CCRC - How early/late is too early/late?

It is SO difficult to hear this diagnosis, and there is so, so much to process and work through. And for a living situation, I believe there is no single “right” solution. When my DH received his ALZ diagnosis in early 2023, my mind raced ahead to all this might mean for us. As a planner, I wanted to figure out everything right away! The hard reality is that the pace of disease progression can vary greatly.

For what it’s worth, here is what we’ve done so far. My husband was already retired, and I was heading toward doing the same. We were planning to move back to our hometown (a 100-mile move) to be closer to our daughter and son-in-law, and made the decision to stay in a single-family home … for some of the reasons you mentioned., My husband enjoyed gardening and yard work .,.. and having the feeling of a neighborhood.

We made the move not quite 2 years ago, and while his disease has progressed, I’m still happy with that decision. (We are both 74 and in good health except for his ALZ.). My focus has been to make our house and yard as low-maintenance as possible, assuming that he will be able to do less as time goes on. (For example, last summer he did all the mowing, raking, etc. but needed help from me to start the mower. He was good at planting flowers, etc., but needed guidance on where to place things. This winter, we’ve divided up the snow removal - he shovels the walkways because he’s physically stronger than I am, and I’ve used the snowplow on our driveway.). If he is able to do less of those things in the next year, I’ll probably look to hire someone to do those yard things. I’ve already had to find good handymen to do projects my DH had always done in it past, and that was a big change for us.

I remember asking him how to felt for him to not be able to do those things any longer … and I was surprised at his acceptance of the situation. He said, “Well, I wish I could do those things, but I know I can’t, and that’s just the way it is.” So for now, we are staying in this home, because it’s working for him AND I value having our own place. One piece of advice I’ve received consistently is that both our lives will be impacted by this disease, and we need to make decisions with that in mind

That said, I have also looked into CCRC’s in our area, because the planner in me wants to understand as much possible. If there’s one thing I’ve learned, it’s to give myself time to absorb and think through things, rather than to race to conclusions before I need to. (And that’s tough for a person like me who tends to make quick decisions!)

Perhaps something to consider is to what extent your husband is able to understand his situation … and if the two of you are able to talk through potential options for the future. I’ve been following a couple threads in this group about the CCRC option and have found them very helpful … especially to see the pros and cons that are inevitable in any major change.

Hello:
One thing I found out is that most CCRC's have waiting lists that can be years long, so perhaps get on the 'intent' list now or at least start taking tours and getting brochures. Perhaps some of the facilities have places for residents to garden?
All the best. 🌺

The CCRC we moved into last year has villa homes (like duplexes) with small yards as well as apartment condos. There also is a gardening area for residents' use.
Researching your options for the future is wise, and getting on a wait list is a good idea if you find a place you like. You can always say you're not ready if your desired unit becomes available, and you will keep your position in line. Our CCRC is now 100% occupied with a very long waiting list.

To dlynng: Everyone's situation is different so taking the time to research all the possibilities available for you is time well spent. I too feel like I have to have a plan in place to make any future transitions less stressful. It took me about 6 months to finally have a clear idea of what that is. My husband has moderate dementia, can no longer use a phone, TV controller, willingly bathe himself. I started noticing things about 2022. Frequent fender benders, unable to write checks correctly among other signs. Now I cannot leave him alone. That would be like leaving a toddler alone. He would be unable to call for help if he fell, which he has done a lot in the last two years. I have decided to keep him in our home of 45 years. I feel that if I were to place him somewhere other than here, it would not only frighten him, not understanding where he is or where I am but also exacerbate his dementia. So we had our boys move out all his office furniture from his downstairs office and put our bedroom furniture in there. I had to install baby gate at the bottom of the stairs because of the risk of him falling down the stairs. I put a baby monitor next to his bed so I can see when he gets out of bed when I am in another room. In May of 2025 he fell out of bed, hit his head on the nightstand and suffered a subarachnoid (brain) hemorrhage. After being discharged from the hospital I tried to monitor his activities though the night but it was exhausting so I had to hire caregivers to sit with him from 11pm to 7am. It is so important that you take care of yourself. Last December a good friend moved in with us to help care for my husband so I pay her now instead of the agency. This has worked out well for us. The other issue that I had to consider is that he is an insulin dependent diabetic which means I would have to place him in a facility that can provide daily monitoring and administration of insulin. I have taught two of my adult children how to do this so I can get away for longer periods of time knowing that they can manage his diabetes. My plan is to allow him to be in his own home until the Lord takes him. Hopefully that is what will happen.

I can well identify with the dilemma of too early/too late. We are “early” since my husband developed memory issues that were evident to just me in the past year, and then with the appropriate follow-up tests has been diagnosed with MCI due to Alzheimers. We are making adjustments in our life. We live on our dream 13 acres, retired after working hard in the city.

