheaper, and threw in a weekly bath visit and daily medication checks at no charge, which is exactly what my mother needs.
Then it was a quick stop at the DMV, where the sole (and very patient) Latino clerk tried to help her renew her license. He picked up on the purpose of the visit, which was to show her she couldn't pass the test; they accepted the eye doctor's certification of her visual acuity at 20/20, but she could not identify any sign but a stop sign in the optical testing box. This may be due to inability to retrieve the words for the signs, but it's far from clear she understands what they mean anymore. She left thinking that maybe if she studied more she might pass; I left certain that she shouldn't.
Then off to her eye doctor, where we discussed her problems understanding what she sees. He scheduled a "lens polishing" -- she has had artificial lenses put in a year ago, and the doc said they had a film of cells on them that might be obscuring her vision slightly. The procedure uses a laser to remove the cells. Scheduling transport for her will be another job...
Thursday we visited my cousin Karen and her husband Mike in Pleasant Valley, then attended 45 minutes of a KC Banjo Band concert at a nursing home nearby (Ralph-the-bf plays with them.) now *that* was a depressing environment, and is what my mother thinks of as assisted living -- lots of very frail old people barely able to move around. Left early and got her to NKC Hospital for the MRI on time.
Friday it was back to the doctors to try to get blood again; I had reminded her to drink, and she had maybe a quart of water that morning, so there was no problem. The doctor had the letter available later in the day.
We dropped in at the store to buy toilet paper and a print cartridge (hers had dried out.) I lost her in the store and looked everywhere, but she had left the place I left her, and I found her finally in the front of the store buying the toilet paper with cash because she couldn't find her credit card.
I had contacted the assisted living place my cousin Karen mentioned, Riverstone, new and quite resort-like, so we rushed over there for a tour when I called from the store and the salesperson told me we could only see it if we came right then. So we rushed over and got there a bit after 11, too late to have lunch with them, but toured the place -- two years old, like an enclosed town center with wings of apartments leading away. Very much a cruise ship on land, with "anytime dining," entertainment in a 150-seat theater, 24x7 food service, a staff nurse and very cheerful, happy residents. It was eerily Stepford-like, or like the Truman Show. The one downside is that it's further out, almost by the airport, which would mean even more driving for Ralph.
I arranged for my mother and Ralph and I to have dinner there that evening, and chaffeured them out; we arrived a bit late so many diners were already leaving (at 6:30!), but they enjoyed the free food and the attentive service (by high-school-aged kids.) We toured a unit for Ralph's benefit, and the pronounced the place lovely.
But of course my mother still is too afraid to go; she thinks Ralph will stop coming to take her places and she won't like being away from her home. She didn't use to be so fearful, but now her horizon is smaller and smaller, and she barely remembers the daily frustration of not finding things, harassment from bill collectors (she hasn't paid a bill by check in months, and the many hospital; bills are not being paid.) She is so far gone now that she denies there is a problem, pretending she can take her pills properly and do anything she wants. She now says, for example, that she doesn't write checks because she doesn't like to, not because she can't...
I pretty much have to make her go. Her dementia is caused by small strokes in the finer vessels of her brain due to high blood pressure and atherosclerosis, and any error in medication creates conditions causing more damage, making it even less likely she can safely manage her medication; she went to the ER a few months ago with bp of 300/something. Her only chance to stabilize is under daily supervision, and she needs to maintain her current social circle and friends, so assisted living near her home is the only option.
Everyone (neighbors, relatives, my brother, friends) except possibly Ralph (who I should probably talk to directly) thinks this is a good idea. I am just proceeding with it despite her resistance, and will have to go back to help her pack and move when a unit opens up. I've already put a deposit down on the Riverstone unit. And after a few months, I'll have to empty out and sell her house.
I've posted before about her increasing mental fuzziness. I noticed maybe 8 years ago that her driving was becoming more tentative, and it took her longer to correct when she noticed a problem. Then about four years ago, she sent me a collection of photocopies of her tax data that was full of duplicates, half-pages, and missing data. My mother was a secretary, and highly detail-oriented and precise; all that began to disappear, and she lost the ability to type maybe 5 years ago.
This last month had several problems to go along with the hospitalizations and ER visits (5 in 6 months.) She tried to renew her drivers license, and was stymied by both a sign recognition test and the attempt to write a check (she wrote words in the amount box and failed to date it.)
Here's some material from another post:
I had planned to leave Saturday for a week in KC to hopefully see some assisted living places and wrap up the financial work. One of my mother's neighbors called us Saturday morning -- my mother had called 911 complaining of extreme pain and been taken away in an ambulance. My mother says she thinks she fell but doesn't remember, but she was in a lot of pain, which the painkillers the hospital gave her didn't relieve. I spoke to her the next day (when she had been assigned a room) and while weak she sounded okay; tests showed nothing broken and no explanation for the pain. They were going to assign her a visiting nurse and send her home. It didn't sound like it would be useful for me to go early, so I'm going to stay here and do prep for the tasks; at the very least this may have weakened her resistance to assisted living, since it's obvious even to her that 5 ER visits in six months and the possibility she'd injure herself more seriously and spend days waiting for help means a more supportive facility would be a good idea. But she's afraid....
The first thing I did when I got there (since it was a weekend) was start cleaning the fridge, which was a horror of forgotten leftovers and expired food, She only sees and uses the front row, so anything pushed back stays there forever. All she had available to eat was Perkins restaurant leftovers and processed sugary foods like dried fruit and Twinkies, plus cookies and candy. So I triaged two shelves and cleaned them, then went to the store to buy some food for the week.
