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The doctors and family members feel that the Alzheimer's patient can no longer stay in his house because he makes poor choices when problem solving. He does not want anyone coming into his house to stay with him and refuses to go into assisted living because he feels it is one step closer to death. No matter how many times we have tried to explain that assisted living will make life easier for him because he doesn't have to worry about the upkeep of his house, laundry, and meals each day, the person doesn't want to leave his house.


We would like him to decide which assisted living facility he would like to go but don't know if we should check-out the places without him or take him to look at them. A year ago, I took him to just see what assisted living facilities are like reassuring him that he didn't need to go to one at that time. He broke down, got sick, and cried. A year later, it's time for him to move into a facility, and I am not sure if he should accompany me. He has mild to moderate Alzheimer's.

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He will not make the decision and that is clear. I would say that breaking down and crying is a normal and appropriate response. I would ask him if he wants to go with you. If not, I would tell him you will go and make the best decision for him you are able. But gently make clear that this is how it will be now. It is, as with very young children, best not to give choices when choices are confusing and frustrating. It is best to gently say what will now happen.
Don't expect a good response. Expect an honest one. Which will be grief. There are times when grief is a fact that cannot be avoided for you all.
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Diane, unfortunately some of us have to wait until our parent develops a serious illness or had a bad fall before we were able to make that decision for senior living. The parent goes from 911, to hospital, to rehab, then into Assisted Living, Nursing Home or Long Term Care.

The above was the only way my Mom would leave her house where no strangers could set foot in "her house". Sadly she didn't even know where she was after going into long-term-care due to serious dementia brought on head trauma. She needed a village to help her :(

My Dad, on the other hand, couldn't wait to move from the house her shared with my Mom. At 94 he was tired of cleaning gutters, doing yard work, shoveling snow, and the "honey do" lists that he just couldn't do anymore but Mom would insist. After Mom passed, he was ready to sell and move. When I pulled up to the first senior living facility, which looked like a Victorian hotel, he asked "where do I sign up?". The place was so nice, even I wanted to rent an apartment :)

Now, if a parent is dealing with very limited eye-sight, I can see where moving would be difficult trying to find their way around a new place. Later on I believed that is why my Mom refused to move.

Some very elderly parents will refuse a nursing home as they remember back when they were kids or teenagers, a relative leaving home and moving into a facility. Usually the facility was the County Asylum, not a user-friendly place as all types of disengaged with reality patients were placed together. My great-great grandfather was in such a place due to brain injury caused by a farming accident. He was only in his 30's.
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If you are in a major urban centre the options are likely overwhelming, I think narrowing it down and then allowing him to choose from fewer options is a very helpful strategy. If, however, a repeat of what happened last time seems likely then it might be kinder to just choose one and then take him there to "try it out temporarily" or "for a few weeks while you are away on vacation (or the house is tented, or whatever)".
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This is a fun one - what brought me here in the first place! Depending on his stage of dementia, decision making might not be up to him. While it is nice to say hey, here are your options - door #1, 2 or 3, he may refuse. There does come a time when someone responsible has to make that decision.

Oddly, mom used to visit all the places local to where she lived (free lunches/tours.) She would also often say something about cleaning out stuff, in case she had 'to get outta here.' When I asked what she meant, she said assisted living. So, this was in her "plan." Fast forward - early signs on dementia, we proceeded in steps... Take car away when it became obvious it was an accident waiting to happen. Help when we could (groceries, doctor appts, etc.) Even one neighbor was somewhat helpful, at least for checking on her (55+ condo area.)

The next step was to explore bringing in help. She was still able to "self-care", but needed a little oversight. Locked/timed med dispenser needed to be checked as sometimes she wouldn't see/hear the alarm. We hired aides 1 hour 3x/week, bumping that up shortly after to 5x/week (didn't care what they did for the hour other than checking meds were taken) since it seemed to be going well. After a few more weeks, she refused to let them in. Great. Time to start checking out places... We settled on one that isn't far from me (her condo was 1.5 hour each way!) We had to wait for their rebuild of the old facility, then they opened in stages (IL, then AL - MC was last.) MC was delayed a bit until they had enough residents.

