Retirement communities -- have we discussed this?

Parent Cafe
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Yes, covid was awful. The CCRC my folks lived in shut down the day after dad’s funeral so I took mom home to my house because we couldn’t have her go home and have none of us visit her for the indefinite future. Mom lived with me for several weeks and then my sister had a turn for a few weeks and then we rotated mom every night so each of us had mom (there are 7 of us kids). It worked for awhile but mom found it confusing never knowing where she was going next (hard to blame her).

Compared to having her living alone in her CCRC with no visitors and food being delivered to her unit it seemed the better alternative until the CCRC opened up again and allowed visitors again. Then we took turns sleeping over and hired companions to be with her.

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22

Covid was this society’s first experience with such a public health crisis. Everyone was pretty much flying blind and trying to do their best. I don’t think using it as a yardstick for future decisions is particularly helpful.

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23

I’m not sure I agree. CCRCs are close communities of older, vulnerable people. As such, they have to take measures like lockdowns if and when there are serious contagious health conditions that are a high risk to their communities.

Recently it was covid but it could be measles, avian flu or who knows what next?

Elders are very isolated anyway and the combination can very very very challenging. Caregivers (which several of the elders have) can be vectors, bringing in disease and it can spread very quickly.

The CCRC had several little flares of covid while mom was there and they’d try to make whatever area where the covid case was a bit more “locked down.”

Every time someone came to skilled nursing from the hospital, everyone who went into the room for like a week had to put on mask, gown and discard when they left.

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24

Some people make the move when their ability to socialize (regardless of desire) is diminished. Lower energy, difficulty speaking or mobility challenges, a feeling that they are no longer who they are. I think this needs to be a consideration. And it doesn’t mean you have to move when you are young – but you need the faculties that allow you to interact. (Can you still play bridge, for example!)

25

Feel the same way. My kids are not yet settled so not clear where we might end up. At this point, my house is manageable and I have friends nearby. The CCRC or other over 55s in this area are very expensive and I don’t want (and luckily at this point) don’t need to move to somewhere cheaper and more isolated. DH has some mobility and health challenges so all this may change sooner than I think. We have a few stairs to enter the home but only 4 to navigate between main floor and bedroom/bathroom. Already looking at options if needed to conquer those hurdles.

26

But would experience of COVID-19 inform decisions if something like that happens in the future?

Also, could the architecture of the place matter? E.g. would a place designed for things like dining and other activities being able to be done outdoors be better able to control a contagion without being as socially isolating for the residents?

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In HI, there was the ABILITY to have outdoor dining and other activities pretty much year round but the CCRC opted to just shut things down (including NO visitors) and deliver meals to residents and keep everyone in their own individual units which was terribly isolating. The CCRC has to make choices “for the common good,” and may not allow residents much say in such decisions, unfortunately.

28

My mom was in a Greenhouse Project facility (assisted living) where there were 3 interconnected “houses”. The houses really were shaped like wheels, each with a small dining room ( 12-20 people) with the bedrooms radiating out from the center, like spokes.

When covid hit (in 2022) the just closed off the one house where there was a positive test. Everyone in that house still could mingle. As could the other 2 houses. Helped contain the spread.

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29

I love the concept the the Greenhouse Project and wish it had spread more widely and that there were options in Hawaii that had the interconnected “houses.” That sounds like the best of both worlds with smaller dining rooms. Sadly, the CCRC my folks lived in, it was all condo-like and a casual dining and a formal dining room. No smaller dining areas in independent living unless you reserved a private dining room (believe there was an extra charge).

Smaller 12-20 people dining would encourage more interaction, I believe and be less impersonal. The crazy thing is that one tower only had ONE elevator and when it was broken, they had to carry residents that couldn’t walk down and back up to their independent units. The tower my folks lived in fortunately had two elevators so one always was operational even when one was under repair.

It’s crazy the things that make a CCRC actually unsuitable and unsafe —I would think having a tower with just one elevator would be one of those things but it’s a highly sought after CCRC, with a long waiting list.

