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any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: mattkime
Date: May 09, 2022 10:05PM
Overall, my father in law is doing quite well but his memory is fading. He's in his late 80s so its not surprising that he's lost a step but the problem is that he doesn't want to admit to it. He's bounced two rent checks in the past couple months and at one point stated that he thought someone was siphoning off funds (which we doubt) but he's unwilling to let any family members take a look at his finances. He's gotten lost a few times on familiar routes and its becoming a more common occurrence. The trajectory on these matters is clear.

My mother in law is still relatively mentally sharp but for various reasons she never really was in charge of these sorts of things. She wants him to accept help but is as powerless as anyone to get him to change his mind.

My sister in law is their primary care taker and she's trying to get him to see a memory care specialist. She got him there one where he denied having memory problems despite getting lost earlier that day. There are moments when he admits to having a fading memory but at any mention of a doctor he insists he's perfectly fine. We think he distrusts family members to look after his finances, some of which is earned. That said, figuring out a good working relationship isn't hard if the willingness is there.

He was always the healthy one but somewhere along the way the claim became increasingly hollow. My sister in law has medical power of attorney - I should really pick her brain about that more. Anyway, it seems that he wants to maintain the narrative to health despite any evidence to the contrary.

Its become clear to me that its often not what your limitation is but how you deal with it. He's not compensating well.

However, he does live in a retirement center that can also provide long term care. He chose to move there out of concern for his wife - who does have considerable health problems - but he might need care before she does.

Anyway, any advice for dealing with someone with dementia who's not ready to admit it?



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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: Acer
Date: May 09, 2022 10:13PM
I would definitely look at that medical power of attorney. It's really good that is in place already, given your parent's growing dementia-related distrust. That said, a brief reading says it's intended to go into effect when the subject is incapacitated. It's not clear to me how that is determined in dementia cases (as opposed to say, coma) which is why you should look into it to see what options you have there.
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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: lost in space
Date: May 09, 2022 10:13PM
mattkime,


I don't have any advice for you but I am sorry to hear your family is going through this. We went through my mother's dementia and the road was difficult for all of us even though she was cooperative. Thank god he's already in a facility. Take care of yourselves.







Edited 1 time(s). Last edit at 05/09/2022 10:14PM by lost in space.
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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: mattkime
Date: May 09, 2022 10:33PM
I should add that the only thing I'm certain of at this point is that honesty and maintaining trust are the most important things at stake here.
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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: Drew
Date: May 09, 2022 10:56PM
Can any of you have a face to face, one on one conversation with your father? My dad, the strong leader of our family and in fact his whole clan for so many years, had Parkinson's related dementia. But he was able to admit to his limitations with a face to face cup of coffee with my older brother. Together, they decided on some good ideas, such as the ability to check on the financial details. The conversation was a two men working together kind of talk, not one telling the other what to do. Anyway, it worked (pretty well) for us. I can feel your pain, as I'm sure many here can.
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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: anonymouse1
Date: May 09, 2022 10:58PM
mattkime, that sounds really rough. And your FIL is luck to have you on his side.

There are consultants, usually licensed clinical social workers, who specialize in stuff like this. Same thing for lawyers. It would probably be worthwhile to consult with one or both.

What it comes down to his how hard you're willing to push, and what fallout you're willing to deal. If you're willing to force it, it sounds like you're talking about some kind of conservatorship, but if he's not willing to go along with it, you're going to have to do a lot of stuff he will likely find humiliating.

Also, what outcome do you want? Is he still driving? What is it that you want him to do or stop doing?
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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: mattkime
Date: May 09, 2022 11:09PM
Quote
Drew
Can any of you have a face to face, one on one conversation with your father?

A number of those have occurred without meaningful progress. There are moments where he's more agreeable to accept help but thats been quickly forgotten.

Quote
anonymouse1
What is it that you want him to do or stop doing?

We want to be able to review his finances. We feel that in so many words he's expressed a lack of control (the invention of someone taking money from him) but somehow he's more worried about losing control to a family member.



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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: Blankity Blank
Date: May 09, 2022 11:11PM
Denial and dementia go together like ham and eggs; just natural pairing.

With our mom, we took a multipronged approach.

Used a ‘well let’s cross this off the list/get to the bottom of this once and for all” approach to bringing in a neurologist to do tests, including a brain scan, so there were black and white, hard facts on the table.

