Help & online support while caring for an elderly relative with vascular dementia?
December 2, 2008 9:09 AM Subscribe
Two questions, really: specifically, how can I get my aunt with vascular dementia to recognize that she needs help and can no longer live alone? And generally, I'm looking for blogs and support forums on dealing with people with dementia.
My 79 year old aunt, who has spent her life being a wonderful, bohemian artist, traveling and living alone all over the world (most recently in NYC) had a debilitating stroke at the end of May that left her with vascular dementia. Vascular dementia is different than Alzheimers on some levels - the progression is not so inevitable; there's more spatial weirdness, etc., but in other ways it's very similar. At any rate, we (meaning my brothers, my mother, who was her sister, and I) moved her down to NC and she lived with my mother for a couple months until my mother died suddenly at the end of August. Since then, we've gone through a lot of changes and things have been wildly unstable, to say the least.
Currently, she is living with me. Physically, she's in pretty good shape for 79 but mentally - well. She comes and goes. Her memory isn't very good; she has absolutely no grasp on numbers of any kind, she is incapable of planning ahead - even for something so simple as a sandwich - she is extremely spatially disoriented and, while there are times you would think she is completely cogent and fine, there are other times when she makes very little sense. Unfortunately, she doesn't recognize this. She insists that there is nothing wrong with her and that there is no reason why she can't live alone in her house.
Using her money and with her consent, we bought her a small house in my neighborhood with the plan to move her into it with a caregiver. We did this knowing that she would hate being in an assisted living facility and because this option seemed cheaper over the long run. We don't have guardianship of her or anything like that - just financial power of attorney which has already proven to be a total hassle since she's incapable of distinguishing between 5 cents, 5 dollars, 500 dollars and so on but not of arguing about it.
She is now refusing a caregiver, refusing any help, demanding to be moved into the house by herself, refusing to consider building onto the house to make it more accessible for a caregiver and on and on. She will look me right in the face and swear up and down that she can cook for herself, bathe herself and so on when I know for a fact (because I've been doing it) that this is simply and absolutely not true. I have to handle her medications, make her meals, get her to change her clothes and, well, the list goes on. She is not capable of using a phone - most of the time, but then she has clear moments - and it's unlikely that she would respond to a smoke alarm. There was a scary episode this summer when a smoke alarm went off and she simply failed to notice it. It's like there's a stimulus/response thing missing in her brain. Along with all the other stuff that goes missing sometimes, like my name and how to find the front door. Sigh.
I've bought a book and I'm reading it, although it hasn't, so far, been very helpful. We tried taking her to a neuropsychologist who was supposed to explain to her that she needed, basically, assisted living and that went over like a lead balloon, which is to say that she agreed with him fine while we were all in there but within two days she decided he was an idiot and there was nothing wrong with her. Coincidentally, I just got off the phone with an occupational therapist who basically reiterated everything I've just written: she shouldn't live alone and she refuses to recognize that.
At this point I'm really tempted to just take her over to her house and say good luck but I'm terrified to do that - she really wouldn't be safe. Has anyone else gone through this? How did you get your relative to accept the help they need? Should I take her to her house, put minimum help in place - the part time caregiver we've had for some months (who she's currently refusing to pay and claiming is no good,) the physical and occupational therapists who come by intermittently and my brother and I twice a day with meds and food - and hope for the best? You would think that a couple of days of that would show her she needed help but that would mean she was thinking rationally - and she's not, most of the time.
And, for the second part of my question, are there blogs & forums out there where other people are going through this? I've seen the NYT eldercare blogs but I'm looking more for just basic, day to day blogs - an eldercare version of the mommyblog community, if such a thing exists. All my googling seems just to lead me to sites where people have things to sell but that's not what I'm looking for. I want to talk to other people in the same boat I'm in - there must be some.
I did read this question and yes, I recognize the similarities, but I'm hoping for more specific answers.
My 79 year old aunt, who has spent her life being a wonderful, bohemian artist, traveling and living alone all over the world (most recently in NYC) had a debilitating stroke at the end of May that left her with vascular dementia. Vascular dementia is different than Alzheimers on some levels - the progression is not so inevitable; there's more spatial weirdness, etc., but in other ways it's very similar. At any rate, we (meaning my brothers, my mother, who was her sister, and I) moved her down to NC and she lived with my mother for a couple months until my mother died suddenly at the end of August. Since then, we've gone through a lot of changes and things have been wildly unstable, to say the least.
