Assisted living or in home care?

I think you're making the right decision. With your mom's declining memory, having her somewhere where she's safe becomes of primary importance. Even with caregivers, you're dependent on them showing up on time and every day when your mom can't live by herself. I don't envy you the nuclear option, but I think it's the best and only choice at this point for your mom.

Hi, I just wanted to follow up on this question I'd asked a little while back. Well I set up in-home care but as I suspected, my mother refused to the let the caregiver in on multiple occasions. I also talked to my mother and she didn't like the idea of someone else living in her apartment (unless it were me, and that's not going to happen). So we are looking into moving her to an ALF. She's resistant to that too, but she's resistant to any changes, so I'm going to just deal with the nuclear war (as Windyridge above noted) hopefully once and for all.

From a practical standpoint, your moms care is going to become more difficult pretty quickly. She doesn't want in home care or facility care. You're facing a battle either way. I'm in the same boat with my parents.

So why not have just one nuclear war and try to get her in assited living where she will eventually transition to skilled nursing care. She will be fine, maybe mad, but you won't avoid that no matter what you do. It will be so much easier for you not juggling caregivers, errands etc.

We all agonize over what our parents want but at some point we need to look at solutions that help us as well as our our elders.

Pearl, I apologize for the wording of my suggestion; I didn't intend it to mean back off completely. I was thinking that maybe just not mentioning the issue or avoid discussing it for a few days or more would give you a chance to think the situation over without pressure to do so. It's hard to make decisions when you feel you're literally "under the gun" to make decisions. At least it's that way with me. I need to put some mental distance between the issues and me or I just don't think clearly.

Sorry for my poor choice of words.

Thanks everyone. It is interesting to see the different responses. Clearly what is right is very individual for the person and situation.

@GardenArtist Unfortunately I cannot back off, for two reasons: her memory is clearly declining so some changes must be made before we are forced to in crisis. Secondly, as I have guardianship (and went through an ordeal to be appointed) if I "back off" and do nothing, now if anything happens to her it's MY responsibility and I could get removed as guardian. The reason I was appointed is that she is deemed unsafe living alone in her apartment.

I don't think a blanket answer can be given. It all depends on who is doing the care giving, if the b person gets out, willingness of both caregiver and PWD. For us, keeping mom at home with us is best. I know Mom would not get as much attention, and care as she gets from us, nor would she be treated with as much love and respect. But I am blessed with a helpful family.

Pearl, your questions really can be answered in so many ways - for some people, facility care might be better; others would go stir crazy. I fall into the latter category. I could not stand to be confined and lose so much free will.

Friends my parent's age found people to help them at home; those with families had that support, but many of these friends are of Lithuanian or Polish descent, and have very tight bonds with their families, including those who are still living in Europe. I think there's a different approach to caregiving, depending on nationality. Just my thoughts.

The issue of "independence" when caregivers are present for several hours or 24/7 could I think be interpreted in 2 opposite ways. Some PRIVACY is sacrificed, but I'm not convinced that independence is compromised. In fact, at least in our situation, home care enables independence. I don't equate loss of privacy with loss of independence.

I've read that some families create a little private space for paid caregivers to just "chill out" or take a break while on duty. I think that's a great idea and something I'm going to create. Those folks doing that kind of work lose their privacy as well; it's not as if they're in an office where they have they own work station and desk and can tailor it to their own preference.

I think you really need to follow your own instincts as to what's best for your mother, with level of dementia, memory loss, or confusion being a guiding factor.

What I've found troubling about facilities is the number of abuses and lapses that I've read about, especially here. And I've witnessed some and had to intervene aggressively for my family. Those were NOT experiences I would ever want to repeat.

And that's one of the reasons I'm not inclined to be enthusiastic about facilities. No one is ever going to get 24/7 attention there - it might be every 1/2 hour, or more, or less, but unless private duty help is hired, the staff is limited and can't provide literal babysitting services. And someone who's a fall risk can fall even in the presence of staff. There's just no foolproof method of caring for vulnerable elders.

I think the individual's emotional health is just as important, and living at home with in-home care can support that more than a facility with games and activities planned for a general population. In the numerous times my family has been in rehab, I can honestly say that the only common denominators of cheer were music, animals, family, and great and caring staff. Staff lacking those qualities made the situation infinitely worse.

I know my father would decline drastically if he were in an AL facility. I would be the one who gains, not him.

From what you wrote of your mother, she's displaying an almost contradictory blend of fierce independence (taking taxis, coming and going when she wants) yet also idling at home and not getting out much.

The other half of the equation is you and your care. The situation is clearly frustrating you (I would be too!) so you have to factor in what's good for you. Verbal abuse and resistance isn't helping you in any way.

