I also want to mention that a lot of people have had good luck with Board and Care homes which are smaller. I am not sure if those are popular where you live.
The place my in laws live is relatively small, with just one floor. I do feel like the small size has been good for them. For others, it may be that having more people works better for them.
It’s a sad truth that this kind of move doesn’t always work out as well as my experience. In fact, my mom probably should have been in memory care, but my dad couldn’t bring himself to do it, he couldn’t afford it, and mom would have been crushed. I just wanted to let you know that it does sometimes work out well.
Other posters have mentioned, and I wanted to state it, too. When moving a senior to a new place, especially if moving away from a long term place, you may see a serious decline in ability. To my mind, it seemed like FIL had rote memory for so many things in his home of 50 years, he did not have to think about the bathroom, the sink, the shower, the closet, the clothes, where to get a drink of water, the TV (even though it was the same TV) etc. He did a lot on autopilot. When moved to IL he was exhausted by the basics of life, just figuring out the first hour or two of his day. He, literally, was pounding his fists against his head saying he wanted to die, that’s how overwhelming it was. We quickly moved him to AL, though he had been in a large, ranch style (so very long walk from master to kitchen) split level house with a big sloped lot and pool up until the week before. The decline was stunning and a great deal of it felt, to me, like it was simply he had XYZ energy in his bucket, he’d not had to use that energy for ADLs in his own house, but did in the new place.
Speaking of ADLs, read that LTC policy, generally they pay if the person is unable to perform a certain number of the 6 ADLS:
Bathing (not ‘safely’ in your mind, but actually physically capable of doing it)
Feeding (not shopping and planning and cooking, but putting the spoon in your mouth)
Toileting (on & off, etc)
Transferring (in and out of bed and chair, so strength and balance)
Dressing
Continence- the actual control of the functions
Before you make the move, if it is contingent upon the LTC policy, evaluate those ADLs as an insurance company would see it (like putting food in mouth, not able to fee yourself by cooking//planning; I don’t even think the not remembering to eat counts?)
I totally understand your conundrum, my mother lived with us for nearly a decade. The last several with slowly increasing dementia, but the last year or two were Hell. I could not have done it another year. I promised myself I would change things by Christmas if she was still alive and am so glad she died mid-year. Moving her at that late date and late stage would have been miserable for me, miserable and panic inducing for her. I was enable to ‘do the right thing’ by keeping her home until the end, but I could not have survived beyond the end of the year. In many ways I should have moved her to B&C sooner, it was rough, but the move would have been rough in other ways and once she went on Hospice, the end was in sight, so I held on. If only we could know for what time period we need to plan.
Baby steps, OP.
Keeping someone at home is not always the “right thing.”
I have to go to (yet another) zoom meeting but wanted to pop in to say, in all 3 of my parents’ moves, the facility had a thorough evaluation done prior to move in, to determine the best placement (independent, asissted or memory)
My advice is to read Being Mortal.
My mom moved into an independent living apartment - part of a CCRC - and did fine. After a stay in rehab, we knew she couldn’t return. Unfortunately, she wasn’t eligible to enter AL because she couldn’t take care of herself once the door closed - toileting, bathing, getting herself to/from bed and meals. If she’d already been in the AL, we could have paid for extra points or a private aide.
My MIL is in a nice ALF. She’s not social at all, going to meals pre-COVID restrictions is it. She has her issues that we pay extra for, but until or if she shows signs of AD or worsening dementia, she won’t be moved to MC.
A friend moved her mom into the same AL. She was there for a very few months and then moved into memory care. Hindsight is she wishes she’d gone straight to MC. Her mom was borderline and they went with the AL first.
Staff turnover is a thing. If they go 5 blocks, minimum wage goes up significantly and the Corp won’t increase pay.
Good luck.
Hindsight is hindsight.
In retrospect, my siblings and I (and my in-law siblings) all think we waited too long for each of the moves and transfers and change in situations we made. I’ve got a close friend whose experience mirrored mine- who thinks they did EVERYTHING too early, too precipitous, should have waited.
You just don’t know. There are people with mild dementia (or has progressed somewhat) who do just fine in independent living. Their motor skills are fine, they are sociable enough so that forgetting someone’s name or not recognizing the person who sits with them at dinner is not a big deal- they can cover, they have reasonable social skills. And they enjoy the activities, even if they are not “appreciating” the trips the way they would have when they had more cognitive functioning- but they like getting out, and they can get on and off the van, thank the driver, etc.
There are people with mild dementia that just can’t handle independent living. The activities frustrate them because the card games, the trips, etc. are either exhausting or too challenging. They fear falling (maybe because of an earlier injury?) and so going to a concert, an exhibit at the local library, or whatnot just isn’t fun when there’s so much movement required. And the choices at dinner overwhelm them, and having to engage with a waiter is irritating.