Currently, she is living with me. Physically, she's in pretty good shape for 79 but mentally - well. She comes and goes. Her memory isn't very good; she has absolutely no grasp on numbers of any kind, she is incapable of planning ahead - even for something so simple as a sandwich - she is extremely spatially disoriented and, while there are times you would think she is completely cogent and fine, there are other times when she makes very little sense. Unfortunately, she doesn't recognize this. She insists that there is nothing wrong with her and that there is no reason why she can't live alone in her house.
Using her money and with her consent, we bought her a small house in my neighborhood with the plan to move her into it with a caregiver. We did this knowing that she would hate being in an assisted living facility and because this option seemed cheaper over the long run. We don't have guardianship of her or anything like that - just financial power of attorney which has already proven to be a total hassle since she's incapable of distinguishing between 5 cents, 5 dollars, 500 dollars and so on but not of arguing about it.
She is now refusing a caregiver, refusing any help, demanding to be moved into the house by herself, refusing to consider building onto the house to make it more accessible for a caregiver and on and on. She will look me right in the face and swear up and down that she can cook for herself, bathe herself and so on when I know for a fact (because I've been doing it) that this is simply and absolutely not true. I have to handle her medications, make her meals, get her to change her clothes and, well, the list goes on. She is not capable of using a phone - most of the time, but then she has clear moments - and it's unlikely that she would respond to a smoke alarm. There was a scary episode this summer when a smoke alarm went off and she simply failed to notice it. It's like there's a stimulus/response thing missing in her brain. Along with all the other stuff that goes missing sometimes, like my name and how to find the front door. Sigh.
I've bought a book and I'm reading it, although it hasn't, so far, been very helpful. We tried taking her to a neuropsychologist who was supposed to explain to her that she needed, basically, assisted living and that went over like a lead balloon, which is to say that she agreed with him fine while we were all in there but within two days she decided he was an idiot and there was nothing wrong with her. Coincidentally, I just got off the phone with an occupational therapist who basically reiterated everything I've just written: she shouldn't live alone and she refuses to recognize that.
At this point I'm really tempted to just take her over to her house and say good luck but I'm terrified to do that - she really wouldn't be safe. Has anyone else gone through this? How did you get your relative to accept the help they need? Should I take her to her house, put minimum help in place - the part time caregiver we've had for some months (who she's currently refusing to pay and claiming is no good,) the physical and occupational therapists who come by intermittently and my brother and I twice a day with meds and food - and hope for the best? You would think that a couple of days of that would show her she needed help but that would mean she was thinking rationally - and she's not, most of the time.
And, for the second part of my question, are there blogs & forums out there where other people are going through this? I've seen the NYT eldercare blogs but I'm looking more for just basic, day to day blogs - an eldercare version of the mommyblog community, if such a thing exists. All my googling seems just to lead me to sites where people have things to sell but that's not what I'm looking for. I want to talk to other people in the same boat I'm in - there must be some.
I did read this question and yes, I recognize the similarities, but I'm hoping for more specific answers.
Seconding ikkyu2, you just can't provide an option or try to settle this with rational persuasion. Be sure you have a valid POA and health proxy. If questioned by her about any of the decisions, simply state your reasons and move on. ("You need a caretaker because I've been taking care of you while you're living here, but I'm not moving in with you.") Perhaps it will help if you can avoid words like "caretaker" or even "companion". If you have someone already or can find someone before the move, maybe the caretaker can start out by coming to your house part time, so that the transition to her own house feels more natural.
posted by beagle at 9:31 AM on December 2, 2008
posted by beagle at 9:31 AM on December 2, 2008
One thought might be telling her that she really has two options- she can live in her own home with a caregiver, or she can move into a retirement home.
If necessary, obtain conservatorship over her estate. I know little about this other than the fact that my aunt is currently in conservatorship proceedings for my Grandmother right now for similar reasons. Once granted (by a judge, at least here in California) she can make all of the decisions on my Gma's behalf.
Your aunt will not be happy about this, but at least you're offering her options- she can decide on the home, or accept a caregiver.
On a side note regarding the caregiver- my Grandma has treated the caregivers she has had poorly, alternately babying them and trying to adopt them (gifts, inquiries into their personal lives) and sending hateful messages to their employerers. As a result, we now have a caregiver that costs a lot more than the first half dozen she got rid of and while he treats Gma appropriately, doesn't chat or have fun with her like the first few. Try to make sure your Aunt treats the caregivers nicely...
posted by arnicae at 10:02 AM on December 2, 2008
If necessary, obtain conservatorship over her estate. I know little about this other than the fact that my aunt is currently in conservatorship proceedings for my Grandmother right now for similar reasons. Once granted (by a judge, at least here in California) she can make all of the decisions on my Gma's behalf.
