Aging parent, dementia, upcoming settlement - advice needed!
July 14, 2022 4:13 PM Subscribe
My 76 year old parent, diagnosed with dementia a couple of years ago, no debt, but bad financial decision-making history, doesn't like to plan. New twist: settlement money coming her way in a couple of weeks. Help!
Apologies up front if this is all over the place. I tried to make it as succinct as possible. And I also realize I should have posted this a few months ago...sigh..
Overview:
Mom is 76 years old. Retired at age 62. She is single/widowed and lives in her own apartment.
Early retirement decision was not a good one, not thought out, and she was nowhere near fiscally able to retire (i.e., no savings, no well-stocked retirement plan, etc.). She has been “getting by” since from her Social Security. She uses Medicare and pays for supplementary private health insurance.
She is mostly independent, able to feed herself (although horrible diet) and is not incontinent. She is mobile, although can walk for short distances. She STRONGLY prefers to live and be on her own. She wants to remain independent more than anything.
In the past few years, there has been a noticeable decline in cognitive ability. She has been going to a doctor regularly and was diagnosed with cognitive impairment, and then recently officially dementia. She has been prescribed medication for the cognitive issues. Her short term memory is very noticeably impacted. She does not attempt to cook. She forgets how to run microwave settings and simple radio buttons and functions (without serious struggle or having to ask how repeatedly to do it). She does not regularly take her daily medications when left on her own to manage it – especially living on her own. We can’t keep track of what she has taken and not taken since she constantly wants to and thinks she can control and manage that – she is constantly “re-arranging” her pill box.
In trying to prepare for a potential assisted living/nursing home situation, I found out recently that she is eligible for VA benefits since our father served decades ago during wartime. These benefits would be available to supplement paying for an assisted living type situation or nursing home.
However, when we’ve tried to discuss any of this with mom, it usually ends in an argument and/or escalated emotions – REGARDLESS of how gentle or caring we approach her about it. She does not believe that anything is wrong with her either physically or mentally. We’ve tried repeatedly to talk to her about it, obviously tried to make the topic “her idea” and what “she wants to do”, but we only get as far as “she is fine” and “why are you all worried about ME??”. We have to keep an eye out because she will take out cash, her debit card, and put it in her pocket, forget where she put it, stand there searching for it regardless of her environment or who is nearby. This makes us worry greatly since she could and would easily be a target – especially when/if she wants to go to a store on her own or walk to her bank ATM, etc. My siblings live in the same city, so they take her to the store, run errands, etc., when they go, but they are unable to do this on a daily basis or at her whim.
If there is any sign of talk about a nursing home or assisted living situation – regardless of how ‘nice’ a facility is – mom immediately gets defensive, shuts down and emphasizes that she is fine, healthy, and end of discussion (or it will end up heated).
Because of this history of escalation, we have not even told her yet that she is eligible for VA benefits because she gets very paranoid that we are all trying to “put her in a nursing home” (she would wonder why we had checked into VA benefits in the first place, etc.).
Part 2:
A few years ago, a sibling passed away in a supervised caretaker setting. We sued for wrongful death, case was recently settled with all of us named as equal claimants, which is how my mother asserted from the very beginning (my mother is primary).
In the interest of protecting the amount that will go directly to her, we have tried to prepare so that we are protecting this only asset she will have that will help make her remaining years of good quality. Her financial decisions through the years have not been wise, to say the least. When we try to discuss preparing for this, she borders on the paranoia that we want to control her and her money.
We know we NEED to do something. All she knows is that when the settlement comes, the financial “plan” is to just put the money in her checking account and withdraw as she desires. We have safety concerns - she does not keep a strong awareness of her surroundings and people.
Like I wrote before, she believes that she does not have anything cognitively wrong with her. She has switched doctors a couple of times because of the diagnoses they’ve made (the cognitive issues mostly) and she’s likely to run out of doctors in town at her rate! She gets huffy when we try to discuss “what ifs”. Needless to say, it’s frustrating for us since of course we want her to be safe, happy, and healthy.
