Is staying outside of a facility better during early to moderate stages?

Merla

Like a lot of older people and people with dementia, my loved one dislikes the whole concept of a facility or even senior independent living. She finds even the nicest of places depressing because she thinks the whole concept is sad and seems to have a fear of aging and illness.

So I'm wondering if I might be able to come up with a creative solution for her to stay outside of a facility for a couple of years. I was thinking of hiring 2-3 caregivers and having her stay in a nearby apartment and have round the clock companionship. I know this would be very expensive but realistically it would likely only last at most a couple of years. The unknowns would be if she would accept these companions/caregivers and if this type of setup is actually good for her overall well being. You never hear about celebrities being in facilities so I was thinking maybe there is an alternative.

i should add that there are reasons why I like a high quality memory care facility which include there is more quality control than hiring individuals, the environment is inherently safe and also ironically their world could be larger than on the outside ie more social connection.

H1235

I thinks the lack of social interaction is definitely something to consider. Just because someone is there 24/7 doesn’t mean she is engaged in meaningful conversation at all during that time. Finding a responsible agency that will have people actually show up on time (or in some cases even at all) may be a problem. Finding caregivers that actually interact with her vs spending all their time on their phone is another issue. Dealing with the agency telling you we can’t send anyone today we are short handed, will be a big issue. I assume you live in a bigger city, I don’t think it would be possible if not. Expectations of what she can and can’t do would need to be ironed out (I picture that being a bit tricky) and even what the caregiver will do. You mentioned before your mom is very active, would a caregiver be willing to go on a 3 mile walk with her? Would a caregiver take her shopping, and make sure she has the food she needs? Who would hold the debit card? What if she decides to buy something very expensive that makes no sense, do they let her? I know you are having trouble sorting out access to money to pay for her care. If she is the one to actually pay the caregiver would they report to her and do what she asks them and not you? I think that could be a problem. With limited oversight she could be easily taken advantage of by the caregivers. I think it’s going to be a lot of work for you. Overall it might work. I think I would have a plan B in mind if it doesn’t work. A lot would depend on the caregivers you get.

Gobellago

I am in an ALZ caregiver group, and there is a mix of folks who are doing what you're thinking about doing, and those who have loved ones in facilities. Between both my parents, I've experienced both. The ones that are doing the caregiving outside of a facility often mention that they have a "part time job" managing the caregivers. If you live in an area where caregivers are easy to come by and you have choices including quality folks, this can be quite manageable. If you aren't, you may find yourself spending a lot of time assisting, checking in, covering if they don't show up, and wondering if they are doing what they are supposed to do. Cost can also be a huge limiter. In my area, I was able to find a really nice facility for 2/3 the cost of in-home care. One additional thing I learned: the more advanced the disease, the harder change can be. When my dad moved from home to AL, he was late early/moderate stage. Within a year, we needed to move him to a new room in the same facility; he was moderate stage at that time. After 4 months in the new room, he has quickly become moderate to severe. The move was incredibly difficult for him, it took months for him to "recover" –– it really rocked his world. I can't imaging making that same move from home to a facility at a more advanced stage of dementia, after seeing the affect of a simple move on my dad. To caveat, everyone is different and you never know! Just sharing my experience. ;)

Quilting brings calm

I don’t think going into a facility makes the disease decline faster. I actually think a good facility makes the decline go slower due to social interaction, proper nutrition, medication management, better hygiene. safety inside in bad weather. The staff is there 24/7/365.

Having my parents ( now just my mom) in a facility allows me to have a life. That’s necessary to my marriage and my relationship with our son and our granddaughter.

CaliforniaGirl-1

Everyone's parents and situation are different, mine was very elderly when we were making this decision. We were long distance.

We were concerned about managing the caregivers and what if one didn't show up or quit and who was watching how they interacted with my parent? I was also worried about isolation and how would my parent tolerate having someone there all the time. (She wouldn't). Our experience hiring a driver who could have morphed into a part time caregiver was not successful.

We hoped that after the isolation of being at home and all her friends having either passed away or moved closer to their kids, AL and then MC would provide activities and friends.

One thing I learned was make sure the caregivers are allowed to drive your LO if they come from an agency. Some don't, it is considered outside of scope. So if that is important make sure it is spelled out in advance. And what car will they be driving? Theirs or one you maintain and insure?