Also worked with a therapist for a short while to help acclimate to the reality of having “memory issues” (dementia). And once the rubicon of getting dementia out in the open was crossed (even with sporadic denial still going on) engaging with counselors at the Alzheimer’s Association was a godsend for all of us. Their resources and counseling were life and sanity savers.

The one thing we found to be absolutely critical was to understand that as caretakers, there is no ‘winning’. You manage and guide. You don’t argue/insist that it’s ridiculous someone is stealing their printer ink, you help find the other ways it might have ‘disappeared’. It’s playing diplomat between their fears, worries and anger, and the real world.

You accept there’s going to be bad days and better days.

Some things, of course, ultimately can’t be negotiated or even softened as much as one might wish. Driving, financial issues, medical issues.

Our mom never ‘admitted’ she had dementia, and that was okay. The real goal is living with it, not necessarily speaking it’s name, as if that were some vital part of battling the dragon.



National Suicide Prevention Hotline tel:1-800-273-8255

I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.
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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: Markintosh
Date: May 09, 2022 11:33PM
My pops is 87 and going on about 8 years into dementia...it is NOT easy.

• In CA, I filled out a form with the DMV about my dads condition. I also had his physician fill out the same request. The DMV sent a notice requiring my dad to come in for a driving test and he failed. This got him off the road. His car sits in the driveway and keys in a safe deposit box. I also removed the battery, just in case. He can't figure out the push button start on my stepmothers newer car.

For many things, we accepted that some bad things were going to have to happen to get him decide to accept help.

• He is overweight and Type 2 diabetic. For a while, my stepmother purposely did not monitor his diet or medications. His weight ballooned and he immediately got scared about the increasing neuropathy. He agreed to let my stepmother supervise diet, medications and appointments.

• He used to carry 5 credit cards. We removed one every couple of weeks, but made sure he always had enough cash on hand to pay for lunch or dinner. Eventually he was left with only one VISA card that was expired. After being declined a few times and needing rescue by my mother in law, he agreed to let her always pay. She had to let his cell phone plan lapse twice and the house electricity shut off once before he agreed to let her handle all of the bills. They need convincing.

Unfortunately, it's getting to a point where she can't really handle him anymore. He doesn't want to go to a care facility, and my stepmother is terrified to be alone. Neither wants to talk to a therapist or social worker about what to do. Beyond the dementia, the neuropathy has gotten very bad. I fear my dad is going to have to take a bad fall or something before either of them accept any sort of change.

This is not easy.



“Live your life, love your life, don’t regret…live, learn and move forward positively.” – CR Johnson
Loving life in Lake Tahoe, CA
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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: Wags
Date: May 10, 2022 01:07AM
Is there anyone that he trusts and respects, but somewhat separate from the family dynamics, like clergy or old friend? Seems like your MIL will have to take on more responsibility, perhaps with sister-in-law in support. I went through similar issues when my mother was diagnosed with vascular dementia. She was living alone after my father passed. Things came to a head when she fell in the tub and laid there most of the day until luckily the neighbor dropped by.

Golden Years, sure.
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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: Diana
Date: May 10, 2022 02:12AM
I feel your pain. Here’s my story, perhaps you can glean a few ideas from it.

My mom is in similar straits. She’s 84, and forgetting things. She has been getting worse since my dad passed away in 2009. I’ve been going to her doctors appointments with her—as she tells me, I’m her memory. Translation: I remember what the doctor said, and what he wants. I make sure she goes for whatever testing that is needed. I translate for her, not that she doesn’t understand English (it’s her native tongue) but she won’t ask the doctor to explain something in language she understands and that becomes my function. I can’t tell you the number of times she has looked at me and asked me what I would do if it were me. I tell her, but I also tell her that I’m not her and leave it to her to make the final decision. She still has agency, even if in a diminished capacity. This means that if she refuses a test or a procedure then it’s her decision, even if it isn’t in her best interests. Fear drives a good part of it.

After we found that she was forgetting and missing her scheduled medications we got her a pill dispensing machine: the “robot”, as my brother calls it. It dispenses the pills at specified times, and loudly announces it’s time for her to take her meds. Wasn’t cheap. I can monitor the medication levels through the web, and it notifies me if she doesn’t at least open the door and take the pills out. Unfortunately there is no mechanism to ensure she takes them at that time. She’s on a few drugs that she needs to take consistently, but again “agency”.

