Rethinking CCRC living

[harllee]

My mother lives in a nice CCRC and it has been great for her. She is 90 and still living in an independent living apartment but it is a great comfort to know she can move into assisted living, etc as needed. It has been worth every penny. DH and I are planning to move into a CCRC next year, we have finally got to the top of the long wait list after 10 years. We have many friends at the CCRC and have no children so it makes sense for us. Not the cheapest option for sure, but it is the best option for us.

 

[ncbill]

Grandparents spent a couple of decades in a two-bedroom cottage at a local CCRC...caveat was they had tried two other CCRCs (with a small house in-between) before settling on their last one.

Not long after grandfather died after a decade there the CCRC told grandmother that since new residents in cottages were paying twice the monthly fee grandmother was paying they were doubling the fee...effective the following month.

After a lot of protests from all the old cottage residents the CCRC agreed to phase-in the increase...over 6 months.

Absent state law protections, you have NO tenant rights at the vast majority of CCRCs...they can pull the above crap on you at-will.

It did work for them...their non-refundable buy-in was only around $75,000 back in 1990...but today it's closer to $375,000.

 

[athena53]

DH and I are planning to move into a CCRC next year, we have finally got to the top of the long wait list after 10 years. We have many friends at the CCRC and have no children so it makes sense for us. Not the cheapest option for sure, but it is the best option for us.

I can see that it would be. The scenario with one spouse in LTC and one at home is scary-expensive. I'm widowed with one son and plan to find a good Independent Living facility, possibly with Assisted as well, when the time comes.

 

[Walt34]

Not long after grandfather died after a decade there the CCRC told grandmother that since new residents in cottages were paying twice the monthly fee grandmother was paying they were doubling the fee...effective the following month.

That's one of the main issues that bothers me about a CCRC - having zero control over expenses of staying there after we've committed to that. Before signing anything I have already decided to have an elder law attorney (or two, maybe even three) look over the contract for any "gotchas" that I didn't foresee. I've read that one question to ask is "Under what circumstances can I be kicked out?"

While almost all of the CCRCs claim that they've never kicked anyone out after they exhausted all resources for financial reasons, what happens if dementia turns what once was an easy-going gentle polite person into an enraged homicidal/paranoid monster? Clearly that person is a threat to the other residents and staff, but what do they do about it? Where does such a person go, besides perhaps the state mental hospital?

While we can pay the entrance fees for most of the CCRCs that we've looked at online, doing so would take a sizeable chunk of our net worth, and for many of them that's a mistake we couldn't make more than once. Yikes! And I want to be careful to not put DW in a position 20+ years from now where I'm dead and she's locked into a place that has turned into a virtual prison with little recourse but to stay. Dang, I wish I had a better crystal ball. And of course hope is not a plan. Sigh.

 

[braumeister]

what happens if dementia turns what once was an easy-going gentle polite person into an enraged homicidal/paranoid monster? Clearly that person is a threat to the other residents and staff, but what do they do about it? Where does such a person go, besides perhaps the state mental hospital?

That's a very real concern. All I know is that when my mom was in a memory care facility for her last couple of years I visited 3-4 times a week and was very satisfied with it. There was adequate staff to monitor everyone all the time. A few needed to be medicated to keep them calm, but it wasn't overdone, and most of the staff seemed to really care about the residents.

It was expensive. Adjusted for inflation it would be close to $8K/month today. I would hope that a CCRC that offered such care would do it as well.

 

[Turtle]

My beloved bonus mother is an ambassador of sorts for CCRCs. She cared for both a father with a debilitating disease and years later a mother with dementia and for decades has been an advocate for planning ones own future. She has been determined to never ask any of her children to have to be the long term caregiver for her when she has the means to plan a head and do it herself.

Many of us thought she could stay independent etc...but supported her choice in any case. As one who loves color she turned the inside of her unit into a magical space very different then most.

Over the years I have grown more and more grateful and inspired by the full life she leads and with this mostly wonderful place she lives. Family is nearby and time is shared as well. Over the years she has had to access the additional level of care for a time which worked out very well.

These days I have a friend who considered it but seems to have waited to long and with challenging health issues is having a very difficult time. It's heartbreaking.


It helps of course when you live in a area that has some excellent options... as well as the means to do it.

So some food some food for thought if you'd like... Be well.

 

[Walt34]

Over the years I have grown more and more grateful and inspired by the full life she leads and with this mostly wonderful place she lives. Family is nearby and time is shared as well. Over the years she has had to access the additional level of care for a time which worked out very well.

