Considering move into Assisted Living for both of us

Maru

DH has AL, probably stage 4. He is 90 and I am a couple of years younger with my own health issues but still an active senior. Our children are concerned about 2 things: firstly what will they do with their father if I am suddenly incompacitated or die, and secondly they see the strain this is putting on me. In all honesty, I have been secretly wishing that we lived in an apartment or somewhere that I did not have the responsibilty of a home to maintain. As all of you know, or will know, dealing with Alz by itself can be more than challenging and having to make every single decision re: household and yard maintance is overwhelming even for those younger than I.

My thinking is thus: active senior living is an option but there is still the problem of moving DH again if I keel over because I don't think he could live alone in such a place. On the other hand if we both move into assisted living together, if I become incompacitated or die, he would already be in a place where they would watch out for wandering and such .

The negatives are all for me…smaller space, less alone time, being among a largely less active group of people. The positives for me…no house or yard concerns, no meal planning, no cooking, no housework. Oddly enough we actually save money. The cost of assisted living with every that is covered, is less that our average montly expenses including property tax and insurance.

I appreciate the wisdom of this group and look forward to your comments.

H1235

My mom’s assisted living offered a lot of freedom. Residents could own a car and drive (I don’t think anyone did) or take public transportation to go shopping. On the flip side there was very little monitoring to make sure mom (who was not capable) didn’t leave. They would have stopped her if they saw her trying to leave, but she could have slipped out without notice. You might try to look for a facility community that offers different levels of care. Something where one building is independent living another is Al and another mc. They would all be managed together, with easy transition from one level of care to another as needed. You might also find that you could live in Al, but join in the activities offered by the independent living community. Do your children live near by? I ask because if something were to happen to you would they may want to move him to a facility closer to them. Have you taken care of legal matters for yourself. Have you appointed someone as your DPOA, just in case. In my area some facilities can have a long wait list. If you are thinking about it at all, don’t wait too long. At almost 90 I think it’s time to make your life a bit easier and get rid of the house. I assume this would probably make life a bit easier on your children. Do they help with home repairs, check in often, bring groceries…

JeriLynn66

@harshedbuzz has experience with her Mom and Dad in a similar situation. Hopefully she will be along to share her experiences as well. Wishing you the best.

harshedbuzz

@Maru

When my parents moved north when dad was in the middle stages of dementia, mom and I explored a lot of different options.

When you say "active living senior community", what do you mean exactly. I can think of 3 very different communities mom and I looked at that market themselves as such.

The first was a 55+ Active Adult apartment complex where they initially landed while we figured out next steps. They had a lovely apartment with amenities like a pool and clubhouse. But aside from a van service that made a couple trips each week to the grocery stores it was like living in any well-run apartment complex except that everyone was over 55.

Mom decided to buy a twin home in a different 55+ community. Their HOA fee includes lawn care, garden mulching and snow removal and amenities like pools, gyms, clubhouse, etc. Mom still has to arrange things like gutter cleaning, interior paint, HVAC service, etc. This community is very active with a lot of clubs and activities, but what I've noticed is that the folks who are engaged in all these activities seem to be on the younger side (60-early 70s) and not particularly welcoming to newcomers who are older. When I take mom to the pool, I (I'm 68) get lots of folks starting conversations with me and inviting me to events but mom is invisible to them.

My first choice for my parents would have been a Quaker 55+ continuing care community. The campus has all the amenities and even more clubs and activities as where mom lives now but they offer services on the campus that allow residents to age-in-place with a range of options from 2 BR independent living apartments with available dining plans and housekeeping as add-ons; AL apartments that offer assistance with hygiene, dressing, meds and meals; Personal care suites which includes a secure wing for PWD; and a SNF for people who need skilled nursing or rehab. They also had a car service for appointments and minibus that had a daily schedule for shops, houses of worship and events in the area.

One of the men in our support group lived in an IL apartment with his wife until her dementia progressed to a point where she needed professional care and she moved into their MCF. It was nice because he could still have her visit the apartment, have meals together or go swimming at their pool. One nice thing was that when they both moved to AL because of his mobility issues, he was able to hire staff he already knew to stay with his wife when he needed a break. Much as I wanted this option, even if mom had wanted it as well, they required a cognitive evaluation as part of their interview process. They will allow a PWD to stay in the community, but they do not offer residency to anyone with dementia.

HB

tucson anne

Harshed buzz's last comment about the Quaker community (must have been a Kendal, right?) pertains to the life care communities that require a buy in and then guarantee they will keep you no matter what your level of needed care. There are now communities that offer three levels, independent, assisted and memory care that are "contract models." We have them in Arizona; several of the Front Porch communities in California do too. And there are others. No buy in, no guarantee of continuing care, though I believe residents would have first choice of available AL or MC paces. They don't have the financial protection of the buy-in model, but you also don't have to pass any kind of memory evaluation. You can choose to live in the independent living, hiring care to come in; you could each live in a separate part of the facility. I suspect, however, that most are for profit, which means inadequate staffing levels (we have to give those hedge funds their 10% returns). I have looked at those options in Tucson but have not liked the attached memory care portions. I also thought I could try with my husband with me in independent living, but realized that he would get so lost in the facility that he could never leave without me or without a caregiver. So I'm still home, with caregivers for him. Maru can keep looking to see if those exist in her state!