Monday we went to her doctor. I went in with her and explained what we thought was happening with her increasing dementia; the doctor was uncomfortable since his usual mode is to process elderly patients, proscribe drugs, and bill Medicare or their insurance company; making longer-term diagnoses or being proactive is not their role. He told me he'd write a letter certifying her as unable to handle her financial affairs, and made an appointment for a brain MRI Thursday. He also wanted to start her on Aricept, an anti-Alzheimer's drug that might slow the progress of the dementia, but required blood testing; the phlebotomist could not get more than half a vial of blood from her because she was too dehydrated.
Tuesday we toured Wexford Place, an assisted living facility a few miles west. It was essentially an apartment building with additional common areas for dining, entertainment, and recreation, including a small pool and gym. The marketing director (salesperson) was a woman about my age (they all were) and quite sympathetic, we had lunch there, which included a tasty mushroom Asiago soup. She seemed to like it but commented she loved her house and would never leave.
That evening we had dinner with Ralph, her bf, at Perkins, where they eat three times a week (and she lives on the leftovers the rest of the time.) Ralph drives over from Hickman Mills (a long way) often to pick her up and go places. She had Hawaiian Pancakes, an odd dinner dish with pancakes, pineapple, and Maraschino cherries on top; I later showed her the nutritional info on their web site, including the 180% of daily allowance of sodium.
Wednesday we toured Avonlea/Kendallwood, assisted living a bit older and more nursing-home like. But while older and with smaller units without kitchens, residents seemed happy, and there were many frail people obviously enjoying themselves. They have a Wii bowling league networked with other senior facilities and were practicing for an upcoming defense of their championship trophy. This place was about $800 a month cheaper, and threw in a weekly bath visit and daily medication checks at no charge, which is exactly what my mother needs.
Then it was a quick stop at the DMV, where the sole (and very patient) Latino clerk tried to help her renew her license. He picked up on the purpose of the visit, which was to show her she couldn't pass the test; they accepted the eye doctor's certification of her visual acuity at 20/20, but she could not identify any sign but a stop sign in the optical testing box. This may be due to inability to retrieve the words for the signs, but it's far from clear she understands what they mean anymore. She left thinking that maybe if she studied more she might pass; I left certain that she shouldn't.
Then off to her eye doctor, where we discussed her problems understanding what she sees. He scheduled a "lens polishing" -- she has had artificial lenses put in a year ago, and the doc said they had a film of cells on them that might be obscuring her vision slightly. The procedure uses a laser to remove the cells. Scheduling transport for her will be another job...
Thursday we visited my cousin Karen and her husband Mike in Pleasant Valley, then attended 45 minutes of a KC Banjo Band concert at a nursing home nearby (Ralph-the-bf plays with them.) now *that* was a depressing environment, and is what my mother thinks of as assisted living -- lots of very frail old people barely able to move around. Left early and got her to NKC Hospital for the MRI on time.
Friday it was back to the doctors to try to get blood again; I had reminded her to drink, and she had maybe a quart of water that morning, so there was no problem. The doctor had the letter available later in the day.
We dropped in at the store to buy toilet paper and a print cartridge (hers had dried out.) I lost her in the store and looked everywhere, but she had left the place I left her, and I found her finally in the front of the store buying the toilet paper with cash because she couldn't find her credit card.
I had contacted the assisted living place my cousin Karen mentioned, Riverstone, new and quite resort-like, so we rushed over there for a tour when I called from the store and the salesperson told me we could only see it if we came right then. So we rushed over and got there a bit after 11, too late to have lunch with them, but toured the place -- two years old, like an enclosed town center with wings of apartments leading away. Very much a cruise ship on land, with "anytime dining," entertainment in a 150-seat theater, 24x7 food service, a staff nurse and very cheerful, happy residents. It was eerily Stepford-like, or like the Truman Show. The one downside is that it's further out, almost by the airport, which would mean even more driving for Ralph.
I arranged for my mother and Ralph and I to have dinner there that evening, and chaffeured them out; we arrived a bit late so many diners were already leaving (at 6:30!), but they enjoyed the free food and the attentive service (by high-school-aged kids.) We toured a unit for Ralph's benefit, and the pronounced the place lovely.
But of course my mother still is too afraid to go; she thinks Ralph will stop coming to take her places and she won't like being away from her home. She didn't use to be so fearful, but now her horizon is smaller and smaller, and she barely remembers the daily frustration of not finding things, harassment from bill collectors (she hasn't paid a bill by check in months, and the many hospital; bills are not being paid.) She is so far gone now that she denies there is a problem, pretending she can take her pills properly and do anything she wants. She now says, for example, that she doesn't write checks because she doesn't like to, not because she can't...
I pretty much have to make her go. Her dementia is caused by small strokes in the finer vessels of her brain due to high blood pressure and atherosclerosis, and any error in medication creates conditions causing more damage, making it even less likely she can safely manage her medication; she went to the ER a few months ago with bp of 300/something. Her only chance to stabilize is under daily supervision, and she needs to maintain her current social circle and friends, so assisted living near her home is the only option.
Everyone (neighbors, relatives, my brother, friends) except possibly Ralph (who I should probably talk to directly) thinks this is a good idea. I am just proceeding with it despite her resistance, and will have to go back to help her pack and move when a unit opens up. I've already put a deposit down on the Riverstone unit. And after a few months, I'll have to empty out and sell her house.