That's the thing that made me so enthused about a CCRC for years. My mother's situation was similar, in that she was determined not to be a burden to her kids and the place she chose turned out wonderfully for her. And all three of us kids were grateful that she had made the choice that she did. She was in independent living for all but the last six months of her life and was in assisted living after that. She never was in full nursing care. We should be so lucky.

For me and DW, we don't have kids anyway, so that's not an option. The main issue seems to be the timing, of picking a time and place with enough time that the expense won't cripple us, but not waiting so long that getting in is not an option either. It's starting to sound a lot like a dice roll.

 

[harllee]

There are no absolute guarantees but I feel good about the 2 CCRCs I am most familiar with --the one where my mother lives (it has been in existence for 30 years) and the one where I plan to move (in existence 20 years). Both have long waiting lists. I have reviewed the financials for both (and had my attorney review them) and both of them have had monthly fee increases in the range of 3-4% per year as long as the have been in existence (even this year). Both of them are nonprofits and have trust funds to pay for people who run out of money. At the one where I plan to move there are 2 elderly ladies, both over age 100, who have run out of money and the trust is paying for their fees. Regarding the issue where someone becomes a danger to others, there is a clause in the documents of the CCRC where I plan to move that in that event the CCRC can place you in another facility but the CCRC has to pay for the additional cost. This CCRC is a Class A life care community where your fees do not go up even if you have to go to skilled nursing, memory care, etc. So far, the CCRC has not had to place anyone in a different facility but I guess it would be possible if you became dangerous. Personally, I would want to be placed in the appropriate facility if I were a threat to other people.

 

[Scuba]

There was recently a thread about some CCRC's closing their skilled nursing facilities because of the cost/reimbursement. That area of the center may be a large cost in any CCRC because of the more highly skilled staff. Not just nursing; there are usually physical therapists, occupational therapist as well as speech-language pathologists, and others.

I would guess that residents in independent living are supporting the costs of other areas as well as their own costs.

You are correct. Independent living residents definitely subsidize the skilled nursing operation.

 

[sengsational]

My mom was worried about "big" home maintenance expenses so moved to a CCRC. Her house, with HOA fees, wasn't an especially cheap place to live, but way cheaper than the CCRC is. But the decision had a good bit of increased simplicity in it, and that's a big thing.

One idea I had was to get help with coordination of the home maintenance tasks. Having a rental property on our cul-de-sac wasn't welcome news, but on the lemons to lemonaid side of things, the landlord has a cadre of dependable trades for everything. I wondered, while reading this thread, if I could ask if she's willing to be hired as a kind of general contractor. Obviously, if you don't have someone you trust, it could be a bad idea. But this landlord seems like she'd be happy with a fair mark up. And that would be a whole lot cheaper than the CCRC. You also would make it clear that there would be paperwork expected, which could be audited by the kids, sibs, or friends.

 

[harllee]

One of the things i like about my moms CCRC is that every resident wears an emergency pendant that can be activated by the push of a button and is also activated if a resident falls. Once the pendant is activated a CCRC employee rushes to the residents apartment to see what the issue is. One time my mother pushed the button accidentally and a staff person was at her door in a matter of minutes. In addition if mother does not show up for lunch without calling in an employee comes to her apartment to check on her. Mother is in independent living and these safe guards gives mother and me a great deal of peace of mind. The monthly fees in the CCRC are fairly high but these are the types of things those fees pay for, worth it to me.

 

[Jerry1]

This popped up on my feed today:

https://www.washingtonpost.com/business/2022/09/25/seniors-home-health-care/

The title says it all:

Seniors are stuck home alone as health aides flee for higher-paying jobs.

There’s no doubt that aging in place will be more difficult without a way to hire the help that is needed. That is certainly on thing in favor of a CCRC. However, even a well run organization will have to deal with worker shortages and the likely answer to that is “more money”. CCRC’s are not going to be getting any less expensive as time goes on.

 

[nwsteve]

Harlee's post upthread (#36) is a good illustration of the recognizing the importance of fully understanding of what your needs and values will be in your REMAINING years. This awareness is critical to understanding if a CCRC is a good value proposition for you.
Since many decisions tend to emphasize prior data, we completely miss recognizing and assigning costs/values to our likely values 10 years in the future. I can certainly attest to how different our CCRC 70 yo neighbors' activities are in contrast to our 80+ yo neighbors. We have also been amazed how quickly what is important shifts, especially pass 75/80
In our Type A CCRC, one of the advantages in moving in our early 70s was we locked in not only our entry cost but also our long-term care cost. Lots of threads on this Board commenting on speed of increases of LTC insurance premiums.
For those who are counting on aging in place and using contractors and trades to take care of activities, suggest you be honest with your analysis on not only availability and your ability to access much less pay the then going rate. Perhaps check the recent price/hr appreciation rates over last five/10 years and look at demographics for availability of those skills. I well appreciate that it is COMPLICATED but that is why you will want to do more than extrapolate from history

 

[braumeister]

There’s no doubt that aging in place will be more difficult without a way to hire the help that is needed.