Merla

my loved one has such a negative reaction to anything resembling senior living even when it doesn't pertain to her. I find this frustrating. I think that if she could adapt her mentality, a high quality memory care place would be great for her. I found a place I really loved as they had a whole floor of people at a similar stage to her and they looked "normal" and the place looks fantastic and supposedly it's one of the best memory care companies in the country. Yet she found it depressing for reasons that have to with her ingrained view of senior living which is likely generational and her fear of getting older.

Yet at thr same time I think she would do well at this place. She appears to want more companionship with people her age which is understandable but the most i can realistically offer is the companionship of my family. I fear that she is going downhill under my watch but it's hard to tell because I never witnessed her normal environment and just saw her in crisis mode by herself.

She may have been very active in her home environment but I think she was unintentionally exaggerating or maybe she just followed her boyfriends lead. She is moderately active with me but not very active.

I would need to find fantastic caregivers to make living on her own a good situation. And Even this idea isn't what she is looking for because I think what she wants to companionship of people her own age and stage of life which is essentially memory care.

I don't know if she would adapt to even a nice memory care with people at a similar stage obut her because she is so adamant that facilities are sad and depressing even if they look nice, ie friendly pets, nice decor, more activities than what she is doing now. How can I help shift her perspective on a facility? Showing her more options just doesn't seem to be the answer bc I'm showing her the very best in my area.

H1235

Sadly there is probably nothing you are going to be able to say that will convince her. I think you just need to make the decision you think is best for her and make the move. Did you get money figured out so you can do that? My mom is convinced she doesn’t belong in AL. I’ve told her the doctor said she can’t live alone. She wants proof. I give her the paperwork from the evaluation, she said she was just nervous during the evaluation and that’s why she did bad. My brother suggested we get her reevaluated to prove it🙄. It is so difficult. I already second guess myself and wonder if she is in the right AL, do I sell the house, when, what happens when money is gone. Then I have her demanding answers she won’t accept and questioning everything I do. Tells me I’m not treating her right wasting all her money. Sorry I got off on my own little rant there. Bottom line do what you think is best, you probably won’t get her buy in.

harshedbuzz

@Merla said:

Like a lot of older people and people with dementia, my loved one dislikes the whole concept of a facility or even senior independent living. She finds even the nicest of places depressing because she thinks the whole concept is sad and seems to have a fear of aging and illness.

This sounds a bit like my dad. He resented aging and was a bit delusional about his own potential longevity before the onset of dementia which only entrenched this trait deeper. To that end, he deliberately avoided creating a trust/getting LTC insurance/POAs on the advice of his CPA and lawyer. As he started to realize he was having some memory issues, he moved away and purposely did all in his power to keep me from visiting as he knew I was likely on to him and feared I take control of his life.

Mom was in denial and enabled him which complicated my situation. It wasn't ideal, but I was able to sit on my hands for nearly a decade and wait for the other shoe to drop. When it did, I had a Plan B in my pocket ready to execute.

Sadly, that's exactly what did happen. He didn't like it initially. The middle stages with dad were ghastly as he had just enough on the ball to make others miserable in doing what needed to be done to protect him. At some point, I'd frankly had enough of dancing around trying to keep him somewhat content by going through the motions of making decisions that looked as if they'd been arrived at by consensus which he promptly forgot about. I became more authoritative in the situation and found that for dad, ceding responsibilities to another adult reduced his anxiety considerable. YMMV.

So I'm wondering if I might be able to come up with a creative solution for her to stay outside of a facility for a couple of years. I was thinking of hiring 2-3 caregivers and having her stay in a nearby apartment and have round the clock companionship. I know this would be very expensive but realistically it would likely only last at most a couple of years. The unknowns would be if she would accept these companions/caregivers and if this type of setup is actually good for her overall well being. You never hear about celebrities being in facilities so I was thinking maybe there is an alternative.

Have you actually priced this out? Agency caregivers cost about $35/hr. with premiums paid for overnights, weekends and holidays. Figure about $6K a week. There tends to be considerable turnover and issues with no-shows but the agency does do the payroll and rudimentary vetting of their people. We still had one make off with some of mom's jewelry.