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That seems like the architecture of the towers forces residents into and through crowded areas (elevators and the hallways leading to them) to get in or out of their residences, which seems to make it difficult under COVID-19 conditions to get to outdoor environments for socializing without passing through crowded areas that increase the risk of spreading COVID-19.

Yes, under non-contagious-disease conditions, having only one elevator in a residential tower with many residents not capable of using the stairs seems like a bad idea.

31

We’re actually in the midst of moving my 80-year-old mom to a senior residence near us. My dad passed away unexpectedly last fall, and their four acres out in the country is too much for my mom. My small city has a wonderful senior center, and that has attracted quite a lot of senior housing, ranging from independent living to skilled nursing. My mom is looking forward to social activities, volunteering at the senior center, attending exercise classes, etc. I’m looking forward to having her be only a 7-minute drive away. But we still need to clear the house and barn and sell the property . . .

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32

My mother was in an assisted living at 92. She loved the schedule and programs but after 2 years her dementia prevented an interest in anything except eating.

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33

Yes, by the time my folks moved to CCRC in their kate 80s they were only interested in visits by their kids & grandkids and great grandkids (us) and food. We tried to be sure that one of us visited them every day.

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34

Adding my experience with them: my parents live in a wonderful non-profit community that is fabulous.

The type of community matters immensely; my grandmother moved to an Aegis facility in the 90s that technically was an independent living community, but in reality operated like a sad nursing home. It was institutional, rather sterile and lifeless, and it was depressing to see her there. (It was not a non-profit.)

Where my folks live it’s a wonderful mix of people from all walks of life, who are incredibly engaged with lectures and discussion groups, a robust library, concerts, and a very full slate of resident-organized interest groups and activities. There’s a state of the art woodworking facility, art studio, gym and pool, fitness classes, art everywhere (many people leave paintings and sculptures to the community in their wills) and is full of interesting people from all backgrounds (and income levels).

Communities that have continuing levels of care are also the best places to be. Thus you won’t need to move if you need memory care, or have higher medical needs. What is essential to understand, however, is that the majority of these places often have guidelines where you must be able to live in independent living when you join; i.e. you can not move straight to memory care from your current home. (There are places where you can move straight to memory care, but your options will be strictly limited and will be closer to the “institutional nursing home” variety.)

The best communities (i.e. not the fanciest, but the most caring, well resourced, places with the best long term, low turnover staff, solid financials, etc.) will have waitlists. Waitlists that are 2-5 years! So it is best to put yourself on a waitlist well before you think you might want to move, and if your name comes up you can decide if you’re ready, or ask them to give your spot to the next person on the list and take the next spot in the queue.

Non-profit communities are IMO the best. Places that have significant resident involvement, where residents are on the board, they run and organize interest groups, and they are “community minded” first and foremost.

** One key thing I’d like to mention: move before you think you “need” it for a few reasons.**

  1. Downsizing, making decisions, moving, unpacking and setting up a new home are vastly easier when you have the physical and mental bandwidth to do so. My parents moved in their mid 70s (“early,” but that is because my mother can not live independently due to an aneurysm years ago). While they were perfectly capable of living in their home that had been built with Universal Design principles (e.g. hallways wide enough for wheelchairs, levers instead of knobs on doors, a roll in shower, special towel bars installed discretely as grab bars, etc.), if something happened to Dad, Mom couldn’t live there alone and Dad decided he wanted the peace of mind that came with moving at that time. If something happened to him, she has her friends, all the support she needs, she’s in her home, she won’t need to move and be uprooted in any way.
  • They have friends who are in their later 70s, early 80s now, who were just as vigorous and healthy as my Dad was 6-7 years ago, but now the prospect of prepping their homes for sale, making all these decisions, all of the labor and time and mental energy to do so has been really, really awful for all of them. All of them wish that they did this sooner, it has been very hard.
  1. When you join a community at the time in which you have the bandwidth to really join the community, your quality of life will be so much higher—both when you move, and for the years down the line. You want to join when you can meet other people, go to dinner together, join groups and activities, and have a full life and make friends and it is home.
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35

Adding something I wrote elsewhere:

There are places such as this that are specifically not for profit and yes, do have commitments in place to their residents that no one will be turned out for lack of funds. These are not nursing homes. They often are comprised of a high percentage of “independent living” apartments, with a wing or floor of memory care apartments (built as such to provide the most comfort for people with such challenges, where familiarity is essential), and sometimes additional space for medical recovery and OT, PT, and speech therapy.