Questions:
1. She lives on her own, has a bank account and frequently uses cash or debit card. If she were to deposit a check (which will be under $100K) from the settlement, and if “something happens” and she became incapacitated and unable to make decisions (e.g., stroke, heart attack, etc.), will all of that go to the State? How can we protect this money? We just want her to understand how serious and safe to approach this and also that it’s not an infinite amount of money, especially if not wisely managed.
2. One of my siblings is her medical POA (and getting THAT was a battle). Do we need a durable POA? Does a durable POA have rights over the State regarding her assets? What if we are ‘forced’ to put her into assisted living/nursing home? I am of the understanding that ALL assets in her name will go towards (or will NEED to go towards) the facility – regardless of any type of POA in place.
3. She is more likely to trust me and my spouse regarding financial decisions out of my siblings and me. If I’m able to “talk her into it”, should I get a separate bank/savings account under both of our names so that she could have access to that settlement, but I would also be able to monitor and get alerted at spending and withdrawals, etc.? Should it just be in MY name and give her access? Is that possible? If her name is on any account, I feel that would be fair game if it came down to a need for a facility.
4. If she applies for any type of benefits under some other type of senior program, do we have to disclose the wrongful death settlement?
Believe it or not, I paid $300 for an hour discussion with an elder care attorney in the state (Illinois), but we felt he did not provide very practical advice or next steps, so I’m leery of going that route again.
My siblings and I are prepared to keep our portions of the settlement at hand of course if things really go sideways with her, but we’d like for it NOT to go sideways. She has stayed with each of us temporarily (plus to see if it COULD work long-term) at different points in the last few years, but we all admit that none of us are capable of long-term living arrangement with her or our arrangements are just not suitable for other reasons for long term.
What am I missing?
Please provide any guidance or insight with any related experience – legal and otherwise.
Much appreciated in advance for any help and advice!
For what it's worth, she IS VERY HAPPY having her own apartment. She has made friends next door who she has coffee with every day.
Apologies up front if this is all over the place. I tried to make it as succinct as possible. And I also realize I should have posted this a few months ago...sigh..
Overview:
Mom is 76 years old. Retired at age 62. She is single/widowed and lives in her own apartment.
Early retirement decision was not a good one, not thought out, and she was nowhere near fiscally able to retire (i.e., no savings, no well-stocked retirement plan, etc.). She has been “getting by” since from her Social Security. She uses Medicare and pays for supplementary private health insurance.
She is mostly independent, able to feed herself (although horrible diet) and is not incontinent. She is mobile, although can walk for short distances. She STRONGLY prefers to live and be on her own. She wants to remain independent more than anything.
In the past few years, there has been a noticeable decline in cognitive ability. She has been going to a doctor regularly and was diagnosed with cognitive impairment, and then recently officially dementia. She has been prescribed medication for the cognitive issues. Her short term memory is very noticeably impacted. She does not attempt to cook. She forgets how to run microwave settings and simple radio buttons and functions (without serious struggle or having to ask how repeatedly to do it). She does not regularly take her daily medications when left on her own to manage it – especially living on her own. We can’t keep track of what she has taken and not taken since she constantly wants to and thinks she can control and manage that – she is constantly “re-arranging” her pill box.
In trying to prepare for a potential assisted living/nursing home situation, I found out recently that she is eligible for VA benefits since our father served decades ago during wartime. These benefits would be available to supplement paying for an assisted living type situation or nursing home.
However, when we’ve tried to discuss any of this with mom, it usually ends in an argument and/or escalated emotions – REGARDLESS of how gentle or caring we approach her about it. She does not believe that anything is wrong with her either physically or mentally. We’ve tried repeatedly to talk to her about it, obviously tried to make the topic “her idea” and what “she wants to do”, but we only get as far as “she is fine” and “why are you all worried about ME??”. We have to keep an eye out because she will take out cash, her debit card, and put it in her pocket, forget where she put it, stand there searching for it regardless of her environment or who is nearby. This makes us worry greatly since she could and would easily be a target – especially when/if she wants to go to a store on her own or walk to her bank ATM, etc. My siblings live in the same city, so they take her to the store, run errands, etc., when they go, but they are unable to do this on a daily basis or at her whim.