Meanwhile, mom was adamant that she was fine, independent and could cook (NOT!) She refused to move in with any of us (I wouldn't be able to care for her anyway.) When AL was mentioned, the response was "Paugh! I wouldn't live in one of those places!" So the old mindset of what NHs were in the past didn't apply. She KNEW what the places in her area were like. We did bring her for a visit/free meal/tour. She liked the place, but her big question was who will pay for this? Bring on the fibs... VA. Medicare. Whoever. She wasn't 100% convinced, but seemed to like it. However, on returning home she told me that it was a nice trip, but she wouldn't go the next time - she thought we were looking at houses for my brother who was with us! Elder Atty says we can't drag her there, suggested guardianship. Facility said no committals! Rock|us|hardplace. Facility said just get her here, we'll do the rest.

Just before the planned move, she injured her leg, didn't tell anyone and ended up with cellulitis. This delayed the move a few days. It also gave YB the idea to make a fake letter from 'elder services' at the hospital that treated the wound, saying she moves where we choose, or they will choose. Madder than a wet hen, but she went reluctantly. To her it was a temporary thing. Still wants out from time to time, but is now in year 3.

So, it isn't always a preconceived notion about NHs (though it can be.) If at all possible, come up with a ruse to get him there... vacation, house needs big repair, etc - something that is plausible but seems temporary. Don't call it what it is (AL/MC), pretend it is just a temporary move for whatever plan works. With dementia, date/time becomes muddled and he can be told tomorrow, next week, whatever, and have no clue when. Fibs can be a great friend/tool! Blaming the doctor for making the decision is another option - takes the onus off friends/family members. Whatever works - while sometimes nothing can be done but wait for that inevitable fall/injury/illness, sometimes that is too late!
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I want to thank you for responding to my question. It was helpful to read each of your responses and reflect upon them with regard to our situation.
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Makeadifference Jun 2019
I want to say, that I am a caregiver (private), and help a family with this decision. It does depend on the level that they are at.

In this case, we did not choose to tell their mother, and they moved her there, and then when I showed up there, we did not know what to expect. She focused on the fact that "what was her sons care there for", and it worked like a charm, and now my client is in a much better, safer assisted living facility, rather than independent living, which she was soon to get kicked out of because of some behavior that just is not accepted there.

Go with your gut. If it is a loved one, it is hard to say, but I would not have given my mother a choice, nor the lovely woman I still care for on a very limited basis.

There is just no way to know, unless we know the person. If it is at the beginning, that might be an option, but in the mid stages, they are very afraid of making any decisions let alone a decision like housing.

Remember, one of the biggest fears, Alzheimer's people have is the fear of Abandonment. I think regardless if you focus on the fact that you will be there to visit, etc. all will be fine.

With my mother at 80, it was very very difficult.
My client, it was a breeze, just because it was a good day for her.

