How to prepare for possible future incapacity?

[jonat]

DW and I are 65 and 62, respectively. DW is concerned, with good reason, that she may become incapable of managing her life due to dementia, which runs in her family, should something happen to me. We have no family nor close friends who could (or we would want to) step in and help. DW is convinced she will die first, but worries about what happens if I'm hit by a bus or some other accident occurs.

For our wills, we named the lawyer's office as executor, but we're more concerned about what happens if one of us is gone and the other can't manage affairs. We did meet the other day with our FC at Fidelity and a Fidelity lawyer who educated us on their trust services. This would solve a large part of the problem as, in the case we're worried about, they would pay our bills and "keep the lights on". But there's more to life than that and while using a trustee (with a revocable trust) helps a lot, we're unsure what other resources we can make use of.

I'd appreciate people's thoughts on this, especially if you have experience with the issue.

 

[Blue Collar Guy]

I remember seeing a thread about this, Ill look for the link,

 

[Clone]

Our situation is different, as we have children plus several close relatives that I/we would trust. The following would be my suggestions, if you were in my neighborhood.

There is a facility in our previous hometown that has everything. Duplexes, Condos, Apartments, Assisted Living, Memory Support, Skilled Nursing, and Rehab to Home. Once you are in the system, you will never be kicked out for lack of money or health issues. I believe they are able to provide trustee services, although our experience with them did not involve that. DW’s parents were accepted into the system as independent living folks with some extra help. They needed some help dealing with some medical issues and some mobility issues. Over the years, they moved to assisted living. There were a couple stages in that based on how much care they needed. When the money ran out, the facility coordinated with Social Services, Medicaid, and whomever else. We were out of the loop at that point financially. We were still consulted on what was going on and why changes were happening. DW's parents were happy with the place and glad that they moved there.

Most folks that we know start with either the duplex or condo style units. As their needs increase, they move around within the system. If they need a few days in skilled nursing following medical procedures, that is still within the system. There are many daily and scheduled activities, plus the facilities are expanding in a planned area with many services within walking distance or nearby. The facilities has transportation services available.

Your concern is potential memory care for a surviving spouse. If you were to start in one area, either duplex, condos, or apartments, then it would be an easy move if the need arises to either assisted living or memory care. You can position yourself in the system so that the living arrangements are basically on auto-pilot. The plan might sound like this: “We start in a duplex or condo. In the event of Mr. J passing, Mrs. J would like to move to an independent living apartment, with light housekeeping services. Meals or additional services may be requested or added on if felt to be necessary. We are concerned about dementia issues, and would wish to be moved to a memory care area as appropriate. Some regularly schedule health and welfare evaluation would be appreciated to identify any such memory issues.”
I believe they can put together a plan that would ensure that Mrs. J would receive the assistance she might need. Until that time, you are in a community that allows for you to be as involved or as independent as you wish.

 

[donheff]

There is a facility in our previous hometown that has everything. Duplexes, Condos, Apartments, Assisted Living, Memory Support, Skilled Nursing, and Rehab to Home. Once you are in the system, you will never be kicked out for lack of money or health issues.

Be careful. These places can be a good solution but they are no guarantee. If members become hard to manage these places can toss them. DW's father was in a highly rated multi-level retirement community but when he got angry and threw a chair in the day room of the memory unit (the staff's fault due to ignoring complaints about another patient IMO) the facility said he needed to go to a psychiatric unit at a nearby hospital for eval. That ultimately turned out to be a ruse. The facility never allowed him back in and fought the return of his deposit. This split him off from his spouse who was still in the apartment. We appealed to the state office that oversees these things and ultimately got relief but the whole experience was a nightmare. In hindsight, we would have refused to move him to the psych unit which would have forced the facility to follow due process to remove him which they would probably not have pursued. The OP might be in a better position since no family could be tricked into moving him and a lawyer representing his interests could be instructed to be a PITA.

 

[Scuba]

The other important point is that while a multi-level retirement community or a CCRC is probably a safer environment vs living at home alone as one ages, it isn't a full solution. Still need someone you trust to help manage financial affairs, major healthcare decisions, etc. CCRC's typically rely on family members to do these sorts of things for their residents. DH & I are in the same boat as we have no kids, no nearby nieces/nephews and many of our close friends are a bit older than we are. Not sure what we'll do if both of us become incapacitated.

 

[Koolau]

We at least started the process by setting up our condo for wheel chairs, lack of trip hazards, and friendly neighbors. I think our next stop may be an Elder Law Attorney - thinking about living trusts, looking for "fiduciary" of some kind, etc. Don't know how this will all work out.