If there is any sign of talk about a nursing home or assisted living situation – regardless of how ‘nice’ a facility is – mom immediately gets defensive, shuts down and emphasizes that she is fine, healthy, and end of discussion (or it will end up heated).
Because of this history of escalation, we have not even told her yet that she is eligible for VA benefits because she gets very paranoid that we are all trying to “put her in a nursing home” (she would wonder why we had checked into VA benefits in the first place, etc.).
Part 2:
A few years ago, a sibling passed away in a supervised caretaker setting. We sued for wrongful death, case was recently settled with all of us named as equal claimants, which is how my mother asserted from the very beginning (my mother is primary).
In the interest of protecting the amount that will go directly to her, we have tried to prepare so that we are protecting this only asset she will have that will help make her remaining years of good quality. Her financial decisions through the years have not been wise, to say the least. When we try to discuss preparing for this, she borders on the paranoia that we want to control her and her money.
We know we NEED to do something. All she knows is that when the settlement comes, the financial “plan” is to just put the money in her checking account and withdraw as she desires. We have safety concerns - she does not keep a strong awareness of her surroundings and people.
Like I wrote before, she believes that she does not have anything cognitively wrong with her. She has switched doctors a couple of times because of the diagnoses they’ve made (the cognitive issues mostly) and she’s likely to run out of doctors in town at her rate! She gets huffy when we try to discuss “what ifs”. Needless to say, it’s frustrating for us since of course we want her to be safe, happy, and healthy.
Questions:
1. She lives on her own, has a bank account and frequently uses cash or debit card. If she were to deposit a check (which will be under $100K) from the settlement, and if “something happens” and she became incapacitated and unable to make decisions (e.g., stroke, heart attack, etc.), will all of that go to the State? How can we protect this money? We just want her to understand how serious and safe to approach this and also that it’s not an infinite amount of money, especially if not wisely managed.
2. One of my siblings is her medical POA (and getting THAT was a battle). Do we need a durable POA? Does a durable POA have rights over the State regarding her assets? What if we are ‘forced’ to put her into assisted living/nursing home? I am of the understanding that ALL assets in her name will go towards (or will NEED to go towards) the facility – regardless of any type of POA in place.
3. She is more likely to trust me and my spouse regarding financial decisions out of my siblings and me. If I’m able to “talk her into it”, should I get a separate bank/savings account under both of our names so that she could have access to that settlement, but I would also be able to monitor and get alerted at spending and withdrawals, etc.? Should it just be in MY name and give her access? Is that possible? If her name is on any account, I feel that would be fair game if it came down to a need for a facility.
4. If she applies for any type of benefits under some other type of senior program, do we have to disclose the wrongful death settlement?
Believe it or not, I paid $300 for an hour discussion with an elder care attorney in the state (Illinois), but we felt he did not provide very practical advice or next steps, so I’m leery of going that route again.
My siblings and I are prepared to keep our portions of the settlement at hand of course if things really go sideways with her, but we’d like for it NOT to go sideways. She has stayed with each of us temporarily (plus to see if it COULD work long-term) at different points in the last few years, but we all admit that none of us are capable of long-term living arrangement with her or our arrangements are just not suitable for other reasons for long term.
What am I missing?
Please provide any guidance or insight with any related experience – legal and otherwise.
Much appreciated in advance for any help and advice!
For what it's worth, she IS VERY HAPPY having her own apartment. She has made friends next door who she has coffee with every day.
IANYL. Etc.
Depending on your jurisdiction, if she has a diagnosis of dementia, you may be able to go to a court and get a conservatorship. She already isn't capable of managing her own affairs, if what you says is true about her medical condition. Do you have copies of any of her medical diagnoses? With a Medical POA your sibling may be able to get some documents, although your mother might need to approve it.