You don’t know. OP’s mom may like the hustle and bustle of independent living, relying on the aides to get her where she needs to be when she’s forgotten that it’s lunchtime. Or she may need more time for transitions, fewer scheduled activities outside the facility, limited choices for meals (especially if one of the OP’s kids ticks off the menus a week in advance), etc.
Some of it- frankly- is personality in addition to cognitive functioning. Someone who was very social may like being in the thick of it; someone who was more of a loner may find the meals and the group activities oppressive.
We tried to get our family member transferred out of independent living into the memory care unit at the facility- there were no beds. We were on a waiting list but time ran out so we had to do a transfer (out of state, it was the best option at the time). In retrospect- should have done it sooner. But the perfect situation isn’t always available exactly when you need it.
Hey Guys, I did not intend to imply that keeping a parent at home is the ‘right thing’ for every one or at every time. I put two into a home. Sorry if anyone felt I was parent shaming.
What I meant was that for my mother, it was the right thing that after nearly a decade in my home she did not have to deal with a rough transition to B&C/AL/SNF. I could not have done the home thing much longer and I am glad she died before that transition. Yes, i would have had my home to myself, but I would have been on the phone and driving to her home, too often. It would have been just a different set of needs. We all knew that my mother was emotionally attached to me, it became desperate after Daddy died and especially after the dementia set in.
I am actually taking longer to vent the emotions and feelings I buried (because I had no time to feel them, I had work to do) than I expected. To ‘get over it’ has been a long process. I am pretty self-aware, pretty pragmatic, but I am so darned tired of ‘everyone looking at me’ as in the in laws, the mom, the kids, the grandkids. Everyone needs/needed me and I am loving my quarantine 
My in laws were the worst, because he was mean, but they were far away, so it was constant phone calls (sometimes 20-30 a day from him, yet no one at the AL would declare him incompetent and, guess what, when I moved him to B&C I did not install a phone and told the siblings, no personal phone, that helped.) and flights to deal with stuff. I did not want to be driving to a home to deal with my mother all the time. We are in the boonies, so it would have been a fairly long drive no matter where, and that would have an added chore I would have hated.
We had a rough time as one person’s serious, can’t avoid dealing with it, change segued into the next person, overlapping the next person and it took 4-5 years straight of people in their final aging and dying, plus then dealing with all the paperwork.
I agree with @blossom that it is so easy to realize you should have made a change sooner, it’s tough to tell when something is temporary and when it’s forever, when to stop fighting the inevitable decline, feeling like you are giving up on them, and when you are merely delaying the inevitable. I can also see that one can feel like they rushed things. Basically, it’s easy to feel guilty about any of the decisions because, in effect, we are treating our parents like toddlers, people with lots of opinions, yet not many rights to choose and that is how it has to be sometimes.
You may wish to go in with low expectations. My mom felt that the group in her assisted living was like a middle school clique and wanted no part of it, nor of the childish craft projects being suggested frequently. She waited 7 long years to die. Many of us who have BTDT are quite determined not to repeat our parents experiences ourselves.
@somemom - This: “I am so darned tired of ‘everyone looking at me’”. I felt that way for nearly a decade. It’s a relief to be at this next stage of my life.
For my father’s assisted living they do a complete evaluation at the time the person enters to determine their needs. They will also redo that evaluation after any long absence (like a hospital stay).
Kiddie- we had the evaluations too- but quickly discovered that there is a LOT of wiggle room, much of which is used to meet the facilities needs, not your own.
They have excess staff coverage over a holiday weekend? You’ll get a phone call that they’ve assessed and your parent needs “more help” (you pay the upcharge). They have no coverage over a holiday weekend? Miraculously, your parent has been managing just fine with the regular check-ins and am assistance.
So I don’t put too much stock in these evals. Dementia isn’t linear- and these facilities have conflicting priorities at times.
@blossom great post…totally agree!
Also families do have some say in preference even when an evaluation says AL or MC. The facilities care about liability and if a person wanders, falls often or is a behavior problem, they will insist on MC. Otherwise there is indeed wiggle room. And personaltiy plays a role: some folks like being a leader who is sharper than the rest, and others don’t.
The comment about middle school-like cliques is an interesting one. It just takes one or two kind residents to help with that. Some residents will roll their eyes at a person whose cognitive decline makes a certain game difficult, or try to avoid sitting next to them, that kind of thing. But others may invite the person and offer to help.
I taught chair tai chi at an assisted living facility and one time, had to have a talk with the group about being nicer to a person whose dementia was more advanced than others. This person later went to MC. But at the time, chair tai chi was one of the few actvities she could do, and focused her energy. After our talk, one of the residents asked “Are you asking us to be more compassionate?”
Blossom brings up a good point about digging into what’s included and what isn’t.