So far, we're banking on, at least for a while, only one of us would be "disabled." Obviously, that's not a guarantee, but it makes some sense as a first approximation. But then what? What about the "2nd to go?" Good question. There was a 91 year old lady in our condo. We befriended her and always made sure she got to the clinic if she hurt herself. We protected her from her landlord who was trying to mistreat her. So as ad hoc care givers, I think we improved her life. But, we can't count on "good karma" for our 90's (or whatever.)

We do worry about this a bit since we have no close (as in distance) relatives. Lots of friends, but wouldn't saddle anyone with changing our depends (not even family) except for pay.

One of the reasons we want to maintain a decent stash is to take care of ourselves in our dotage. I'd just as soon not wake up some morning, but we don't get to choose our destinies. YMMV

 

[marko]

I'm also interested in replies on this subject. My brother's stroke last year has upended things. As long as me or DW are alive, he'll be taken care of.

But if he outlives us both, we have no one (no cousins or other relatives) who might look after his finances and care. DW has nieces but they're quite removed responsibility-wise.

I've also been too close to situations where lawyers were placed in charge of finances with dire results.

We are considering a CCRC for him but again, in his case there would be a very hefty (and tempting) bag of cash needing management.

 

[JoeWras]

This is a great topic, and it is timely to bring up again. It has come up a few times over the last years. One of the last times it came up I think it was titled something like Managing Incapacity Without Children. The thread still filled up with contributions from people with children because they said they didn't trust their kids! That was an eye opener to me. So, in any case, all are welcome to the discussion.

Our relatives are niece/nephews, and we don't think any of them will be capable of good choices, so we are in this boat.

The past discussions usually came down to these choices:
- CCRC
- Level care community (not CCRC necessarily)
- Trusted distant relatives
- Build a friend network
- Professional management
- Sound estate plan
- Combinations of above

These have already been discussed on this thread too. I know the last time we had this discussion, nobody came away with a "magic bullet". It seemed to come down to a combination of things. Both living and financial needs will take different strategies.

And the problem is for every good story, there's a bad one. You hear about great CCRCs and multi-level retirement places, then you hear stories of being kicked out due to some loophole. That scares the stuff out of me.

Likewise with financial. You hear of great plans drawn up by lawyers to handle your affairs while incapacitated, then you hear of others who drained it away.

So... We're still researching. This is going to take some time. Sounds like the "grand plan" will be one of the first things we do in ER.

 

[braumeister]

The thread still filled up with contributions from people with children because they said they didn't trust their kids!

Far more common than I would have guessed.

When mom moved into a retirement community (big building with a nice dining room serving three meals a day) she quickly made lots of new friends. Conversation around the table often dealt with this issue and mom was always happy to say she never thought about money because she had turned all that over to me.

Her friends were aghast, since not a single one of them trusted their kids. And this was not even an assisted living place -- completely independent so you would think there weren't even any memory issues. They simply didn't trust their own kids or any other relatives.

 

[Koolau]

Far more common than I would have guessed.

When mom moved into a retirement community (big building with a nice dining room serving three meals a day) she quickly made lots of new friends. Conversation around the table often dealt with this issue and mom was always happy to say she never thought about money because she had turned all that over to me.

Her friends were aghast, since not a single one of them trusted their kids. And this was not even an assisted living place -- completely independent so you would think there weren't even any memory issues. They simply didn't trust their own kids or any other relatives.

I can kind of see this. None of our kids has shown great money management skills, though they are doing okay on their own. One seems incapable of carrying out our wishes - even over simple things like starting the car occasionally when we are gone. I don't think it's "evil" - just not wired properly to take on certain responsibilities. I suppose most kids would want to honor their parent's wishes, but not all are capable of doing even simple things.

 

[jonat]

Lots of great comments so far - thanks! I do have an adult son, but he lives far away and is not someone I think could handle this burden.

 

[Richard4444]

DH & I are in the same boat as we have no kids, no nearby nieces/nephews and many of our close friends are a bit older than we are. Not sure what we'll do if both of us become incapacitated.

Almost ditto for DSO and myself. We use term "last man standing" and in our mid 60's, it is something we talk about often, and as was said here, there seems to be no "magic bullet." DSO has a 27 y.o. CPA nephew that might be an answer and when I can't do it myself, I know of the better CCRCs around which I'd have no problem living in.

What happened to good old talks like: "Where are the parties this weekend?"