If you do so, you can take full control over her finances, while simultaneously maintaining her a certain level of access to them. (Set up two accounts: one she has an ATM for, one she doesn't.)
If that's not feasible: Can you get her to sign a trust or POA? Will she accept the argument that "If something happens to you I need to be able to pay for things"?
Is she opposed to having help come in? That might address some of your safety concerns while keeping her out of any form of institutionalized care.
I'm sorry you had a bad experience with a lawyer, but you need a lawyer. And a consultation with an eldercare manager who has experience with demented seniors. There may be a county-level agency who could hook you up.
posted by suelac at 4:34 PM on July 14, 2022 [5 favorites]
Depending on your jurisdiction, if she has a diagnosis of dementia, you may be able to go to a court and get a conservatorship. She already isn't capable of managing her own affairs, if what you says is true about her medical condition. Do you have copies of any of her medical diagnoses? With a Medical POA your sibling may be able to get some documents, although your mother might need to approve it.
If you do so, you can take full control over her finances, while simultaneously maintaining her a certain level of access to them. (Set up two accounts: one she has an ATM for, one she doesn't.)
If that's not feasible: Can you get her to sign a trust or POA? Will she accept the argument that "If something happens to you I need to be able to pay for things"?
Is she opposed to having help come in? That might address some of your safety concerns while keeping her out of any form of institutionalized care.
I'm sorry you had a bad experience with a lawyer, but you need a lawyer. And a consultation with an eldercare manager who has experience with demented seniors. There may be a county-level agency who could hook you up.
posted by suelac at 4:34 PM on July 14, 2022 [5 favorites]
Agree that it is time to get her declared incompetent and create a guardianship/ conservatorship where a family member controls all her finances. She could have her own bank account with a limited amount of money in it that you allow her to spend as she sees fit.
Obviously you want the best for your mom, but the fact is, she is only going to get less capable as time goes on, so it's best to get things locked down before she makes expensive mistakes you can't fix. Good luck. This is hard.
posted by mmf at 5:00 PM on July 14, 2022 [3 favorites]
Obviously you want the best for your mom, but the fact is, she is only going to get less capable as time goes on, so it's best to get things locked down before she makes expensive mistakes you can't fix. Good luck. This is hard.
posted by mmf at 5:00 PM on July 14, 2022 [3 favorites]
I'm sorry. This is so terrible for everyone involved. You really need to speak to a (competent!) lawyer. I'm going to sketch a couple things out for you, but please do not rely on this in taking any actions.
Medicaid, not Medicare, pays for nursing home care for the indigent in the U.S. The asset limit for Medicaid in Illinois is only $2000. There are some exclusions, but not any that would obviously apply to her checking account. (There is also a five-year lookback period, so it is most likely too late for your mother to transfer any assets elsewhere.) So your mother will not initially qualify for Medicaid. Instead, you will need to be paying for whatever facility she does go to with her assets. This is appropriate. Your mother is not destitute. Once she has exhausted her assets, assuming her income is below that (fairly low) maximum (which would include both Social Security and any VA cash benefit), then Medicaid will kick in, but of course any facility she is in will have to take it.
Again, this really requires careful and state-specific planning. There is often some tinkering around the edges that can (and should) be done to make sure a person gets all the benefits they're entitled to, but, again, if your mother has money to pay for her care, she should be paying for her care.
posted by praemunire at 5:07 PM on July 14, 2022 [1 favorite]
Medicaid, not Medicare, pays for nursing home care for the indigent in the U.S. The asset limit for Medicaid in Illinois is only $2000. There are some exclusions, but not any that would obviously apply to her checking account. (There is also a five-year lookback period, so it is most likely too late for your mother to transfer any assets elsewhere.) So your mother will not initially qualify for Medicaid. Instead, you will need to be paying for whatever facility she does go to with her assets. This is appropriate. Your mother is not destitute. Once she has exhausted her assets, assuming her income is below that (fairly low) maximum (which would include both Social Security and any VA cash benefit), then Medicaid will kick in, but of course any facility she is in will have to take it.