Your aunt will not be happy about this, but at least you're offering her options- she can decide on the home, or accept a caregiver.
On a side note regarding the caregiver- my Grandma has treated the caregivers she has had poorly, alternately babying them and trying to adopt them (gifts, inquiries into their personal lives) and sending hateful messages to their employerers. As a result, we now have a caregiver that costs a lot more than the first half dozen she got rid of and while he treats Gma appropriately, doesn't chat or have fun with her like the first few. Try to make sure your Aunt treats the caregivers nicely...
posted by arnicae at 10:02 AM on December 2, 2008
Wait, you have financial power of attorney but she is refusing to pay the caregiver? From what you have said she should not be making any decisions about her money at all.
If you are initiating financial discussions with someone who can´t distinguish between a nickel and $500, you need to stop doing that. If she´s bringing it up try to find something to say that will calm her down even if it isn´t true, since you won´t be able to have a rational discussion with her about it.
posted by yohko at 11:20 AM on December 2, 2008
If you are initiating financial discussions with someone who can´t distinguish between a nickel and $500, you need to stop doing that. If she´s bringing it up try to find something to say that will calm her down even if it isn´t true, since you won´t be able to have a rational discussion with her about it.
posted by yohko at 11:20 AM on December 2, 2008
First off, you have my sympathy and I hope that you can disengage yourself somehow.
Seconding yohko, it's not clear what you mean by "financial power of attorney." If you have power of attorney, it would enable you to make all the decisions. You wouldn't have to discuss the 5 cents or 5 dollars with her at all.
Generally speaking, a power of attorney (and, for example, the consent to buy the house mentioned above) is not valid when the consenter is incompetent to give it. This is not to say you've acted improperly, but from what you said, it may be possible for someone - say another relative - to challenge what you've done.
The usual way for you to obtain authority to manage your aunt's affairs would be to obtain a guardianship or conservatorship (different names in different states), as arnicae said. This gives you the authority of the court, not merely of your aunt. One of the websites above will have the details.
Sorry to say this, but you ought to check in with an elder-type lawyer or clinic who will at least confirm that you're safe with what you've done up to now.
posted by JimN2TAW at 12:06 PM on December 2, 2008
Seconding yohko, it's not clear what you mean by "financial power of attorney." If you have power of attorney, it would enable you to make all the decisions. You wouldn't have to discuss the 5 cents or 5 dollars with her at all.
Generally speaking, a power of attorney (and, for example, the consent to buy the house mentioned above) is not valid when the consenter is incompetent to give it. This is not to say you've acted improperly, but from what you said, it may be possible for someone - say another relative - to challenge what you've done.
The usual way for you to obtain authority to manage your aunt's affairs would be to obtain a guardianship or conservatorship (different names in different states), as arnicae said. This gives you the authority of the court, not merely of your aunt. One of the websites above will have the details.
Sorry to say this, but you ought to check in with an elder-type lawyer or clinic who will at least confirm that you're safe with what you've done up to now.
posted by JimN2TAW at 12:06 PM on December 2, 2008
Response by poster: Sorry, I wasn't clear on the financial thing. We have financial power of attorney - or rather, my brothers do - but we've been trying to discuss all purchases and use of money with my aunt. She's not entirely out of it; sometimes, she's completely there and it just feels wrong to go spending her money without consulting her.
This is probably something I have to get over, because it leads to conversations where I say, "You're paying the caregiver" and she says, "I'm not paying for that! I thought you were paying for her! I don't need her!" ad nauseam. Yes, I can then get my brother to cut a check to pay the caregiver, but then I feel guilty.
posted by mygothlaundry at 12:38 PM on December 2, 2008
This is probably something I have to get over, because it leads to conversations where I say, "You're paying the caregiver" and she says, "I'm not paying for that! I thought you were paying for her! I don't need her!" ad nauseam. Yes, I can then get my brother to cut a check to pay the caregiver, but then I feel guilty.
posted by mygothlaundry at 12:38 PM on December 2, 2008
Yes, I can then get my brother to cut a check to pay the caregiver, but then I feel guilty.
I was a live-in caretaker for my grandma for three years, a few years after she had a pretty bad stroke and was suffering from mild to moderate dementia. Probably the best advice I can give you is to get over the feeling guilty part. You're acting in good faith and spirit to protect and care for her, right?