That said, my former neighbor and his second wife, set her mom up in his old house with a live-in caregiver/housekeeper whose husband spent most nights and stayed with the MIL while his wife shopped and ran errands. The daughter covered a 12-hour shift on Sundays and hired other aides to cover days off and vacations. I saw a couple of folks who made similar arrangements at the apartment complex where my parents lived temporarily— people who rent a 2 BR apartment and install a LO with caregivers in lieu of a facility. These folks weren't included in any way; in fact, most of the other residents in the 55+ "active adults" complex shunned them.

i should add that there are reasons why I like a high-quality memory care facility which include there is more quality control than hiring individuals, the environment is inherently safe and also ironically their world could be larger than on the outside ie more social connection.

My aunt went into a quality MCF as she was a childless widow, and her sister/guardian was working FT. Auntie absolutely blossomed in the facility. She was in MC, but the place was a CCRC and very fluid in their thinking. Because of her lovely disposition, she spent much of time on the AL side during the day doing their activities and outings for the first couple years.

HB

Merla

I'm just trying to think up ideas because she has such a visceral reaction to the nicest of senior living. Ironically I think that she would do well at the memory care facility I selected. It's very nice and I would be happy not depressed to visit her there and the ambiance is such that I could even bring along my kids. However if she goes into it with a terrible attitude of depression then She might not adapt. She called the place ugly and I just don't think any reasonable person would call it ugly.

I'm figuring out the financial situation. I think that I will be able to work it out but it might involve some confrontation whereas I've been avoiding conflict as much as possible.

I'm very grateful I've only waited 2 years for some crisis to strike and Cause her to change.

sandwichone123

In my opinion she'll do fine in the facility you have selected. When you first enter a facility like that, all you see is "old people," and she will be very unhappy. This is normal. What we tend to forget, though, is that within a couple of days, all those "old people" disappear and are replaced by individuals, some of whom she will like and some of whom she will not like. This is one of the reasons that family often wait a week or more to visit, to facilitate their loved one getting to know their new neighbors and the staff.

​fesk

I haven't seen your other posts and don't know your mother's abilities. You mention early to moderate stages. My mother moved in with me and had a caregiver when I worked. She lived a very active and social life for many years. I think it was very good for her.

Since COVID caregivers are much harder to find. I think trying to coordinate caregivers in shifts may become a nightmare. If you could find a decent live in you would be better off in my opinion. If you did this, and your mother is still in early/moderate stages, it would be important she had a routine and got out to do various things. You could also hire a geriatric care manager who could manage the caregivers for you.

You seem to like the facility option more. Instead of having your mother move in right away and discussing that with her, is there any way the facility would allow your mother to participate in some activities and meals for a while? Could your mother go a few days a week for a while for lunch and an activity and then back home? I have no idea if they have a day-type program or if that could be done, but it might allow your mother to make some friends and view the facility in a positive light. Once she is used to that, the idea of a move might be easier.

Merla

I guess that ideally I'd like some level of buy in even if it's not 100%. Right now it's 100% no. That being said it's hard to get older adults without dementia into AL or even Independent living so maybe I'm expecting too much. I guess that Im hopeful bc she chose to leave her home and move in with me which was her idea

Victoriaredux

I'd take that [her moving in] as her knowing at some level she needs help but it may be the last time she can make a less emotional more rational choice. She may just be emotionally rebelling at what she can no longer understand . And through it all— she sounds just the same. It's tough.

You may have to think the opposite- more rational- if I remember right- you have smaller children and a job - they need to be protected more , waiting for her to realize and accept another change may never happen .

wigmaof9

https://alzconnected.org/discussion/comment/224567#Comment_224567

My Mom is also in a CCRC and she is thriving. Yes, those first few weeks were rough, but she had also just lost her husband of 67 years. Her dementia really accelerated after his death, to the point of scary dreams and delusions. She was calling the police, thinking people were breaking in. But now that she has a 2 room apartment in AL, she is doing so much better and has made friends. The staff is amazing and they call regularly to keep me updated. Yes everyone is different, but she couldn't stay in the big house by herself anymore, that was quite apparent that we needed to do something.

549jb

I was able to convince (which the help of his only child) that taking care of a house and all that's involved, was becoming a chore. With Hot summers and freezing winters living alone was becoming untenable and dangerous. After looking at a number of different facilities, I moved him into an Assisted Living One bedroom apartment near me. His child lives abroad, so you know how that works! He's adjusted well and the stress of his care is now off my shoulders. There was guilt in the beginning on my part that maybe it was too soon. But, now that he has been there for almost 4 months I see that the move was in the "nick of time". He's disoriented at times and confused but that is the nature of the disease. I am now more relaxed and ROLL with it. I'm available to him as well as to the staff and we are all in sync to give him the best life possible. I help him with his phone, take him out for a drive/activitiys, etc.. The rest is being taken care of by the facility. I was initially reluctant to switch him to the in-house Dr. but that turned out to be a blessing as well. They handle all of his needs and I no longer am driving him from one Dr. to the next. They also know how to handle his health concerns better than I did. I thought every ache and pain was a big deal when in reality he just needs someone to listen. It's a long haul for sure. I am able to have a "life" again and have rejoined some activities that I had dropped because of have to care for my LO. Al the best to everyone that is going through this difficult time.