Again, this really requires careful and state-specific planning. There is often some tinkering around the edges that can (and should) be done to make sure a person gets all the benefits they're entitled to, but, again, if your mother has money to pay for her care, she should be paying for her care.
posted by praemunire at 5:07 PM on July 14, 2022 [1 favorite]
Before you speak to a lawyer again, you might see if you can find a state or county senior services department where you can talk to a social worker. You may also want to reach out to your mom's doctor, who cannot discuss her personal health information without her permission (so honestly it would be best if you could go to the doctor with her as well, sooner rather than later, so the three of you can have a conversation together) but who may be able to make a note of your concerns and provide you with a reference to someone who can give you general information about what next steps to consider.
You're going to have to force her into care eventually, and she's going to be very angry at you. Cognitively it is very unlikely that she will recognize her own decline, at best something might happen that scares her so bad she changes her mind without actually harming anyone, but that is not generally how that goes down. She may or may not get over having this done to her, though she may forget eventually. This isn't going to feel good but neither will her burning down the apartment complex or ending up on the street.
posted by Lyn Never at 5:11 PM on July 14, 2022 [3 favorites]
You're going to have to force her into care eventually, and she's going to be very angry at you. Cognitively it is very unlikely that she will recognize her own decline, at best something might happen that scares her so bad she changes her mind without actually harming anyone, but that is not generally how that goes down. She may or may not get over having this done to her, though she may forget eventually. This isn't going to feel good but neither will her burning down the apartment complex or ending up on the street.
posted by Lyn Never at 5:11 PM on July 14, 2022 [3 favorites]
When my mom's health was declining she was happy for me to take over some stuff (like paying bills), but didn't like talking about the "what ifs".
One way I was able to make inroads was by expressing solidarity with her and reiterating what I already knew about her preferences, then framed the need for support as a future possibility. This gave her reassurance that I understood her wishes and also gave her some agency.
My script was roughly: "I love you and want to support you the best I can. This is really hard because nobody likes to talk about this stuff. But it's important to us kids that these last stages of your life give you as much independence and dignity as possible. We know you want to keep living independently and we want that for you as well. But if for some reason you can't live on your own safely, how would you like us to handle it? What would be your preferences?"
Unless they have friends who have moved into facilities, a lot of folks in that generation think the only option is a smelly nursing home. Knowing what is actually available in your area in terms of home health nurses, assisted living, small group homes, etc will help structure the conversation(s), so definitely follow the upthread advice on reaching out to local/state agencies for info and resources.
It also helped to eventually take mom on a tour of couple of facilities based given her financial situation and needs.
I would also suggest a family meeting sans your mom to make sure everyone is on the same page. This is a tough stage for all involved - clear communication helps.
posted by jenquat at 5:32 PM on July 14, 2022 [4 favorites]
One way I was able to make inroads was by expressing solidarity with her and reiterating what I already knew about her preferences, then framed the need for support as a future possibility. This gave her reassurance that I understood her wishes and also gave her some agency.
My script was roughly: "I love you and want to support you the best I can. This is really hard because nobody likes to talk about this stuff. But it's important to us kids that these last stages of your life give you as much independence and dignity as possible. We know you want to keep living independently and we want that for you as well. But if for some reason you can't live on your own safely, how would you like us to handle it? What would be your preferences?"
Unless they have friends who have moved into facilities, a lot of folks in that generation think the only option is a smelly nursing home. Knowing what is actually available in your area in terms of home health nurses, assisted living, small group homes, etc will help structure the conversation(s), so definitely follow the upthread advice on reaching out to local/state agencies for info and resources.
It also helped to eventually take mom on a tour of couple of facilities based given her financial situation and needs.
