How to prepare for possible future incapacity?

[jonat]

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.

Even if they don't go bankrupt, they can change owners and that can change life significantly for the folks who live there. My aunt and (very recently deceased) uncle bought into a Florida CCRC about 15 years ago. This is the sort that's like a big apartment building. It's good for them, in that they have always been apartment dwellers, but it would drive DW and I crazy in no time flat.

An issue is that the facility has gone through a series of owners, some of which would defer maintenance and shut out the voices of the tenants. Things are a bit better now, but every time I visit them I'm reminded why I would never choose to live in such a place.

 

[JoeWras]

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.
....
- Rita

Rita, thank you for sharing your very sound plan and results.

Being younger, DW and I done what you have done. But right now, we both have siblings to handle things. I think we are covered now. Like you, for #1 we chose a firm to avoid all the grief on siblings. They'll take a cut. So what.

#2 and #3 were with our siblings. In my state, the wording for #3 was very, very strict. Get a good lawyer. You want your wishes followed. This covers us now when we get into a case of both of us incapacitated by some accident. Our worries are about decades hence. We need to continue to plan for later in life when siblings die or become unreliable.

In light of this, I think I would add this to the list: have a "yearly checkup" on whatever estate plan is in place. Not 5 years. Not 10. But yearly. You may not need to get the pros involved each year, but we should at least all review who we have named and think about changes that may need to be made.

 

[braumeister]

I'm sure it has been mentioned here before, but I think this is another good resource on the subject, at least for the health care aspect:

National POLST Paradigm

The National POLST Paradigm is an approach to end-of-life planning that helps elicit, document and honor patient treatment wishes. The POLST Paradigm emphasizes:

• (i) advance care planning conversations between patients, health care professionals and loved ones;
• (ii) shared decision-making between a patient and his/her health care professional about the treatment the patient would like to receive at the end of his/her life; and
• (iii) ensuring patient wishes are honored.

 

[Walt34]

We have no children so that option is out. DW's nephew and niece are secondary financial POA and medical POA for both of us. I have a niece I would trust but she has some serious medical issues and it is possible, even likely, that I will outlive her. DW almost certainly will.

We are also on a waiting list for a CCRC. DW's father was in there for almost a year in full nursing care and we were impressed with the care he received. A lesson learned for us was that my mother went into a CCRC in independent living for ten years and loved it. But she was outgoing and participated in many of the available activities. She was in assisted living for six months before passing. Her mother had been a burden to her children and there was some family resentment that Mom couldn't help. But we didn't have much money and there isn't much one can do from 400 miles away. While she never said so, my sisters and I are certain that she chose the CCRC to avoid placing a burden on us. She cried when she moved from the house she'd lived in for almost 40 years, but six months later, relieved of taking care of the house, said she wished she had done it ten years sooner.

In contrast, FIL was terrified of "nursing homes" for good reason, since his father stayed in one of the 1960's-style ones that was basically a bed and a TV and wait to die. He didn't understand that most have greatly improved despite our taking him to see several. The result was that he insisted on staying in his house until physical disability forced the move and we were fortunate to be able to get him into a good facility.

The lessons were not lost on us, hence the decision to move to a CCRC while the choice is still voluntary. Yes, things can still go south, but one cannot prepare for every possible eventuality.

 

[Scuba]

CCRC's can really help with care as one progressively becomes less independent. However, CCRC's do not manage investments, pay outside bills, or make critical healthcare decisions for their residents. One needs an advocate with an interest in the person as stated above. Like others, we currently have siblings and close friends who have volunteered to serve as healthcare and financial POA's. However they all live out of state and are older than we are or close to our age, so as we get older, I really don't know what we will do. If we haven't developed close relationships with younger people by then, we'll have to hire people for these services. I'm sure they could handle the technical aspects but there is no substitute for having a person you trust and who cares about you to handle these things, especially healthcare decisions.

 

[Scuba]

Even if they don't go bankrupt, they can change owners and that can change life significantly for the folks who live there. My aunt and (very recently deceased) uncle bought into a Florida CCRC about 15 years ago. This is the sort that's like a big apartment building. It's good for them, in that they have always been apartment dwellers, but it would drive DW and I crazy in no time flat.



An issue is that the facility has gone through a series of owners, some of which would defer maintenance and shut out the voices of the tenants. Things are a bit better now, but every time I visit them I'm reminded why I would never choose to live in such a place.

+1
Changes in ownership are common and will probably increase in the future as it is still somewhat of a "mom & pop" industry ripe for consolidation. Bankruptcies have happened but are relatively rare and typically residents are not displaced as a result. However new ownership takes over.

