CCRC's. Good idea or bad idea.

Pietas61

New to Forum. Me 62/She 56. She was just diagnosed with early onset 2 days ago. We will be relocating from South America back to the USA. I am open to different States as we do not want to return to cold dark Alaska. (WA,TX,NV,UT,AZ, maybe FL.) I have looked at a few of these and they seem to offer many different options & price points. Is this a good plan so long as we can find an affordable the entry fee? Where do I look to see what others who have moved to CCR's have to say?

SDianeL

We live in FL and I am currently looking for a Memory Care facility for my husband. Prices I've found in the Tampa area are $5000-$7200 per month with initial fee of $3500 plus you furnish your own room/apt. That's for one person. When I asked on this forum awhile ago about both of us moving into assisted living, most of the answers said not a good idea for me to move there with my DH unless I needed assistance. He's Stage 5 going into Stage 6 now and I kept him at home for 18 months, and was planning on looking into placement when I could no longer take care of him, but last week was diagnosed with aggressive cancer and am having to place him sooner while I go through treatment. Here's a good article I found about a couples program in WA state. I'm going to look for one in Tampa area. When time comes for her to move to Memory Care will you go with her or remain in AL and just visit her? https://blog.highgateseniorliving.com/can-couples-live-together-in-assisted-living#:~:text=Yes%2C%20Couples%20Can%20Live%20Together%20in%20Assisted%20Living&text=Because%20these%20communities%20offer%20higher,in%20the%20assisted%20living%20community.

harshedbuzz

@Pietas61

It's really hard to say.

I know people for whom a CCRC worked really well. One of the men in my support group was a retired physician who moved into one before his wife developed dementia. As she progressed, he was able to hire staff to help with her in their independent living apartment. Living in the independent living section of a CCRC is much like living in any apartment for the most part. When he needed hip replacement, they made the decision to move to the AL apartments with extra help coming in as needed. As her care needs became too great, she moved into the campus SNF. The CCRC closed their MC unit a few years after the couple moved in, so the SNF was the only option. I suspect he'd have moved her sooner if they had a unit with dementia trained staff and informed programing. It wasn't ideal but she was well cared for and her husband could walk to visit her and they could have meals together until she could no longer be appropriate in the dining room.

This particular CCRC has a cognitive screening to "weed out" PWD as they market as an "active adult community" and their business model assumes residents will be fairly independent for several years before needing higher levels of care. I would have liked this for my mom, but dad would never have passed the testing.

Two things I would consider in moving:

If you may need the safety net of Medicaid for her care at some point, I would look for a state that allows Medicaid funding to pay for MC-- not all do and not all that do have enough such rooms available to meet the need.

I'd also consider state income taxes and cost of car ownership.

HB

Pietas61

https://alzconnected.org/discussion/comment/189674#Comment_189674

I am so sorry for your recent diagnosis. They say god never gives us more than we can handle but I am on the fence about that as of late. We don't want to go back to AK even though I lived the dream there for 33 years/17 with my wife. It's just too damn cold & dark for a person past their prime. They are having record snowfall in Anchorage this year and it's a real mess. Shoveling snow is my least favorite exercise. One of my sons and her daughter & grandaughter live there. Her daughter will likely follow us so long as it's a decent economy and warm. Having a hispanic support culture around her would also be great as she is bilingual and from Ecuador. I think she really needs her daughter/GD in her life for support at this stage as she loves them dearly. I want to move us to a townhouse/condo/independent living for the time being so thank you for the future assisted living considerations. I am quickly learning everything about this disease outside of relationships is money, money as far as quality of life. We are 62/56 so no SS yet. I will file for SSD soon for her. I may have to claim mine early. I was waiting until 67 as I assumed she would outlive me. She is the most beautiful, sweetest, kindest, educated, most humble person I have ever met. I owe her for saving me from myself with her love. So I will be there holding her hand throughout this journey, so long as I am here to do it, as I have some health issues of my own that could impact my longevity. Did you keep your husband in your own dwelling without ALZ support as long as you could? Maybe the best option for us is to do this? I am trying to figure out whether a townhouse/condo vs a CCRC at this time is best which is overwhelming per my own ignorance about this disease and what the future holds.