Japan is excruciatingly well aware of this and conducting an enormous amount of research into using robots for as much as possible of this kind of work.

 

[W2R]

DH and I are planning to move into a CCRC next year, we have finally got to the top of the long wait list after 10 years. We have many friends at the CCRC and have no children so it makes sense for us. Not the cheapest option for sure, but it is the best option for us.

IIRC your DH has auto-immune problems. Are you concerned about the risk that he might be more likely to catch Covid or some other disease due to being around the other residents at the CCRC? Not meaning to criticize your plans, which sound excellent, but I am interested.

 

[ncbill]

That's one of the main issues that bothers me about a CCRC - having zero control over expenses of staying there after we've committed to that. Before signing anything I have already decided to have an elder law attorney (or two, maybe even three) look over the contract for any "gotchas" that I didn't foresee. I've read that one question to ask is "Under what circumstances can I be kicked out?"

While almost all of the CCRCs claim that they've never kicked anyone out after they exhausted all resources for financial reasons, what happens if dementia turns what once was an easy-going gentle polite person into an enraged homicidal/paranoid monster? Clearly that person is a threat to the other residents and staff, but what do they do about it? Where does such a person go, besides perhaps the state mental hospital?

While we can pay the entrance fees for most of the CCRCs that we've looked at online, doing so would take a sizeable chunk of our net worth, and for many of them that's a mistake we couldn't make more than once. Yikes! And I want to be careful to not put DW in a position 20+ years from now where I'm dead and she's locked into a place that has turned into a virtual prison with little recourse but to stay. Dang, I wish I had a better crystal ball. And of course hope is not a plan. Sigh.

I can answer that one since mom was diagnosed with a form of frontal-temporal dementia (FTD) around age 50.

With FTD, memory is often well-preserved, but inhibitions drop to zero...whatever they think they will say or do.

So after I moved mom into a locked ALF for her own safety, other residents there would come in and take her clothes because they couldn't remember those clothes didn't belong to them.

However, mom remembered, and boy howdy did she ever get mad...one time stripping her favorite jacket off the lady (25 years older than mom) who had taken it before shoving the "thief" to the ground.

So that facility called the paramedics who came and took mom to the nearest hospital's ER...which led her to be be put by police in the back of a cruiser for a 3-hour trip to the state mental hospital.

Sadly, the above happened more than once..

The facilities won't take you back...your caregiver should expect to work with a social worker at the psych facility for placement in what usually turn out to be not the nicest places.

In retrospect, I joke I should have begged (or bribed) the staff to keep mom at the state mental hospital as long as she was ambulatory since she got the best care there.

 

[Octogirl]

Re CCRC.
My mother has lived in a CCRC for 14 years and it has been great for her. She is 94 now and moved from Independent Living to Assisted living in 2021 when she went blind. It has been worth every penny for her. Her contract requires same monthly cost in AL, so she is now paying 1500- 2000/ month less compared to those just moving in. Clearly, she was subsidizing her AL care for many years and it may not work out for all.
The other side of this is the labor shortage, lack of staff, and COL increases. We know that Mom has enough savings for 4-5 more years depending on inflation. However, the CCRC contract she signed in 2008 stipulates she can not be asked to leave.
I hear from one of the staff that they may eliminate the skilled care unit and provided the needed services in Assisted Living, called Aging in Place. Pretty sure is a fiscal decision not a quality of life decision.

 

[JoeWras]

I can answer that one since mom was diagnosed with a form of frontal-temporal dementia (FTD) around age 50.

With FTD, memory is often well-preserved, but inhibitions drop to zero...whatever they think they will say or do.

So after I moved mom into a locked ALF for her own safety, other residents there would come in and take her clothes because they couldn't remember those clothes didn't belong to them.

However, mom remembered, and boy howdy did she ever get mad...one time stripping her favorite jacket off the lady (25 years older than mom) who had taken it before shoving the "thief" to the ground.

So that facility called the paramedics who came and took mom to the nearest hospital's ER...which led her to be be put by police in the back of a cruiser for a 3-hour trip to the state mental hospital.

Sadly, the above happened more than once..