My husband loves being outdoors and has told me he would feel like a caged bird without nature around him. We are in our early 70s, and he is capable of almost everything; however, in spite of his protests, he is adjusting to not driving due to low score on the neurological test. My goal right now is to keep things as happy as possible, as well as understand his desires early on. My mind raced ahead to try to plan for the best possible scenario. We love our place, we love our community and friends, but daughters are hours away and busy with young families, as is specialized medical care in the big city.

Considering the diagnosis, I thought we should plan to be nearer to family. Husband was in favor of staying in place forever. We visited and liked two CCRCs, one near us and steps from the church where he sings in choir, one in a perfect location between two daughters and much nearer to the third. Because we were of two different minds, we sat down with a trained counselor at church who suggested that we get on the waiting list at both places (2+ years) and that we stay where we are as long as my husband thinks it is doable. We are going with that approach because it is at least a plan with options that we can control.

While exploring our property value and thinking about downsizing for a possible move, I was encouraged to speak to our local Caring Transitions person, who helps with downsizing and moving. I now know that the franchise offers a whole menu of options to make transitions less overwhelming. For us, knowing options and putting final decisions on the back burner for now has allowed us (especially me, the spouse) to live more in the moment and treasure the time we have in our home. We can always say we are not ready if the CCRC calls, and we will still stay on their list, so there is some comfort there, too. I should add that deposits at these places are mostly, if not completely refundable: one deposit was reasonable, and the other quite high.

@ocdogmom
I can so relate to so much of what you said here, but you had me at “ocdogmom”. Assume you have dogs. We do, also, and part of my worry is that they may get forgotten outside in the cold. One day, my husband left the house door AND the garage door open when he left to go somewhere. Thankfully, a neighbor called me and said the dogs were running loose in the neighborhood.
But to the more important points you’ve made…it sounds like your decisions about the present and future were made with great care and thought! I agree that in our situation, a move from our long - time home would exacerbate my husband’s dementia. I hope to be able to find caring, qualified people when the time comes to come (and it’s not far off) and stay with him so I can still get out once or twice a week. Since losing my son (aged 51) to glioblastoma last Fall, my volunteer work with my therapy dog at the hospital has become even more important to me, and I need to keep doing it for as long as I can. My husband has good days and not-so good days, and the TV remote, his phone and iPad are more challenging for him every day. (He used to fix all the computers in his office, so this is a very significant change. But I’m learning to do a lot of new things, and have supportive kids, so I am hoping like you, to remain in our home as long as we can! Best wishes!!!

Thanks for your positive feedback. I am so sorry to hear abut losing your son. That must be devastating. I am glad you have an outside source of validation with the therapy dog. My dog, Charlie is my personal therapist. My husband started having problems with his iPhone and the TV controller last year. To use those devices a person has to press the right button or swipe on the phone in the right sequence. Losing the ability to sequence is part of the dementia. He thought it was the phone not working. I learned about this and so any other aspects of dementia care from taking the Companions Course at Teepa Snow.com. This lady has so much valuable information on her website. The online live classes which I took are SO worth the money. There is a course workbook that comes with the courses that you can print out. I took four sessions in all. It sounds like your husband is in an earlier stage than mine who sleeps all day and doesn't say more than 2-3 words at a time. I think that it is wise for you to look ahead to see what resources you will need to keep him safe at home with you. It was suggested to me to buy some "GPS" tracking buttons that in my case can be put on my car so I can find it when I park it in a huge parking structure. But you could also put one on your dogs' collars so if they do get out again, it will be easier to find them. My husband doesn't wander but if he did I would put one on him. I also have a security system that beeps when any of our doors are opened. Best of luck to you and your husband. I hope you are able to stay at home as long as possible. Keep in touch.

@callmegram, you ask a very important question regarding when is it time to consider a continuing care retirement community (CCRC). I hope you saw the many helpful replies from fellow caregivers.

You may also be interested in this related discussion:
- Time to move to retirement home? https://connect.mayoclinic.org/discussion/time-to-move-to-retirement-home/

It is certainly never too early to find out the options in your area. Have you looked into your options further? How are you doing?

@mugsarella, great advice and steps for planning for the future when change of place may be necessary.

@ocdogmom Thank you very much for your reply! I must look into the Teepa Snow courses, and I appreciate you mentioning them. My concerns about my husband’s iPad struggles is getting more concerning, as I always worry about scammers. I do have an Air Tag in his car, he wears an Apple watch and always has his phone, so I’m confident of being able to locate him, for now. I’m going to put trackers on the dogs’ collars, as you mentioned. We, too have a security system on the doors and a few indoor cameras (originally purchased for checking on said dogs when we’re away from the house for a few hours). I guess for now, that’s all I can do, except to be vigilant, and continue to become more educated. I so appreciate your taking the time to write me, and I’m very thankful for this group!