I would also suggest a family meeting sans your mom to make sure everyone is on the same page. This is a tough stage for all involved - clear communication helps.
posted by jenquat at 5:32 PM on July 14, 2022 [4 favorites]
Re lawyers: as you've observed they are not always helpful. I like the idea of calling the local agency for aging/elder services/social services for seniors and seeing what advice they offer or connect you too first. Your local library might also be a good place to call for referrals to supportive agencies. Not that those agencies are likely to be super helpful, but they will also help you narrow down to a set of specific questions and tasks you may have to then pay for out of pocket. Doing more research about the Medicaid rules described above, reading about power of attorney works etc FIRST will help clarify if you want to a hire a lawyer and what specific task you would be asking them to do.
posted by latkes at 5:52 PM on July 14, 2022 [2 favorites]
posted by latkes at 5:52 PM on July 14, 2022 [2 favorites]
Yes, please talk with a different lawyer. Your mom has a dementia diagnosis; look into getting a guardianship and putting her portion of the settlement in a trust to go toward her care. Call the VA and talk through her options; one of the surviving-spouse benefits, Aid and Attendance, "provides supplemental income for eligible veterans and surviving spouses who are receiving senior care either at home or at a senior living facility."
posted by Iris Gambol at 5:53 PM on July 14, 2022 [3 favorites]
posted by Iris Gambol at 5:53 PM on July 14, 2022 [3 favorites]
IMO you should get financial ownership for this fairly quickly. My FIL drove his other daughter around the block less than 6 months ago, in a moment of clarity finally realizing he had dementia, and today he fought my wife and the hospice nurse giving him a bath because he didn't know who they were. He does still have moments of clarity, but dementia can strike quickly and they can become really ornery, angry, and violent. He's gotten far worse in the two months we've been with her family helping out.
Sorry but it really sucks.
posted by The_Vegetables at 6:41 PM on July 14, 2022 [1 favorite]
Sorry but it really sucks.
posted by The_Vegetables at 6:41 PM on July 14, 2022 [1 favorite]
Just to make it is clear that a regular Power of Attorney (POA) gives the POA the power to act on behalf of the person signing it. It does not take away the right of the person to make their own decisions. The POA powers stop immediately on the death of the person and it has no impact what happens to their assets after death. That is determined by the will and carried out by an executor who has operating under the authority of the will, entirely separate from a POA.
Your mother might not have the capacity of create a POA - one has to be of "sound mind". If she's not, then the only option to go before a judge and have her declared incompetent and to create guardianship. At that point, your mother does lose her legal right to enter into agreements on her own behalf, only the guardian can do that.
It is probably too late for your mother but for anyone else reading this, there is a good argument for creating a POA early since it allows the person with POA powers to fill in and support the person authorizing it - it doesn't take away their own powers but allows the POA to just as much as is needed and to smoothly step in to do more as needed. Furthermore there are no doctors or judges involved and the bad feelings involved in arguing if someone is incompetent.
posted by metahawk at 7:55 PM on July 14, 2022 [1 favorite]
Your mother might not have the capacity of create a POA - one has to be of "sound mind". If she's not, then the only option to go before a judge and have her declared incompetent and to create guardianship. At that point, your mother does lose her legal right to enter into agreements on her own behalf, only the guardian can do that.
It is probably too late for your mother but for anyone else reading this, there is a good argument for creating a POA early since it allows the person with POA powers to fill in and support the person authorizing it - it doesn't take away their own powers but allows the POA to just as much as is needed and to smoothly step in to do more as needed. Furthermore there are no doctors or judges involved and the bad feelings involved in arguing if someone is incompetent.
posted by metahawk at 7:55 PM on July 14, 2022 [1 favorite]
IANAL/IANYsocial worker, and I’m so sorry you’re going through this. I would strongly suggest trying to get DPOA for finances before attempting the conservatorship process, which is stressful, time consuming, and expensive, and does actual remove your mom’s decision making power, which DPOA does not, as someone else pointed out above.