Then don't let her make you feel guilty. You're working hard enough for her that you don't need or want that complicated burden. She may never appreciate what you're doing for her, but the people that love her will.
Don't haggle, don't argue, don't let her bog you down in the nitty gritty. Get her into a good routine of just trying to live life and try to fade the boring financial details out of her sight and spheres of influence.
It's... hard to get used to. I never thought that I'd end up being a caretaker for my grandma, much less did I ever imagine that I'd end up arguing with her about everything from finances to grocery shopping.
I never in my wildest dreams thought I'd have to physically prevent her from spraying bug spray all over the food in the pantry because of a few ants, nor did I ever imagine she'd actually try to hit me with a broom when I took the bug spray away and threw it outside into the bushes so I could continue cleaning the ants out of the pantry with good old soap and water without her bug-bombing me in an enclosed space filled with our food. *grumbles*
But then I also never imagined I'd have to deal with the emotional clusterfuck that occurs when living with and caring for a beloved relative while watching her mind just utterly break and slip away. It is easily one of the hardest things I've ever had to do with my life emotionally, mentally and physically.
So.
Part of the problem with dementia is that those suffering from it seem to be very disturbed by the loss of control over and in their own lives. I found it helped to engage my grandma in activities, whether it was helping plan the shopping list to choosing meals or engaging in extracurricular activities - or merely spending more time with her. One tactic I used was to ask her about family members or stories I'd heard before, or ask her questions about her life in general. It would get her talking and it seemed to activate underutilized areas of her mind/brain, it would keep her busy and sharp - and I was genuinely interested in hearing all of these stories.
Give your aunt something to control, while firmly taking control of the important stuff like bills, paying the caretaker, etc. If she's busy enough it will be easier to forget that she's not actually doing all those day-to-day mundane things like paying the phone bill.
Hang in there. You're doing the right thing.
posted by loquacious at 2:28 PM on December 2, 2008
I was a live-in caretaker for my grandma for three years, a few years after she had a pretty bad stroke and was suffering from mild to moderate dementia. Probably the best advice I can give you is to get over the feeling guilty part. You're acting in good faith and spirit to protect and care for her, right?
Then don't let her make you feel guilty. You're working hard enough for her that you don't need or want that complicated burden. She may never appreciate what you're doing for her, but the people that love her will.
Don't haggle, don't argue, don't let her bog you down in the nitty gritty. Get her into a good routine of just trying to live life and try to fade the boring financial details out of her sight and spheres of influence.
It's... hard to get used to. I never thought that I'd end up being a caretaker for my grandma, much less did I ever imagine that I'd end up arguing with her about everything from finances to grocery shopping.
I never in my wildest dreams thought I'd have to physically prevent her from spraying bug spray all over the food in the pantry because of a few ants, nor did I ever imagine she'd actually try to hit me with a broom when I took the bug spray away and threw it outside into the bushes so I could continue cleaning the ants out of the pantry with good old soap and water without her bug-bombing me in an enclosed space filled with our food. *grumbles*
But then I also never imagined I'd have to deal with the emotional clusterfuck that occurs when living with and caring for a beloved relative while watching her mind just utterly break and slip away. It is easily one of the hardest things I've ever had to do with my life emotionally, mentally and physically.
So.
Part of the problem with dementia is that those suffering from it seem to be very disturbed by the loss of control over and in their own lives. I found it helped to engage my grandma in activities, whether it was helping plan the shopping list to choosing meals or engaging in extracurricular activities - or merely spending more time with her. One tactic I used was to ask her about family members or stories I'd heard before, or ask her questions about her life in general. It would get her talking and it seemed to activate underutilized areas of her mind/brain, it would keep her busy and sharp - and I was genuinely interested in hearing all of these stories.
Give your aunt something to control, while firmly taking control of the important stuff like bills, paying the caretaker, etc. If she's busy enough it will be easier to forget that she's not actually doing all those day-to-day mundane things like paying the phone bill.
Hang in there. You're doing the right thing.
posted by loquacious at 2:28 PM on December 2, 2008
I had an elderly relative who we had to lie to about who was paying for nursing home care and how much it cost. I don´t recall at this point what explanation was given. She was a very thrifty lady and would have been shocked and upset to know the truth and insisted that she not be in the nursing home.
It sounds like she is insisting that the caregiver is not needed only due to the expense, that she accepts the caregiver if they are ¨free¨. Talk to her about how she wants to live her life, ask questions about if she would like to live in her own home or be in a nursing home, give her options on things she is capable of making a decision on, options on when to bathe, what to have for lunch, choice of outfits to wear, etc. Spend her money responsibly and with her preferences in mind, but if there is a necessary expense, don´t feel you need her permission to spend it.