Good Luck.
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From all that I've read and seen, it's not really likely that someone with moderate dementia would be able to make decisions over major issues. It might be asking him to do something that he just isn't capable of. It might be easier for him to be shown the place that you selected with care, with the explanation that it's the best place and you know it will be great for him and meet his needs. The more he has to wonder about, compare, sort, focus on, etc. it's just too confusing, imo. Plus, it opens the door for criticism.
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vstefans Jun 2019
It is helpful though to make sure they like the atmosphere if you can.  Made that mistake once with my mom -picked the one I'd like for myself, and she hated it so much, we had to move her!
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Before you choose or tour places be aware that if your Loved One is going into Assisted Living it will be a matter of months maybe before they have to transition to Memory Care. So choose a place that has a Memory Care section. This section should be locked so that the residents can not leave on their own. Assisted Living residents can come and go as they wish.
Once that is out of the way....
What is your loved one like? Do they like activities? Lots of people? If so look for a place that has those things. Again keep in mind that what a person likes now may be way off in 6 months.
And when you go visit have a lunch or dinner during your tour.
And when you have it narrowed down to 2 or 3 stop in unannounced sometime and just see what it is like as the residents go to breakfast or lunch. You would not be able to get into a locked unit but the rest of the facility you should be able to get into . Try parking in a back lot and try a side door, they are often unlocked.
One other thing to think about IF there is a possibility that this person may have to go on Medicaid look for a facility that will accept Medicaid. Usually once a person has been private pay for 1 to 2 years a facility will "let them" stay if they go on Medicaid. So do not start looking at Private Facilities that do not accept Medicaid
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My own experience in all sorts of situations is that it’s easier to get someone to say what’s wrong with something, than to choose what they like. I’d say see two facilities that you think will do, list for yourself and then tell him honestly the good bits of both of them (and bad if appropriate – eg distance),. Then ask him which is worse and why. You may get some genuine insight into what he does and doesn’t like, that will send you off to look at another place. Or you may realise that your own judgement is the way to go. Then it isn’t his choice, it’s yours, because this is what you have to do.
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Zdarov Jun 2019
For what it’s worth, I also think choose between 2 and not 3.
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You know, there comes a point where someone suffering from ALZ/Dementia can no longer make informed decisions about their care. Thats why they assigned a POA when they could decide who would make decisions for them.

Its nor "forcing" them. Its doing what has to be done for their safety. Its no longer what they want but what they need.

I think taking them on "tours" is a waste of time. Find a place convenient to family that meets his needs. Then move him in. Tell whatever fib you need to get him there. We told my Mom it was a new apartment.
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Thank you, thank you, and thank you al for your insightful remarks and suggestions. really appreciate them.
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My mom could not visit and I went and took pictures to show her first.
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The fewer options the better in,my experience. Good luck. I don't mean that fatalicstically. It seems just too many options complicates things.
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Decisions are usually not a good idea with dementia. When we moved my dad from IL to AL, even though he approved of the new apartment, he later would ask, who decided to move me here? At first he hated the change. They often do so be prepared for the anger which is part of grieving from confusion and giving up control. Later though he loved it there. So no, I would not give him a choice. And if he does hate it, give it a good 6-9 months...likely he will have changed his mind. Do not under any circumstances up and move him to a different place without giving it time because the adjustment phase hasn’t concluded. Plus another move can be just as unsettling.
Go into this knowing this is the right decision but expect some resistance on his part and know it’s normal. Be ready with "therapeutic fibs" to placate him. Hope all goes well.
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If home care is no longer an option, institutionalized care is a must. But once your loved on is in there, there will be an adjustment period for both the resident and family members. It is easier for children than a spouse to accept that his/her parent is now living in a facility. The emotional level is different. It is MUCH more difficult for a spouse to leave another spouse in a home. I know because I tried that and could not cope with the guilt and the worries that my husband was not looked after well. Remember that all facilities have more residents than aides, so your loved one is one of many looked after by a single aide. No one-on-one care like at home. And then staff turn over causing you loved one to learn the new faces again.