For anyone asking why doesn’t she live with me: she doesn’t like my significant other (she’s managed to alienate most everyone around her, including family) and bringing her into my house means he would have to go as she would drive him out and then loudly exclaim that he just doesn’t like her. I’d have to get rid of the cats as well (“allergic!”). There are other issues. Let me just say this: it would not be good, and I don’t choose to put myself through it.

Continuing: There are times she forgets she has an appointment. She is having increasing difficulty in using the calendar on her phone, which was being used as a coping mechanism to remind her of things she had scheduled. She’s locked herself out of her iPad… her Watch, her iPhone… technology is becoming even more difficult recently and it required a trip to the Apple Store so they could advise her as to what needed done. (The Watch needed a new battery; the iPhone has its battery replaced about a year ago and it’s open background apps that is eating the battery; the iPad locked her completely out and required a restore.) My brother took the car away from her, which has been both a nightmare and a blessing. She had gotten lost a few times, even with GPS and Maps on her phone. Nothing like getting a call with the question “Where am I?” There is NO car in the parking lot; she doesn’t have car keys. If it was still there, she would drive and just not tell anyone. She’s scary behind the wheel! She wants to live in a house and not an apartment, but she needs people around her. She finally put me on her accounts at the bank. It took quite some time for her to get comfortable enough with the idea that I could be on it and still not want to spend her money. Her bills have all been set up automatically with bill pay; she writes a check for rent. It gives her a measure of control, but also the relief of knowing that the bills are paid.

About 6 years ago or more, she wound up in the hospital due to pneumonia. Subsequently she developed hospital acquired delirium, and it was only by total agreement between all the kids and a conference call from the other side of the world (AND a most understanding nurse) we were able to make some decisions in regard to her care while she was “out”. I talked her into allowing for a medical power of attorney when she came to her senses and realized how long she was “gone” and the problems we had making decisions for her.

The biggest issue she has concerning her increasing dementia is fear: the fear that if she says something about it they will think she’s crazy lock her into the loony bin and throw away the key. In fact, that was one of her questions concerning the medical PoA: was it something that allowed for us to declare her incompetent, and it took a few explanations of how it works and what it does; it would take a court order to find her mentally incompetent and that wasn’t going to happen. It only comes into effect when she isn’t able to make decisions regarding her care.

Her coping mechanisms are failing, and there are few options. She also refuses to acknowledge the problems most days; occasionally she sees the issues, but the next day it’s like it never happened. The sentiment that you manage is a good one. And no, there is no “winning”. I just have to remember that for someone who held onto control as long and as tightly as she has, the possibility of losing control in any way terrifies her.

Sorry for the length of this post. Hopefully it may give you a few ideas that may help alleviate your FIL’s anxiety and help all the way around; perhaps some of the failures help you to avoid some of the pits I’ve had to climb out of. They’ve been kinda deep, and often muddy.
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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: RgrF
Date: May 10, 2022 03:15AM
A few years back I succame to a MERA generated fever. It was such that in a delirium I either refused to acknowledge or didn't know I was in a delirious fever until I collapsed.

Hospital diagnosed MERSA infection in both the lumbar and (artificial ) knee and treated both. Took 4 months on my back treatment before I went home in a wheelchair, another 2 months before they replaced the knee.

How this relates to the thread is that since that time (2017 or so) I've had memory holes. Holes where an entire time frame has disappeared, those holes have evolved to become blanks. At a family gathering last night during a word association game I was totally unable to recall the name of a dotcom/TVtype who also owned an NBA team. It's embarrassing when you know that later you'll easily recall that which you then could not reach out and grasp.

I mention this not as an outlier but as what seems to be becoming the new norm for me. My memory, while never a great one, is indeed failing. I'm not yet quite 80 and have been in control (for better or worse) of my life since I was about 16. Contemplating the idea of loss of control is troubling and I'm not sure I'm there yet but have turned over duplicate bank access and other pertinent information to the family.

With any luck I'll look back on this next year and think what a schmuck I was.
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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: Lemon Drop
Date: May 10, 2022 05:27AM
What was the result of his memory test and evaluation from the neurologist or other MD? Medical professionals should be guiding your family and letting you know what level of care is needed to support activities of daily living, and what legal steps are needed. The doctor can take away the car keys, it is not up to the patient to self-diagnose and they don't need to "admit" anything, the work is up to the family, unless you decide he is too much trouble and warehouse him. Which is still what most American families do.