I’d take a non-confrontational approach rather than trying to debate or give a detailed explanation. “We are all going to do POA documents this weekend, in case we are hit by lighting or something.” Or, “hey when we did that medical POA for you with Sibling, we forgot to do the financial part! Let’s take care of that this week.” Don’t mention the VA benefits, anything to do with her current or future care needs, or her diagnosis—this is really something anyone her age should have in place, and you should treat it as a normal piece of business.
The Alzheimer’s Association has good resources for these conversations, and you can also call them to discuss these sorts of situations at greater length.
posted by assenav at 8:25 PM on July 14, 2022 [5 favorites]
I’d take a non-confrontational approach rather than trying to debate or give a detailed explanation. “We are all going to do POA documents this weekend, in case we are hit by lighting or something.” Or, “hey when we did that medical POA for you with Sibling, we forgot to do the financial part! Let’s take care of that this week.” Don’t mention the VA benefits, anything to do with her current or future care needs, or her diagnosis—this is really something anyone her age should have in place, and you should treat it as a normal piece of business.
The Alzheimer’s Association has good resources for these conversations, and you can also call them to discuss these sorts of situations at greater length.
posted by assenav at 8:25 PM on July 14, 2022 [5 favorites]
By the standards of our system, she would actually be ok to live on her own for a while longer *with supports* (here they call it “aging in place”).
For example, medications could be put into a blister pack by the pharmacy, and dispensed by a personal support worker. Assuming the money piece gets sorted out, perhaps you could pay someone you think she’d get along with to visit mornings and evenings for meds and meals, and someone else to come twice a month to clean. You could install cameras (we use Wyze) to check in on her, and equip her with a GPS that gets charged by the PSW. Clear the home of any hazards, senior-proof it, with the help of an occupational therapist…
She’s still mobile, still social. Those two things alone can keep her going healthier for longer than institutionalization (which on its own, even when staffing ratios are good which they often aren’t, can hasten decline and even precipitate delirium on top of dementia, search for “hospital induced delirium”). Decline will happen, and I’m not saying you shouldn’t plan for a home, but it could be that she’ll plateau where she is for a while. The fact that you have siblings in the area who see her frequently would lend support to this kind of plan, as she won’t be totally alone, they’ll be on the alert for changes.
The idea would be to use her money to keep her where she wants to be until it runs out or things get sharply worse or more dangerous, then go for the home (at which point persuading her might not even be necessary).
(Am I understanding you correctly, and my apologies if not - did your sibling actually die while in a home? One could certainly understand your mom’s reluctance, if so…)
posted by cotton dress sock at 9:09 PM on July 14, 2022 [6 favorites]
For example, medications could be put into a blister pack by the pharmacy, and dispensed by a personal support worker. Assuming the money piece gets sorted out, perhaps you could pay someone you think she’d get along with to visit mornings and evenings for meds and meals, and someone else to come twice a month to clean. You could install cameras (we use Wyze) to check in on her, and equip her with a GPS that gets charged by the PSW. Clear the home of any hazards, senior-proof it, with the help of an occupational therapist…
She’s still mobile, still social. Those two things alone can keep her going healthier for longer than institutionalization (which on its own, even when staffing ratios are good which they often aren’t, can hasten decline and even precipitate delirium on top of dementia, search for “hospital induced delirium”). Decline will happen, and I’m not saying you shouldn’t plan for a home, but it could be that she’ll plateau where she is for a while. The fact that you have siblings in the area who see her frequently would lend support to this kind of plan, as she won’t be totally alone, they’ll be on the alert for changes.
The idea would be to use her money to keep her where she wants to be until it runs out or things get sharply worse or more dangerous, then go for the home (at which point persuading her might not even be necessary).