My mom had two hospitalizations while she was in the facility. The first time, she fell and they called the squad (before I knew I could decline transport) and was so combative in the ER, that the doc snowed her. She didn’t come out of the sedation for 4 days. Our options were to send her to rehab or back to her facility but with a private duty 24/7 caregiver until my mom was able to respond. We opted to take her back to her facility and thankfully she bounced back to her baseline quickly. The second time was after my mom fell and hit her head. She had a concussion and needed stitches. The facility requested we have a night time caregiver for her until the stitches came out and while they were monitoring the concussion.
Falls really are almost inevitable but we kept reminding ourselves that my mom had a series of falls at home too even with a caregiver or family right next to her.
When we were looking at facilities for my mom, we really thought she would qualify for AL but every single place that assessed her, including her neurologist, felt she needed MC. My mom was a “flight risk” and that automatically meant facilities wanted her in a more structured unit with locked doors. As it turned out, they were absolutely right.
I will say that one of the things that we loved about my mom’s place was that the MC had a large outdoor, fully enclosed, patio that the residents could use when they wanted. My mom always loved being outdoors and it was wonderful for her to be able to “take a walk outside” whenever she wanted. The staff also scheduled activities outside a few times/day so when mom wasn’t safe to go out alone, she still got outside every single day. Their set up had big rocking chairs, tables to eat at, meandering paths, a water feature, and then a veggie and herb garden that the residents helped care for.
My point is to think about what’s important to your mom now and see if those types of activities are included at the facility. If they aren’t, many times the activity directors are happy to incorporate new things into the rotation based on resident preference.
I think that it’s important to be realistic. No place is going to be perfect. The key is trying to find a place where your mom can be safe and eventually happy.
Thanks everyone. I really appreciate your help. I’m going to look into the LTC policy and see about all that next week. And I’m going to continue to hope she doesn’t have to go. If she does I pray we have a better experience.
One thing I hoped I’d hear more of is once in AL or MC, when they keep asking when they can go home, is it better to tell the truth that house has been sold or keep saying otherwise. I’m inclined to tell the truth
My mom was 75 when we insisted she move closer to us. We did all the arranging and I made at least 6 trips to her place prior to the move.
She seemed pretty on top of things. BUT…In retrospect much of that was due to the familiarity of the situation. Her surroundings, the people she saw, the places she could walk to, etc. She was fully independent before we moved (although we did hire someone three days a week to clean and take her out shopping or to lunch).
The move was very difficult. All new doctors, new place to live…nothing familiar except us. This either exacerbated her situation (dementia) or made her more confused…or a combination.
We felt the move really was in her better interest, but sadly, she declined very quickly after the move. But then…maybe that would have happened anyway.
There is often no good choice. We had the privilege of starting early in the process with my MIL. We really wanted her in and AL situation and every indicator was that she’d flourish in the right one. Because she needed some othopedic surgeries, we were able to place her into several top rated places in the area on a rehab basis for several months and check out those resources. For her, money was not an issue. To
our great disappointment, none of them worked out.
It was a deep fear of mine that I’d end up with MIL at our house. Well, it happened, and it was a good thing. For us it worked out beyond expectation. The sad fact about AL homes is that they too often provide poor care. I popped in unexpectedly often, and despite high motivation to place her in my part, I could not do it. I will say that many families are paying stratospheric prices for those homes and saying how wonderful they are—not what I saw. Not for many of their loved ones. That has soured me on AL homes— perhaps very small ones are different. There may be good ones out there. But I don’t find any with money no object. We are looking now for an elderly cousin who can afford most any such home, and her responsible relative is finding the same.
Also, it’s not just the elderly dear one whose health is in the picture. As I have said, it’s often the case, that there are no good choices. We often have to be glad there are choices, or sometimes wish there weren’t any because of decisions Ja i g to be made
With FIL, who had been in charge for many years, he was forced to acquiesce to the decision, and knew everything that was happening, what changes and repairs were made, etc. Luckily we kept him away from the estate sale, he would have gone crazy at the low prices on his valuable items, and blamed us. He did call the police when we would not give him his car He did have some dementia, but not enough to keep him out of the loop. We rented their home for a year and it was so weird, he kept getting friends to take him on drive bys!
MIL was more mentally fragile, serious stroke many years before, was on AD meds, but honestly, it did not seem like she had AD to me, she just seemed really fading away. We never told her as those details would have been incredibly painful.
My mother knew what was happening the last ten years, I was handling it all, but I told her enough to be fair, yet not enough to have her constantly grilling me. The last few years, as the dementia got bad, nothing, there was no reason to share.
I think what you share depends on how mentally there she is and how you think it would affect her. No reason to make her sad or erratically angry, but if it works better for her, no reason not to, it’s very personality driven.