The whole reason for having a financial power of attorney is so someone else can make these decisions. It´s not only for preventing the error of spending money recklessly, but also to prevent being so thrifty that she refuses to spend money on things she needs. Would it feel wrong to spend her money to buy her food and keep her heat on? It sounds like things have reached the point where her not having a live in caregiver would be neglect. It would be a criminal offense to let her go without care. There´s no deciding to give care or not give care, it must be done, and you can´t not do it because she thinks it´s too expensive.
She is not able to make a rational decision about this. Making this decision for her is something others need to do for her, just as others need to help her bathe and take her medications. That you are consulting her makes it sound like you are offering her a choice of having a professional caregiver, or not -- if the options are caregiver or nursing home, and you know which is the best option, you don´t have to keep asking her if she wants the caregiver.
posted by yohko at 2:34 PM on December 2, 2008
It sounds like she is insisting that the caregiver is not needed only due to the expense, that she accepts the caregiver if they are ¨free¨. Talk to her about how she wants to live her life, ask questions about if she would like to live in her own home or be in a nursing home, give her options on things she is capable of making a decision on, options on when to bathe, what to have for lunch, choice of outfits to wear, etc. Spend her money responsibly and with her preferences in mind, but if there is a necessary expense, don´t feel you need her permission to spend it.
The whole reason for having a financial power of attorney is so someone else can make these decisions. It´s not only for preventing the error of spending money recklessly, but also to prevent being so thrifty that she refuses to spend money on things she needs. Would it feel wrong to spend her money to buy her food and keep her heat on? It sounds like things have reached the point where her not having a live in caregiver would be neglect. It would be a criminal offense to let her go without care. There´s no deciding to give care or not give care, it must be done, and you can´t not do it because she thinks it´s too expensive.
She is not able to make a rational decision about this. Making this decision for her is something others need to do for her, just as others need to help her bathe and take her medications. That you are consulting her makes it sound like you are offering her a choice of having a professional caregiver, or not -- if the options are caregiver or nursing home, and you know which is the best option, you don´t have to keep asking her if she wants the caregiver.
posted by yohko at 2:34 PM on December 2, 2008
Your guilt is your issue, not your aunt's. Be sure you distinguish the two problems. Dementia brings many fears; loss of independence is something that all rational people fear. Could your fears about loss of independence be reflected in your interactions with your aunt? Not a question for me to answer; that's between you and your therapist.
Here is a form for a free subscription for a magazine for dementia caregivers. I was looking for this when I wrote my prior answer to you but I couldn't find it.
You're wonderful, by the way. Most family members turn away because they can't handle it. Your staying engaged is the absolute best thing you can do for your aunt, even if she is not able to express her appreciation in the usual ways.
posted by ikkyu2 at 7:22 PM on December 2, 2008
Here is a form for a free subscription for a magazine for dementia caregivers. I was looking for this when I wrote my prior answer to you but I couldn't find it.
You're wonderful, by the way. Most family members turn away because they can't handle it. Your staying engaged is the absolute best thing you can do for your aunt, even if she is not able to express her appreciation in the usual ways.
posted by ikkyu2 at 7:22 PM on December 2, 2008
This thread is closed to new comments.
There's little to be done to convince a demented person. Obstinacy is not rational; it is a personality trait, and those are rarely affected in dementia, even after the ability to rationalize their stubborn ideas is lost. I find that most obstinate demented people are still strenuously disagreeing with me even after they have forgotten what they are disagreeing with. This is what the conversation often looks like:
"Don't you think it's time to accept a caregiver into the home?"
"No! Certainly not! My beautiful home! I keep it up myself, it's lovely! And besides, I don't need help."
"What if you did, though?"
"I won't consider it! Really, young man, I don't think you know what you're talking about. And frankly, this conversation is over."
"Which conversation is that? What were are we talking about?"
"Why, ..." (mouth opens as if to speak, nothing comes out) "You should know that, young man! You are being quite impertinent." And so on. By the time they are done refusing they don't even remember what the issue is.
This can't be overcome. Luckily, when doing something against a demented person's will, they make extremely weak and ineffectual opponents. What are you worried about - that she's going to sue you to have the caregiver removed? Never happen. Just make the arrangements without consulting her. On move-in day, the caregiver is present.
If you need her to sign checks or similar, you're going to have to obtain a power of attorney. That will be a hassle.
posted by ikkyu2 at 9:22 AM on December 2, 2008