(Am I understanding you correctly, and my apologies if not - did your sibling actually die while in a home? One could certainly understand your mom’s reluctance, if so…)
posted by cotton dress sock at 9:09 PM on July 14, 2022 [6 favorites]
Response by poster: Wow, thank you all so much. @cotton dress sock - sibling died in a mental hospital.
posted by foxhat10 at 5:30 AM on July 15, 2022
posted by foxhat10 at 5:30 AM on July 15, 2022
Very sorry for your loss… that is heartbreaking…
Wishing you strength as you navigate this.
posted by cotton dress sock at 6:59 AM on July 15, 2022 [1 favorite]
Wishing you strength as you navigate this.
posted by cotton dress sock at 6:59 AM on July 15, 2022 [1 favorite]
Some excellent advice here. I just wanted to add that with my father and his slow dementia decline, I spent a lot of time supporting him with taxes, bill-paying, and online account maintenance and general financial tasks over many years. At first he was resistant and self defensive about help, but we kind of went on a 'you do, I help' to 'we do together' to a "I do, you help' journey, until I was gradually doing everything. He never admitted to his loss of cognition, but eventually his dementia made it so that dealing with numbers in any way was overwhelming and he was happy for me to do it. We let him keep his debit card, but made sure the amount he could access was limited.
For meds, we had no good solutions until we got home health in, but that was costly, given they had a 2 hour minimum for each visit. When he finally went to assisted living, that solved the problem. We worked with his doctors to minimise his meds, given he frequently forgot to take them. The blister/Webster pack idea is a good one.
For the difficult conversations, I found that they always had to be had (at least) three times. The first time was *always* combative, the second time still combative, but perhaps exploring the challenge in different ways or in a different context, and the third time usually resulted in him reluctantly agreeing. It helped me to know I was going to have to have the conversation at least three times; I was better able to hold a calm demeanor during the first, combative encounter. I think that staying rational, and repeating things in a "this is what needs to happen" or "here's how we will deal with this" tone of gentle authority is key. It's really hard to play the role of adult against your declining parent.
posted by amusebuche at 8:09 PM on July 15, 2022 [3 favorites]
For meds, we had no good solutions until we got home health in, but that was costly, given they had a 2 hour minimum for each visit. When he finally went to assisted living, that solved the problem. We worked with his doctors to minimise his meds, given he frequently forgot to take them. The blister/Webster pack idea is a good one.
For the difficult conversations, I found that they always had to be had (at least) three times. The first time was *always* combative, the second time still combative, but perhaps exploring the challenge in different ways or in a different context, and the third time usually resulted in him reluctantly agreeing. It helped me to know I was going to have to have the conversation at least three times; I was better able to hold a calm demeanor during the first, combative encounter. I think that staying rational, and repeating things in a "this is what needs to happen" or "here's how we will deal with this" tone of gentle authority is key. It's really hard to play the role of adult against your declining parent.
posted by amusebuche at 8:09 PM on July 15, 2022 [3 favorites]
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Over the 10 year process I mentioned above, I hid my mother's car keys then got rid of the car. I logged her out of her email so she couldn't keep donating to the various causes that reached out, then got her a pre-paid debit card with a daily spending limit and hid her other accounts from her. I moved her to a facility (with my dad's involvement and agreement) that she did not want to go to. I tried hard to respect her agency and autonomy but it was impossible to do so to her satisfaction because she did not desire any of the interventions that were needed to protect her safety, or the safety of others around her. So every caregiving measure I provided was met with hurt, hostility, or eventually when she became non-verbal, pinching and hitting.
Yes get financial power of attorney as soon as you can. Yes USE the medical power of attorney you already have and get the doctor to issue a letter saying she does not have capacity. Yes start just making decisions for her.
Don't argue, don't remind her or tell her she's impaired, don't hesitate to tell half truths or exclude hurtful or potentially dangerous information. Be agreeable whenever you can, redirect, and do what you need to do to keep everyone safe and maintain your sanity in the kindest way you can.
I don't know, it's all kind of a lot to cover in a comment here. I am happy to do a call or message me if you want to talk more off line.
I'm really sorry. Maybe some Nolo Press materials might be of use.
posted by latkes at 4:33 PM on July 14, 2022 [24 favorites]