Rich

 

[jimnjana]

DW and I are 65 and 62, respectively. DW is concerned, with good reason, that she may become incapable of managing her life due to dementia, which runs in her family, should something happen to me. We have no family nor close friends who could (or we would want to) step in and help. DW is convinced she will die first, but worries about what happens if I'm hit by a bus or some other accident occurs.

.

Perhaps DW should have an MRI of her brain done now. I believe this is the definitive method of determining whether or not alzheimer's is present. Detecting it early is the best way to combat it.

 

[razztazz]

Perhaps DW should have an MRI of her brain done now. I believe this is the definitive method of determining whether or not alzheimer's is present. Detecting it early is the best way to combat it.

Is there a new test to do this? My understanding thus far is, Alzheimer's is only truly knowable by an autopsy after death. There currently is no diagnostic scan that can detect it or forecast it. Did I miss something?

 

[cathy63]

Is there a new test to do this? My understanding thus far is, Alzheimer's is only truly knowable by an autopsy after death. There currently is no diagnostic scan that can detect it or forecast it. Did I miss something?

Apparently PET scans can detect the amyloid plaques that are the marker of Alzheimer's Disease. This IDEAS study has been in the news quite a bit recently because so many dementia patients who are participating have been shown not to actually have Alzheimer's.

https://www.washingtonpost.com/national/health-science/brain-scans-show-many-alzheimers-patients-may-not-actually-have-the-disease/2017/07/18/52013620-6bf2-11e7-9c15-177740635e83_story.html

They still have dementia even if it's not Alzheimer's though, so they may still not have the ability to manage their own affairs.

 

[braumeister]

Apparently PET scans can detect the amyloid plaques that are the marker of Alzheimer's Disease.

I haven't kept up with this lately but last I read, there was no certainty on whether the plaques are a cause or a byproduct. In other words, the plaques can be found on autopsy in people who never exhibited signs of it. So early plaque detection may not mean anything.

Of course, I have no medical training so anything I think I know came from general interest sources.

 

[jonat]

Perhaps DW should have an MRI of her brain done now. I believe this is the definitive method of determining whether or not alzheimer's is present. Detecting it early is the best way to combat it.

As others have said, there is no useful test for detection of dementia or Alzheimers. But, as it happens, DW had an MRI just a couple of years ago to rule out brain issues causing a hearing imbalance. It came up clean. But both her parents had dementia and that puts her at high risk. Indeed, she thinks she is already seeing signs of it and it scares her. (But do you think I can get her to go see her doctor to discuss it? She refuses...)

 

[jimnjana]

As others have said, there is no useful test for detection of dementia or Alzheimers. But, as it happens, DW had an MRI just a couple of years ago to rule out brain issues causing a hearing imbalance. It came up clean. But both her parents had dementia and that puts her at high risk. Indeed, she thinks she is already seeing signs of it and it scares her. (But do you think I can get her to go see her doctor to discuss it? She refuses...)

My father got an MRI after he noticed he was having memory issues. He is a retired physician assistant. His family doctor told him the scan is the definitive diagnosis. This is part of the process of preparing for war. Know your enemy. Get her to see her doctor and go from there.

 

[razztazz]

His family doctor told him the scan is the definitive diagnosis

Trust but verify. I wouldn't fall for that kind of certitude by any of my doctors. They're wrong too often but always sure

 

[cathy63]

I haven't kept up with this lately but last I read, there was no certainty on whether the plaques are a cause or a byproduct. In other words, the plaques can be found on autopsy in people who never exhibited signs of it. So early plaque detection may not mean anything.

Of course, I have no medical training so anything I think I know came from general interest sources.

According to the WP article I linked above:

A positive test for amyloid does not mean someone has Alzheimer’s, though its presence precedes the disease and increases the risk of progression. But a negative test definitively means a person does not have it.

So yes, your understanding is correct that finding plaques doesn't always mean Alzheimer's. I think it's the ability to prove the negative that's new.

I'm not sure whether this really helps people who are worried about ending up incapacitated though. Even if we now know that fewer people have Alzheimer's than we previously thought, the non-Alzheimer's patients still have impairment/dementia that hasn't been cured. And of course there are many other diseases and injuries that can incapacitate a person as well.

 

[razztazz]

But a negative test definitively means a person does not have it.

Yes but will they get it ? Timing is everything. Will the plaques start forming at some point after the scan? Perhaps, like a colonoscopy, a test every 10 yrs during the critical late-middle stage of life could be a useful heads-up...?

And of course there are many other diseases and injuries that can incapacitate a person as well.

I'm more afraid of something like a stroke than Alzheimer's. There's only so much you can do to avoid them and they hit suddenly. At least with Alz's you get some warning time.