CCRC's are a great choice for a segment of the population. Congregate living can be a big adjustment and the personality of each CCRC can be quite different, depending on both the residents and ownership/management. Even so, CCRC's do not solve the problem of not having a trusted advocate.

 

[bmcgonig]

Just came across this article apropos what we're discussing


http://www.kiplinger.com/article/retirement/T066-C000-S004-build-an-action-plan-for-alzheimer-s.html

 

[Scuba]

Just came across this article apropos what we're discussing


http://www.kiplinger.com/article/retirement/T066-C000-S004-build-an-action-plan-for-alzheimer-s.html

Thanks for sharing. Great article. I still feel we have a "hole" that I'm not sure how to fill with respect to the trusted caregiver/advocate who participates in discussions with the hired team members and helps make key decisions. But the article is quite encouraging in that dementia and/or ALZ don't happen overnight so there is usually time for people to have a lot of input in planning for their futures even after an ALZ or dementia diagnosis. Makes a lot of sense.

 

[youbet]

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.

Since you didn't spend the ton of money many of us did raising kids, you should have it now to spend on professional help. Just hire an elder attorney who specializes in acting as a fiduciary in these types of situations.

 

[marko]

Since you didn't spend the ton of money many of us did raising kids.......

What I'm reading on this thread is that the kids that people 'spent a ton of money on' are still not often a good option.

 

[marko]

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?

We haven't crossed that bridge. We do plan to check out some CCRCs and assisted living at some point. Not sure how it all works.

He's semi-independent: he can walk, bathe, dress, get in/out of bed on his own and prepare small meals. Watches a lot of TV. He is able to be left alone for a day or two with no supervision other than for his med distribution.

What he can't do is make financial/major life decisions.

 

[Scuba]

Since you didn't spend the ton of money many of us did raising kids, you should have it now to spend on professional help. Just hire an elder attorney who specializes in acting as a fiduciary in these types of situations.

What's missing with any of the hired pros (attorney, bank trust dept, care manager) is the degree of caring that IMO only comes from a true personal connection. I'm pretty confident that when the time comes, we'll have the resources to hire the "team" but not sure who will guide the team with carrying out our wishes and just looking after us (visiting us in the "home", making sure we're getting the appropriate level of attention from CCRC or memory care staff, etc.). Hopefully we have 25-30 years before we need to worry too much about this. Knowing there are many others in our situation makes me optimistic that solutions will develop over time.

 

[JoeWras]

Thanks for sharing. Great article. I still feel we have a "hole" that I'm not sure how to fill with respect to the trusted caregiver/advocate who participates in discussions with the hired team members and helps make key decisions. But the article is quite encouraging in that dementia and/or ALZ don't happen overnight so there is usually time for people to have a lot of input in planning for their futures even after an ALZ or dementia diagnosis. Makes a lot of sense.

The article is helpful, but not everyone gets this kind of warning. It is ALZ focused, which is fine, but ... I think people should prepare before any impairment.

We have friends and family who had spouses get dementias that were not self evident. It was messy. Some personality types will not accept an ALZ diagnosis. And then there are other dementias like Frontotemporal Degeneration (FTD) where not only the sufferer, but also the family may not be aware.

 

[misshathaway]

What's missing with any of the hired pros (attorney, bank trust dept, care manager) is the degree of caring that IMO only comes from a true personal connection. I'm pretty confident that when the time comes, we'll have the resources to hire the "team" but not sure who will guide the team with carrying out our wishes and just looking after us (visiting us in the "home", making sure we're getting the appropriate level of attention from CCRC or memory care staff, etc.). Hopefully we have 25-30 years before we need to worry too much about this. Knowing there are many others in our situation makes me optimistic that solutions will develop over time.

My father had dementia and for about a year before his death he was increasingly in a mostly happy world of his own. He talked to his deceased family and put himself into court dramas he had seem on TV. It's possible that in the very end, if you are warm and fed, your mind might allow you to escape some suffering. It would also make personal visits and oversight somewhat less important so long as the basics were covered.

This is what I'm telling myself. Well that, and who knows what breakthroughs technology will bring by then. Both of my parents had dementia.

 

[ER Eddie]

I'm sure it has been mentioned here before, but I think this is another good resource on the subject, at least for the health care aspect:

National POLST Paradigm

Yes, end of life issues should be considered. I've found two books helpful: To Die Well (Sidney Wanzer, MD, & Joseph Glenmullen, MD) and A Better Way of Dying (Anne Fitzpatrick, MD & Eileen Fitzpatrick, JD). Difficult subject to face, but worthwhile.