JM27

https://alzconnected.org/discussion/comment/224625#Comment_224625

Hi Merla,

Getting the PWD to buy in is us needing their acceptance that we are doing the right respectable thing.

My father thinks he is perfectly fine and wants to go back home now telling me daily I need to get on the computer and find him a flight back home. He doesn’t understand he has memory issues that will not allow him to care for himself any longer. Even if I tried to explain to him he would only remeber bits and pieces if I’m lucky and he is t in a frame of mind to make a decision on his well being.

Unfortuately I have also tried to get his approval and it does not work. My heart breaks that I can not let him stay in his own home 1100 miles away from me.

I am also struggling with the decision of bringing in caregivers into my own home to try and bring companionship so I don’t have to put him into a home yet.

For me I feel it will bring him great anxiety and anguish as he knows he still has a home and is worried about his home.

This is not an easy decision for you I understand. I know in whatever decision you make it will be what is right for you and your mother safety and well being is key.

Blessing to you and your LO.

Merla

https://alzconnected.org/discussion/comment/224619#Comment_224619

I do prefer a facility over staying at home for my loved one but wanted to consider other alternatives. The setup you had for your mom sounds great. I find the whole idea of getting caregivers a little intimidating because my parent moved in with me from out of state so I would be trying to build her a life from zero which just seems very hard as opposed to trying to maintain or extend her previous lifestyle a couple more years. If she hadn't needed to move and could have stayed in her regular environment with her known friends then caregivers might have worked. A live in sounds like an ideal option which might minimize the constant battle of getting her to accept caregivers. I don't have the extra space though unless the caregiver would share a room with my parent which is guessing isn't acceptable accommodations for a live in caregiver. If one can afford it a live in caregiver seems like a solid option for the some years.

Immersedforlife

> @Gobellago said:
> I am in an ALZ caregiver group, and there is a mix of folks who are doing what you're thinking about doing, and those who have loved ones in facilities. Between both my parents, I've experienced both. The ones that are doing the caregiving outside of a facility often mention that they have a "part time job" managing the caregivers. If you live in an area where caregivers are easy to come by and you have choices including quality folks, this can be quite manageable. If you aren't, you may find yourself spending a lot of time assisting, checking in, covering if they don't show up, and wondering if they are doing what they are supposed to do. Cost can also be a huge limiter. In my area, I was able to find a really nice facility for 2/3 the cost of in-home care. One additional thing I learned: the more advanced the disease, the harder change can be. When my dad moved from home to AL, he was late early/moderate stage. Within a year, we needed to move him to a new room in the same facility; he was moderate stage at that time. After 4 months in the new room, he has quickly become moderate to severe. The move was incredibly difficult for him, it took months for him to "recover" –– it really rocked his world. I can't imaging making that same move from home to a facility at a more advanced stage of dementia, after seeing the affect of a simple move on my dad. To caveat, everyone is different and you never know! Just sharing my experience. ;)

That's called transfer trauma. With each move away from familiar surroundings they inevitably decline.

DPH

I was told yesterday by the memory care facility that my mother is needing hospice care. When they evaluated her she has slowly lost weight and has trouble talking where she can be understood. She is in the advanced stages of Alzheimer’s. It
comes as a shock to me because she eats well when I am with her and I can understand her most of the time. Before moving her into this facility 2 years ago I had been her caregiver. I’m having thoughts of bringing her back home. Has anyone gone through this?

M1

Welcome to the forum DPH. She would probably still need hospice care, even if you took her home. I have thought about it too, but I could not handle the 24/7 needs without help.

It sounds like you are struggling with the fact that hospice is indicated, I wonder if you are prepared for her to die? Having hospice doesn't mean that death is imminent, but means that the focus is making her days as comfortable as possible as the end of life takes its inevitable course. That is not a bad focus, regardless of the timetable.