Quilting brings calm

My mom and Dad lived in assisted living for 5 years. She didn’t drive while there, but he did until the last few months. They did their own shopping when they felt like it. They weren’t held captive, just asked to sign in/out so the staff knew who was in the building and who wasn’t. Meals were in the dining room but they did have a microwave and refrigerator. Housekeeping, laundry, medication management, transportation to local stores and doctors could be provided. Activities were available. There were always people of a similar age to talk to if you went to the common area.
I think it would be a great idea for you as long as you have a plan B for him such as extra caregivers or a later move to MC or a SNF.

Maru

The facilities that I am looking at either have a memory care wing or are close to memory care. I am already getting static from several of the kids on such a possible move, but as I told one today no one but a caretaker of someone with dementia can understand the stress. My biggest fear is that I die suddenly, then what? That is the great unknown and how do you plan for that? Even bringing home health workers or helpers into the house means I have to do all the research, find the people, etc.

SDianeL

I would do what is best for your DH and for you. It’s your decision. I think the AL with MC wing facility makes the most sense. MC provides 24/7 care in a locked environment. The caregivers are more trained on how to care for PWDs. You can still visit and have meals together. While he is being cared for you can get much needed rest. You can participate in as many or as few activities as you choose. Your children may never understand or agree with your decision.

Michele P

https://alzconnected.org/discussion/comment/253728#Comment_253728

Your post hit a chord. Until someone is the full time care giver, he or she has no idea what it is like on a daily basis. You are the caregiver; you make the rules and decisions. If your children don’t like the memory care option, they can choose to move in and care for their father. I lived this with relatives when caring for another relative. They had lots of advice and visted a few times a year at best. None were willing to assist more than that. You do what is best for you and your loved one. If they want to make decisions, they have to take over the care. Only then will they realize what is involved and will want out of that decision quickly!

harshedbuzz

@tucson anne

So close. LOL. I live in an historically Quaker area; there are 3 Meetings within 4 miles of my house. We are also blessed to have 3 Quaker CCRCs in that same 4 miles. The one that hosts my IRL support group is a Kendall that is especially regarded for their in-house hospice program. The lady who hosts the group is retiring to move near her son and plans to move into a Kendall community near his home. While this CCRC does have active adult activities, a branch of the Y and a daycare center for children, the number of active independent seniors vs those needing care is very small.

The one I liked for mom is an independent nonprofit with a bougier vibe. I know a few people who have lived there— the place skews well educated retired professionals. Of the 3 folks I knew who lived there, one was a retired pediatric ophthalmologist, one (a PhD scientist) had hired my DH and the third was another PhD scientist who was part of a wine tasting group I used to go to. That said, what I like about this one aside from the interesting residents and activities is that they share a campus with Pre-K—8th school and have events with the children. Mom's a retired teacher who loves kids— it would have been right up her alley. This community is the epitome of hospitality-model IL/AL with SNF/rehab/MC being very small and only serving community residents.

HB

harshedbuzz

@Maru

I'm sorry you aren't getting the support you deserve from your children. I must be an outlier; I was the one pushing mom to place because I saw the toll dad's care was taking on her and I didn't know the half of it. The way I saw it, dementia was going to take one parent from me, but it sure as h*** wasn't going to get them both.

Where's the disconnect? Are they distracted by their own lives? Are the in denial of his condition? Unaware of the degree of care he needs because they're not participating? Do they generally work well together in a crisis? Are they keen to preserve assets for their own future inheritance?

This is totally your call to make. Making the move now would give you some peace of mind knowing that your carefully chosen Plan B is in place should something happen that would require them to take over this responsibility. By making the move now, you would spare your DH the disruption of transitioning without your assistance. It would be a gift to your children even if they don't see it that way now.

HB

Maru

https://alzconnected.org/discussion/comment/253769#Comment_253769

Harshedbuzz…that is exactly the point. We would be in a place where i can continue to care for him for as long as possible. Help is right there not a phone call away and I am relieved of all other material responsibilities, meals, activities and such. I actually think he would thrive as they have music right there, guys to join him watching sports and so on.

Quilting brings calm

@Maru

Have your children toured any of the places you are considering? I ask because until people actually see assisted living communities, they often think of them as the nursing homes of the past: dingy, dirty, depressing. ALs these days are usually nothing like that.

Are they thinking of themselves as in they will need to rent a hotel room to visit you if they live far enough away? Or that they won’t be able to gather in mass in the AL apartment. That’s their problem, not yours. FYI- some ALs have a private dining area if a family want to occasionally eat as a group.

Have they mentioned exactly what their concerns are?

I would tell them that you are moving forward and that you have a list of furniture and other large items that won’t be going with you- would they like to take turns picking out items from this list to take home? Emphasize that your downsizing now leaves less for them to do later.