 

[bmcgonig]

I'm also interested in replies on this subject. My brother's stroke last year has upended things. As long as me or DW are alive, he'll be taken care of.

But if he outlives us both, we have no one (no cousins or other relatives) who might look after his finances and care. DW has nieces but they're quite removed responsibility-wise.

I've also been too close to situations where lawyers were placed in charge of finances with dire results.

We are considering a CCRC for him but again, in his case there would be a very hefty (and tempting) bag of cash needing management.

Very sorry to hear about your brother's stroke, marko. It's very much my biggest fear for myself. However I was under the impression that a CCRC only takes healthy or very low dependency people entering into independent living. Is he well enough for that? Or maybe I'm wrong that he can enter into assisted living, or?

 

[Blue Collar Guy]

Do these CCRC places ever go bankrupt? I bet if I bought in, the minute I need a step up in care they would go bust.

 

[Gotadimple]

DW and I are 65 and 62, respectively. DW is concerned, with good reason, that she may become incapable of managing her life due to dementia, which runs in her family, should something happen to me. We have no family nor close friends who could (or we would want to) step in and help. DW is convinced she will die first, but worries about what happens if I'm hit by a bus or some other accident occurs.

For our wills, we named the lawyer's office as executor, but we're more concerned about what happens if one of us is gone and the other can't manage affairs. We did meet the other day with our FC at Fidelity and a Fidelity lawyer who educated us on their trust services. This would solve a large part of the problem as, in the case we're worried about, they would pay our bills and "keep the lights on". But there's more to life than that and while using a trustee (with a revocable trust) helps a lot, we're unsure what other resources we can make use of.

I'd appreciate people's thoughts on this, especially if you have experience with the issue.

I recently went through this entire process, as I am single with no children, and my closest relative is not dependable. There were three decisions I needed to make when I had my will made up: 1) who would act as executor, 2) who would act for me if I am unable to handle financial affairs, and 3) who would act for me with my medical providers if I am unable to give instructions.

#3, a medical power of attorney was given to a close family friend. I know this couple would step in if I needed them.
#2, a durable power of attorney for financial affairs was given to a different friend. She agreed to do it, but it scares her. She's quite capable, but its one thing to write the checks, and another to watch a dear friend who is no longer capable. She said it makes her stomach hurt, but she would do it for me.
#1, I just couldn't put this burden on a dear friend. Instead I chose a firm that settles estates to act as executor.

The attorney who made up my will is the only estate attorney in the practice. He indicated who could not act as executor as he authored the will. He offered one resource and I found a second that was more reasonably priced. When I showed him the material I got from them, he said their charges for probate are the same as what he would charge if he was allowed to probate my will.

But as to "may become incapable of managing her life," this is one where your attorney needs to advise you of options in your community. You need to have a close friend who would be willing (with a POA) to help get her or you admitted into a care facility AND to oversee that she is well cared for in the facility. A Trust division of a bank or brokerage can easily take care of the paperwork and legal transactions, but, overseeing the care being provided, takes someone with an interest in the person under care.

- Rita

 

[imoldernu]

At the risk of boring many of the regulars, I'd refer you to some of my extensive thoughts on this subject.
Since the subject of Alzheimers is very, very personal to me, as I'm gong through the process myself, and doing my bast to protect my DW when the inevitable happens.

http://www.early-retirement.org/forums/f27/sharing-23-years-of-frugal-retirement-62251-2.html#post1331497

I don't share some of the opinions about the care to be expected in nursing homes, as the CCRC that we live in also has a memory (AZ) unit, that I'm familiar with.. with friends who have progressed to that level. The link starts with a post that begins the discussion and goes through the legal, financial, emotional and reality thinking that I've shared with my family.

Guarantees?... no way. but bits and pieces of movement from one stage to another, always with the thought of being together for as long as possible, and then being there, in the same CCRC for love and support.

We've watched this happen to many others in our community, and are encouraged by seeing how they handled the path to be traveled. The most encouraging part has been that the level of upset is mitigated by living in a community that is used to coping.

I guess that if I had any advice at all... (I hate to give advice)... it would be to take some time to investigate... in person... any facility that might be considered. Not to get a brochure, or to go on line for descriptions. We're already there, living in a villa (regular home) in Liberty Village, but we've seen enough and are involved enough to be comfortable in our choice. Whether one or five years from now, we'll be making the move to apartments, assisted living, nursing home or Memory Lane (the Alzheimer unit)...

Following the latter part of the link, is a review of the finances involved...

Best wishes and for a good outcome, and know that it's a good thing you're doing by looking ahead.