In many ways, she's still in control, insisting on doing what she wants. Perhaps it's time to just back off while you think over how much you're able and willing to continue trying to help someone who is resisting so much, and also give her time to be alone and perhaps realize that she needs your involvement, and needs to be more respectful of you for it.

This doesn't happen easily; some parents are so stubborn they battle (sometimes perceived) guidance and control issues for years. But I think right now you need a break, and that will help you evaluate what choices to make going forward. It may also give you a chance to decide where you want to draw the line. It's hard to plan for someone who's resisting you. (I'm not saying to back off, just take some down time for yourself and sort out your own involvement - if not there may come a time when your body and health will make that decision for you.)

Staying at home with caregivers or moving to senior living? My answer for myself would be heck yes moving to senior living.

My Dad had around the clock care at his home, but it was costing him $20k per month, not counting the expense of maintaining his house, property taxes, utilities, lawn mowing, snow shoveling, etc. Dad decide on his own to go into senior living, and he loved it there. He did bring along his morning caregiver who he had for many months, and it was still cheaper than living at home. My Dad felt like he had MORE freedom at senior living :)

I was really surprised at how well my mother blossomed in a care center, and in her case it was a nursing home. She had lived in a senior apartment building and she never went downstairs when they had events, taco night, bingo, etc. She kept to herself. Then she lived with my sister a year. It was a fight every week to get her to shower. She got to the point where she often didn't even want to go out to beloved hair appointments.

I was visiting her in the nh the first week with one of my sisters when an aide came in and said, "This is your shower day, Jean. Let me pick up a clean outfit to take down there. .. Is this one OK?" Mom said yes and went off to shower without any fuss. My sister and I looked at each other. "Who is this impostor, and what have they done with our mother?"

She loved that she didn't have to struggle into boots and mittens and a jacket to go to the hair dresser. Staff told us she was one of their most active residents, going to nearly every event. She liked flirting a bit. She liked eating with other ladies. She liked that her daughters visited often, but she got along on her own. We were totally amazed. We didn't think Mom had a craft gene in her entire body, and here she was, proudly telling us she made the paper flower on her door!

We extended Mom's time in her own apartment as long as we could with in-home help. When that was no longer safe, one of my sisters took her in. That was a good transition for her. But we were very surprised at how well the nursing home routine suited her.

I think being alone with a single caregiver at home is my idea of h*ll. Others clearly disagree, but having someone in my space would feel very invasive.

I also want to add - I am not opposed to day care. My father had Alzheimer's and he attended a day care and he definitely benefited from it (as well as my mom who was taking care of him and needed the respite). But this situation is different. It is not Alzheimer's, it is very different than my father's dementia. My mom is still aware of quite a bit and prides herself on every bit of independence she can cling to. Right now she would still be able to "see through" (for want of a better term) a daycare. She likes the idea of being able to come and go as she pleases, even though she stopped driving, she still takes taxis. That's why I'm thinking an ALF would provide her a bit more independence than having an in-home caregiver sitting in her apartment all day. Personally that would drive ME nuts, but I am not my mom, and I'm trying to see different perspectives, so I do appreciate all responses.

Yes, she will probably refuse, although I will try. My mom is very uncooperative and stubborn. It is the cognitive decline/dementia. It doesn't matter what I call it; just saying the right words will not convince her. She puts up a fight with EVERYTHING- she does not want ANYTHING to change, and she's extremely upset I'm her guardian. Even before I was her guardian, I had exasperated home health nurses calling me for advice because she wouldn't let them help her even one iota with her medication management. She thinks she needs absolutely no help at all. Anyway more importantly I am looking for feedback on ALF vs in-home care. I'm leaning towards ALF because I cannot physically go over and drag her out of her apartment every day to get her to an adult day care which she wouldn't attend anyway. Also, if she lived with me, that would be different - but she does not. So I would have to hire someone to go over to take her to the day care. 

Refuse to go? You are her guardian and it is your job to appropriately fine the care and socialization she needs. Do not call it daycare when you look for a place. Say what you need to so she will cooperate.

My mom attended daycare, every day I would tell a therapeutic white lie to get mom in the car to go.

I should add: the person in question lives in an apartment by herself and doesn't get out much except for to buy wine and cigarettes, spends most of the day watching TV and shuffling papers around. She rarely takes part in any activities, doesn't socialize much except for her daughter (me) and a caregiver who comes 1-2 times a week for a few hours. I haven't thought about daycare but she is VERY stubborn and would probably refuse to go. BTW I am her guardian and her memory has been slipping in the last six months.

In home care is better, one one care, providing there is opportunity for socialization and activities. Have you thought about day care a few times a week? Then remaining in home.