There is dignity in dementia. Keep the preservation of his dignity front of mind.

I've been my Mom"s primary caregiver for 2 years. 8 have excellent support and we are lucky. It is not a burden, the love and normalcy I provide is what she deserves after a long life well-lived. I'm amazed by hard she works everyday.

Matt your FIL is working very hard to overcome one of the most difficult illnesses. Figure out what he needs and do it.
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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: Speedy
Date: May 10, 2022 05:32AM
To all who posted, my best wishes and good luck.

My mother had moderate dementia at 78. She lived with my stepfather and his daughter and she took care of my mother until the daughter decided to stop giving her water (something the daughter had done six months earlier but then had notified my sister so we could say our goodbyes except my sister rehydrated and so ‘revived’ our mother.) She died a few days later. I lived closest at 250 miles away so there was no practical way to monitor her care and still work. My stepfather controlled things but trusted his daughter to provide appropriate care because she had been a registered nurse but she had lost her license because she was stealing drugs.



Saint Cloud, Minnesota, where the weather is wonderful even when it isn't.
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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: NewtonMP2100
Date: May 10, 2022 09:19AM
.....wish you the best.....the hard part is the denial.....nothing can really be done until he accepts it but that may never happen....



_____________________________________

I reject your reality and substitute my own!
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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: Blankity Blank
Date: May 10, 2022 09:53AM
Quote
Lemon Drop

There is dignity in dementia. Keep the preservation of his dignity front of mind.

I would more say there can be dignity, but it is a cruel affliction that affects everyone differently and leaves families with varying levels of what they can control.

Even in the most pernicious of circumstances it’s vital that as a caretaker you learn to help them retain as much dignity as possible, but understand that the frustration, anger and despair at the loss of self it brings is handled better by some than others, and fill voids as best we can with love and compassion.

Quote

I've been my Mom"s primary caregiver for 2 years. 8 have excellent support and we are lucky. It is not a burden, the love and normalcy I provide is what she deserves after a long life well-lived. I'm amazed by hard she works everyday.

The ten years caring for our mother was a burden, a tremendous one. But for one of the two most loved people in my life, it’s a burden I would unflinching shoulder for a hundred years if need be.

My sister was beginning to show early signs of possible oncoming cognitive dysfunction later in her life as well. She would have received my dedication exactly the same. Love will not let you do any less.

I would like to also echo Speedy’s good wishes to everyone out there caring for loved ones who are unwell. Please, please, please do not forget or stint on caring for yourself as well. You deserve it and a depleted vessel is less effective in spite of the will to be of service.



National Suicide Prevention Hotline tel:1-800-273-8255

I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.



Edited 2 time(s). Last edit at 05/10/2022 10:03AM by Blankity Blank.
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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: mattkime
Date: May 10, 2022 12:54PM
Its difficult to tell if progress has been made buuuut....

FIL canceled today's memory care appointment, claiming bike accident and illness. (not true)

Brother in law got him to say he'd go. He rescheduled for 2 months from now. To me, thats a bit too far in the future but its better than nothing.

I think my brother in law will be the primary contact going forward for anything requiring a lot of trust. We're kind of confused / surprised that he's the one he's chosen to trust but we can go with it.



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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: RgrF
Date: May 10, 2022 03:03PM
Kicked the can down the road did he?
Just maybe he figures he can keep that up with the BIL longer than with others, never underestimate the guile us old decrepit guys have to fall back on. off the air smiley



Edited 1 time(s). Last edit at 05/10/2022 03:05PM by RgrF.
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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: mattkime
Date: May 10, 2022 04:06PM
Quote
RgrF
Kicked the can down the road did he?
Just maybe he figures he can keep that up with the BIL longer than with others, never underestimate the guile us old decrepit guys have to fall back on. off the air smiley

I’m with you but my wife needs me to be positive



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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: wurm
Date: May 10, 2022 07:01PM
Quote
Blankity Blank
Denial and dementia go together like ham and eggs; just natural pairing.

With our mom, we took a multipronged approach.

Used a ‘well let’s cross this off the list/get to the bottom of this once and for all” approach to bringing in a neurologist to do tests, including a brain scan, so there were black and white, hard facts on the table.