The “buy in” amount varies quite a lot in non-profit communities, particularly because those communities have explicit values written into their charters around providing housing of multiple types for people of different incomes. Thus there are studio apartments, one bedroom and two bedroom apartments, and the entrance fee may range from $30k to over $1M. Monthly fees can range from $1000-$8000 a month depending on the apartment you live in. The monthly fee covers everything: utilities, fitness classes, the wood working shop, art studios, gym, daily outings, the in-house library, credits to the restaurant and cafe, the barber and salon, etc. etc. It is very extensive.

My folks live in one; one of my parents would not be able to live independently if something happened to the other. However where they live now, this parent could live on their own in their apartment, because the supports are in place for anything they may need.

I was pretty shocked at the entrance fee; yes, it was just over $1M. (They live in a very HCOL city, and they sold their home and used the profits for this.) And for that they have a gorgeous apartment on a top floor; it’s a 2 bedroom plus an office, because they wanted to be able to have guests and wanted it to be expansive. In the city where they live, a comparable apartment in this neighborhood could be $2M-$3M.

The peace of mind, for both of them, is priceless. They have a vibrant community full of friends, and a great life there, and if or when both or either of them need extra support, it’s already there. If they have physical issues, or need someone to help them with anything day or night - it’s there; they won’t have to move into a nursing home, the supports allow them to stay in their own apartment, in their own home.

As a non-profit, and with their charter, there are extensive fiduciary responsibilities to their residents. It is not a vast company looking to cut corners and widen their profit margin; their commitment at all times is to ensuring that the residents (who also serve on the board) are the beneficiaries of all long term planning and operational decisions. Additionally, in their community—if someone runs out of funds after living there for years, they will never be turned out; there is a decades long tradition of residents donating to ensure that all are taken care of if they may need it.

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36

This is a weird one, but if you’re looking at a more traditional independent/assisted living facility for yourself or a loved one, be sure to find out about locks on doors. The first facility my in laws were in had bracelets/necklaces that were programmed for the resident’s room and for facility doors (to get in the building). Family members could purchase one for themselves, but it only opened the resident’s room. Staff had access to all doors. At both facilities where my MIL moved after the first, there are no locks on residents’ rooms. That would have been a dealbreaker for me, but it wasn’t my call. I am very uncomfortable with that, and I would not live in or choose to have my loved one live in a facility without locks. This is 2025, and computers allow for security plus necessary access.

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37

Bookmarking this thread. There was a news article not long ago that a gentleman lived in a complex that IIRC was a buy-in complex (not sure about the specifics). The complex was sold and the new owners raised the fees dramatically and said either agree to the new contract or move in 2 weeks and take a much smaller portion of the value of the property they lived in.

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38

There was a piece about CCRC issues like this on CBS Sunday Morning. It was pretty eye opening.

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I think that is what I saw. And another one went bankrupt. People who bought in with the expectation that they’d get it (or most) back if they left (or their heirs when they died) were up a creek.

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My parents unit had locks on doors and if the keys were temporarily lost, you could ask front desk to let you in (like hotel or dorm). You had to pay for each key you got. Only skilled nursing didn’t have locks and you likely had a room mate. By the time folks were there, they mostly wanted comfort of to try to get back to where they had been living.

One other thing we learned—once you consent to Assisted Living, the CCRC decides if you need to move to another level of care, even over objections of family & resident.

This is one reason we kept mom in independent living with 24/7 companions until she was hospitalized and discharged to skilled nursing.

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