Iris L.

If your wife worked in the U S she may be eligible for Social Security Disability Insurance.

Iris

Jeanne C.

Hello. I echo HB's suggestion that you look into states that have advantages for cost of living and potential for Medicaid if needed. The American Council on Aging has a useful site that includes lots of information about each state's requirements:

https://www.medicaidplanningassistance.org/

When we were looking for a place to get ready to retire, we moved to Delaware. We wanted to still be reasonably close to our east coast family and Philadelphia (where I occasionally need to go for work). We're in a fairly affordable 55+ community with low taxes and single floor living space. The community handles lawn care and snow removal. What we hadn't counted on was my husband being diagnosed with FTD at 64 just 5 months after our move. We have been incredibly lucky in our state choice as we now have Medicaid coverage for in home care (not all states offer this) and a host of other benefits. I'm not campaigning for Delaware, just suggesting that you take a good look for a place that can be advantageous as things progress.

Good luck to you in planning your move. And all the best to your darling wife.

catminor

My Mom has been at a CCRC (buy-in) for almost 6 years, and I'm in the process of moving her to a Continuing Care Community (monthly).

Most CCRCs have requirements that include able to live fully independently, with no cognitive decline diagnosis. The members are all independent living, and as their need for care arises, some CCRCs have a Home Health Agency to provide assistance in-home. Predominantly, CCRCs do not have separate housing designated for AL or MC, although I'm sure there are exceptions.

My Mom's current CCRC does have a SNF on campus, but only 11 MC beds, which are always full. Anyways, the members only get 90 days SNF included in their membership, then have to pay full price, and it's much more expensive than other SNF available. Their AL Home Health Care option is so expensive, that it was not a reasonable option for her to remain at this CCRC.

I am thrilled with the new CCC we found, close to me in CA. I really didn't see the point of another buy-in, even though my Mom doesn't have a diagnosis yet. The CCC has Independent Living units, AL units, and MC units, it's a monthly rent, and is much more reasonable in cost. The residents are able to remain in their IL units for the first 2 levels of AL.

Best to you as you search for the place that best fits both of your needs. I hope you can find a place like I found for my Mom.

harshedbuzz

@Pietas61

When you do start to look, make sure you tour each area of the CCRC. I found in touring that it's pretty rare that a community operates each of these "best available". My friend's mom's place in Lancaster Co, PA had terrific IL and AL but their SNF/rehab was mediocre compared to what she's seen elsewhere. Her mom was in an IL for 20 years but needed the SNF twice- once from a broken hip and once at end-of-life when she contracted COVID. A CCC I looked at for dad had great IL/AL with a Y and a preschool program onsite for volunteer opportunities, their hospice was best-in-class but their MC was run like an afterthought. A few of the more corporate places I toured would offer to show you around the AL/personal care side of the building saying "memory care is just like this"-- you need to observe staff interacting with residents, look at meals and also check to see if the activities look appealing.

Another part to this is the language piece. If your wife learned Spanish as her primary language, you can expect that she will likely retain that longer than English she learned in school or as a young adult-- memory tends to be LIFO. Another friend's mom with dementia was born in Germany and learned English (to the point of fluency) in her teens when she came to this country. In the later stage of dementia, she "lost" her English at times. My friend did luck out and find a German-speaking aide to care for her during the day until the end stages. My friend's German is shaky but she was able to rely on the skills she learned as an ESL teacher.

Many LTCs employ recent immigrants and often you'll find one language group predominates as these jobs are often filled by word-of-mouth. At dad's place, many of the staff spoke Hindi but I toured places that had aides speaking Spanish and Russian. With the progression of the disease, auditory processing can tank which means a Spanish speaking aides would be helpful. My aunt's MCF had a number of ladies from Haiti and I suspect she had trouble understanding them. And vice versa, my aunt had a pretty serious Boston accent and her "boyfriend" reverted to Yiddish a lot.

HB