Additionally, facilities are expensive and most are private pay. No place accepts health insurance or Medicare. Those that accept Medicaid are filthy. I’d would commit suicide if I lived in a Medicaid facility.
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whaleyf Jun 2019
My mil was in a place that accepts Medicaid. It wasn't filthy, it was clean, sunny and she had great care. I was allowed to visit 24/7 so could check on her different times of the day and night so could see first hand what kind of care she was given. Please don't lump all Medicaid places in the same boat. You just have to find the right one.
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I took my parents to the places I liked the most after I’d seen at least 7 of them. I explained they were getting too forgetful and I needed them to get used to living resort style living while they could get acclimated because they were going to have to move either way. They love it but it is one day at a time as they get mad and resentful but it only lasts a day then they are happy again...
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My brother and sister-in-law found a place that was really nice for my mom. It is like she has her own little apartment. They did not tell my mother anything, except kept talking over months that she really needed to down size that she really could no longer take care of the house and my brother was unable to take care of her place and his place. My mother would say "yeah, I probably should move". A head of the move my brother and sister-in-law made a list of what was going to be moved, so they weren't trying to figure out what to move which would take way too long to move my mother. My sister-in-law took my mother to lunch and my brother and couple of friends moved my mothers things and had her room all set up, so my sister-in-law took my mother straight to the facility and not back to her home. We told little white lies when my mother would asked about her home we would tell her that this was her apartment now and tell she helped picked out the apartment and her house was sold. We would say don't your remember mom you said that the house got to be too much for you to take care of and she would just sit there and shake her head yes and say I remember. It is sad, and you feel guilty, but we knew it was best for her. I live 700 miles away, so I couldn't be there much. My brother has his own family and home so he tried to be there as much as he could, and taking care of our mom's house and her, but it was hard on him. We hired people when we could and my brother started staying the nights and weekends at our moms, which took away from his family. My mother's Alzheimer's was mid stage when we made that decision to place in a memory care center. She adjusted well and has been there 3 years now and she longer talks, unable to walk, so wheel chair bond, incontinent, she now holds a doll thinking it is her baby. Alzheimer's just sucks, it is a horrible disease!!!
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I visited all the assisted living places in my town and decided for my mom on a small place that is in a house, much like her own house, and close to my house. I took her for a visit and she refused the cake and tea they offered her and just glared at me as if I was murdering her. She wouldn't be nice to them or me during the visit. She forgot about the visit immediately. A week later I moved her in. I already had her things there, new bed with her beadspread, her dresser and favorite chair, and clothes. Funny, she hadn't noticed those things gone from her house. I retained her home care lady for four days and the two of us were there most of that time to help her get used to things. It took a couple of weeks, but she really was just fine. I still cry when I think of the day we took her, knowing she would never be back in her own lovely house again. But I had to be strong for her own safety. It's hard making decisions for someone else, but with this disease it is necessary.
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When it became obvious our mother wasn't doing well at home (in this case, an apartment into which I also moved and my sister spent much time) and my father needed more than even aides coming in could provide, we realized something had to be done. Our father was checked out in a hospital and then placed in a nursing home. We decided to bring our mother to the same one. My sister pointed out that even though the place wasn't particularly fancy, our mother wouldn't really be capable of taking advantage of what another place could offer. There are usually several vacancies there, and we were able to get her in just about as easily as checking into a hotel. Soon afterward their physician checked her and along with our description of her behavior, verified that she was incapable of handling several ADL (essential for tax deduction of nursing home costs). She had been in one in another state and went in completely willingly (after having complained that she was bored in the apartment we had, hoping we could provide care outside of one), and telling her that our father was there also helped (he had been there a couple weeks by then).

Apparently some people are eager to go, others are willing, others can be persuaded, and some refuse and, unfortunately, have to be brought in "kicking and screaming".
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When it was time for my MIL to move into an assisted care facility, at the time she did not want to go anywhere and felt we were all abandoning her, but when we decided to maybe take her one day to check it out, she was ok by it. She is a talker but shy, so when she seen things she was familiar with like a tv, card room people to talk to and entertainment she was very happy to go.
For us it was the best thing to do. Yes I think if they are still capable to do some things yet then take the parent to show them where they will be spending the rest of their life in!!
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jacobsonbob Jun 2019
However, it might not be the best idea to say anything to the effect that s/he will spend the remainder of life there! When my mother asked why she was in the nursing home, my sister would tell her it is until she gets stronger (which wasn't a total fib because if she could improve sufficiently physically and mentally, then she could leave). Eventually she quit asking--I think she came to realize she would never really be capable of leaving.
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I know this wasn't the question, but I would like to read some answers about having to relocate a spouse (not parents) in to a facility / group home. Thank you.
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That's a good idea that Grandma1954 had about a place that has a MC option. As the dementia progresses, the AL may not be equipped to handle that level of care. Then, you have to move again. That happened with my LO, and fortunately, it worked out well, but, that's not always the case. AND, it was very stressful in that transition period, because, I had to move LO to another facility (MC) in another county. I'd inquire a lot from the AL about how much hands on care they can provide. Can they handle double incontinence, two person transfer, escort to dining room for all meals and snacks, etc? Most AL's will do reminders, but, eventually, reminders are not enough and total supervision is needed.
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How bad is his Alzheimer's? He may just need a check-in daily at his house to make sure he's on track. Assisted Living is the worst thing if a person truly doesn't need it or want to go. If he's able to take care of himself, dress, bath, feed himself, etc. Then he should be able to get by with minimal assistance and stay independent as much as possible. Assisted Living is like a processing plant to decondition a person into nursing care where they can make even more money.
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jacobsonbob Jun 2019
I had an aunt who chose to enter such a place both to simplify her life and to be around other people. She was fine mentally, but her health failed and then she died soon after admission to the hospital, so she "bypassed" the nursing home phase.
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I would take them to visit so they can see the places. I didn't get a chance to take my grandmother to visit the place she is at not.