The facilities won't take you back...your caregiver should expect to work with a social worker at the psych facility for placement in what usually turn out to be not the nicest places.

In retrospect, I joke I should have begged (or bribed) the staff to keep mom at the state mental hospital as long as she was ambulatory since she got the best care there.

Thank you for sharing, ncbill. FTD is a terrible disease. Our friend got it and I have stories. I'll just give one: at a Christmas party, I was talking with her and grabbed a cookie and was about to take a bite but she snatched it right out of my hand as it was about 1" from my mouth. It's a crazy disease.

Not to derail the thread... but one reason we got LTC insurance early was just for this kind of thing. We saw LTC being more useful early than later. We'll have to decide whether to drop it.

Anyway, yes, diseases like FTD are nearly unmanageable.

 

[harllee]

IIRC your DH has auto-immune problems. Are you concerned about the risk that he might be more likely to catch Covid or some other disease due to being around the other residents at the CCRC? Not meaning to criticize your plans, which sound excellent, but I am interested.

No I am not really concerned about DH's autoimmune disease in a CCRC. They took great precautions during the initial phases of the Covid outbreak. During the worst of it the dining rooms closed and meals were delivered to the apartments. Most everyone who lives there has had the vaccines and boosters. Early on the staff was encouraged to get the vaccines through financial incentives.

I think that I will be unable to care for my DH on my own for the long term. DH has had one total knee replacement and needs another. I cannot handle another one on my own, I hope he can wait until we are in the CCRC for his second knee surgery. In the CCRC I can get meals delivered, I will have house keeping, PT will be there right on site. It will be much easier on both of us.

I want us to get into the CCRC while both of us can pass the physical and mental entrance exams.

 

[W2R]

Thank you for explaining, Harllee!! It sounds like a terrific facility for you two.

 

[Teacher Terry]

When people have a spouse that is declining it gets tougher as you get older to take care of them. By the time my dad died my mom was exhausted and only 73 but 14 years of caregiving is a lot. Personally I am glad that I only need to worry about taking care of my dogs and myself. I noticed that most people in my friend’s ccrc are much older than him.

 

[harllee]

When people have a spouse that is declining it gets tougher as you get older to take care of them. By the time my dad died my mom was exhausted and only 73 but 14 years of caregiving is a lot. Personally I am glad that I only need to worry about taking care of my dogs and myself. I noticed that most people in my friend’s ccrc are much older than him.

In my case I have a double whammy. I am caretaker for both my husband and my mom. I am so glad my mom is in a very good CCRC and that DH and I have come to the top of the waitlist to move into our CCRC. I am so grateful both my mom and my DH and I have the funds to afford a nice CCRCs. If we did not have these options my life would be impossible.

 

[joesxm3]

I am 65. When should I be getting on the waiting list for ccrc? Once at top can you just stay there for years? I seem to remember that there was a fee to get on the list when I looked into it for stepdad. I think they said it could be refunded, but the contract did not say.

 

[Walt34]

I am 65. When should I be getting on the waiting list for ccrc? Once at top can you just stay there for years? I seem to remember that there was a fee to get on the list when I looked into it for stepdad. I think they said it could be refunded, but the contract did not say.

The ones I've contacted said that when you get to the top of the list you can turn it down and still stay at the top of the list. That is, you don't have to take the first offer and you're not penalized for it. I've already been contacted by the one we're on a waiting list for, but only once and that was well over two years ago. But we're still relatively young for a CCRC (I'm 72 and DW is 65) and in generally good health. Most CCRCs do have a fee for being placed on the waiting list, anywhere from $100 to several thousand at others. Obviously that's to keep out the applicants who aren't serious and in my view is reasonable. I don't recall about refundability but I'd think probably not.

 

[harllee]

I am 65. When should I be getting on the waiting list for ccrc? Once at top can you just stay there for years? I seem to remember that there was a fee to get on the list when I looked into it for stepdad. I think they said it could be refunded, but the contract did not say.

The CCRCs I have looked at are all over the ball park on waiting lists. In my area the waiting lists for the good CCRCs runs about 10 years. The deposit is usually a few thousand dollars which is applied to your entrance fee if you move in but you lose it if you never move in. The CCRC where I am moving gives you 3 opportunities to say no. If you turn them down 3 times you go back down to the bottom of the list.

To get on the waiting list where I am moving you have to give them a financial statement to prove you can qualify at the time you get on the list.

I got on the waiting list at age 60 and now at age 70 I am at the top of the list. I turned them down one time but DH and I have decided to take the next apartment that is offered to us.