Also worked with a therapist for a short while to help acclimate to the reality of having “memory issues” (dementia). And once the rubicon of getting dementia out in the open was crossed (even with sporadic denial still going on) engaging with counselors at the Alzheimer’s Association was a godsend for all of us. Their resources and counseling were life and sanity savers.

The one thing we found to be absolutely critical was to understand that as caretakers, there is no ‘winning’. You manage and guide. You don’t argue/insist that it’s ridiculous someone is stealing their printer ink, you help find the other ways it might have ‘disappeared’. It’s playing diplomat between their fears, worries and anger, and the real world.

You accept there’s going to be bad days and better days.

Some things, of course, ultimately can’t be negotiated or even softened as much as one might wish. Driving, financial issues, medical issues.

Our mom never ‘admitted’ she had dementia, and that was okay. The real goal is living with it, not necessarily speaking it’s name, as if that were some vital part of battling the dragon.

That is about as well stated as anything I've read on this forum.

From a personal standpoint, my three brothers and i went through this several years ago with my father. We were very fortunate that he (and many of his generation) took the words of doctors and priests as gospel (sorry). We all went to a specialist together, and after a short meeting alone with dad and a followup with all us sons, at one point the doc said something to the effect of. "Well, you're done driving of course." At which point I recall dad handing his keys to us. Case closed. We had been struggling with how we were going to have to break that news.
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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: Blankity Blank
Date: May 10, 2022 08:29PM
Quote
mattkime
Quote
RgrF
Kicked the can down the road did he?
Just maybe he figures he can keep that up with the BIL longer than with others, never underestimate the guile us old decrepit guys have to fall back on. off the air smiley

I’m with you but my wife needs me to be positive

I guess a part of me must be dementia battle scarred.

A little voice in my head wants me to post, “Well, you could always reschedule the appointment, wait a week or so until he forgets about the call, then swing by on the day to pick him up for “the appointment you made”. You remember, right?’.”

But don’t do that. Bad Blankity brain! Bad! Really. big grin smiley



National Suicide Prevention Hotline tel:1-800-273-8255

I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.



Edited 1 time(s). Last edit at 05/10/2022 08:30PM by Blankity Blank.
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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: Diana
Date: May 10, 2022 11:19PM
Quote
Blankity Blank
Quote
mattkime
Quote
RgrF
Kicked the can down the road did he?
Just maybe he figures he can keep that up with the BIL longer than with others, never underestimate the guile us old decrepit guys have to fall back on. off the air smiley

I’m with you but my wife needs me to be positive

I guess a part of me must be dementia battle scarred.

A little voice in my head wants me to post, “Well, you could always reschedule the appointment, wait a week or so until he forgets about the call, then swing by on the day to pick him up for “the appointment you made”. You remember, right?’.”

But don’t do that. Bad Blankity brain! Bad! Really. big grin smiley

Wellll…. Something similar happened with Mom. She was advised by her doctor to take a neuropsychological exam, so it was scheduled, waited all the way through the 2-month or so period of time until … the doctors office called and reminded her that it was scheduled and would she confirm? At which time she dug her heels in and said no, no way.

It would be helpful to have a baseline/evaluation of where she was at the time, but that blew up big time. All because she thinks it’s another point that people can look to and say she’s crazy, lock her up. Not rational, I know.

She has since changed doctors, back into the local system I worked hard (with her “encouragement”) to get her out of.
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Re: any wisdom on dealing with a parent with dementia that doesn't want to admit it?
Posted by: Michael
Date: May 11, 2022 05:22AM
One thing that I'd focus on is the money. There's just a real possibility of a nefarious character taking substantial sums. You said your MIL hasn't been part of it. But, if she's a co-owner on the various accounts/properties she might be able to give somebody a financial power of attorney over the accounts. That would then allow that person to oversee them and perhaps put various limits on withdrawals, etc. Obviously this might require a legal opinion as to whether your MIL can give somebody POA without your FIL's permission. And it might cause a huge problem when he discovers it. But, it's something to consider.

I'm losing a step; interestingly I've really noticed a problem remembering names of things/people in the 2 months following COVID. Maybe that will get better, maybe not. I'm going to give my (trusted!) daughter financial power of attorney at some point to be sure that my wife and I don't go over a financial edge in our doddering years. Since she's an only child she won't have competing motives. Since she earns more than we ever did she won't have any motivation to act inappropriately with our funds before she inherits them.

Good luck. It's a tough situation.
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