Fortunately the place my grandmother is great. She has made friends, she enjoys the activities. With summer being here the place have a patio area she get to sit
outside. She loves that because at her home she use to love sit on her porch during the day.
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Do not take the patient to the facility. They won't understand and will rebel and cause a scene. Family should check out the places and then make plans to get him there. And do it soon, without him. I know that is what the procedure is here in my assisted living facility. You must now make the decisions as I assure you, nothing will suit them and you will get nothing accomplished.
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The patient should not do it as their mind is broken.
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Life doesn't give you the lamp or the genie, or the three wishes either
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Hi Diane. I definately wouldn’t take him while you check out places. However, once you find a few places you are comfortable with, and you want to involve the patient, you can go to lunch at each place with him under the guise “to visit one of your old friends”. You’d be able to see how agitated or comfortable the future resident felt at each place and you could then decide on the place with the feedback you got on your visits. This way you have some idea of how to narrow the choice and have involved the future resident to some extent in the decision process without having to ask him which place he would want to move into, and reduce stressing him out or fighting. Once you choose a place, it will also make it easier for the future resident because he will have some inkling of the place being familiar since he had been there previously. Best to you as you enter this part of his care.
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I agree with the top answers. Give him fewer choices or no choice. Give it 3-6 months after move to really evaluate your decision, (my dad is ok now) you will probably feel that you made the right and only decision. We thought we would wait until a hospital visit, but that didn't happen soon enough.
Once we found a place however, my dad was interested in cost etc so he did come to registration with us. We prepped the registration person (or who ever you select : head nurse, activities director, executive director.. and they took charge of the meeting.
Another important note.. unless you find a facility that is ONLY MEMORY CARE, make sure you understand the differences between daily life in memory care and assisted living. They are not the same. Often, memory care is limited to one hallway so you are not misled by areas of freedom..
Sincerely
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Alzheimer's patients are unable to make sound decisions, and last year you saw his reaction, real or not. I wouldn't take him, most likely he won't remember where he was anyway. Do your research and select a place for him'
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In-home services can help a person living with Alzheimer's and their caregiver

In-home care for a person living with Alzheimer's includes a wide range of services provided in the home rather than in a hospital or care facility. It can allow an individual living with Alzheimer's or another dementia to stay in their own home and can also be of great assistance to caregivers.
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LexiPexi Jul 2019
I would love to keep my husband at home. He was diagnosed with Parkinson's in 2002 and is now in stage 4 Parkinson's, has Parkinson's related dementia, and is clinically blind. I've taken care of him for the last eight years. There will come a time, when I won't be able to do it safely any longer. In home care in our area runs $22 - $36 an hour. A facility (for his condition) - runs around $7,500 a month. There is a huge financial difference. If one knew he was only going to live a couple of years - it would be doable, but if he lives another 10 + years, it will get financially stressful.

I'm assuming other people have this issue as well.
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