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My mom has been living with us for just about 5 months. She has had some undiagnosed mental issues prior to getting dementia. We took her in wholeheartedly and did the best we could. She had a stroke in February which hit her cognitive area of the frontal lobe which in turn made her dementia worse. She is a two person assist and a fall risk but is wheel chair bound at this point. She will be going to an AL nearby. It was a tough decision to make but it’s been made. I am looking for suggestions on how to go about it. Should we tell her prior to the day? Should we tell her there? In case any of you has gone through this, what did you find worked or possibly didn’t work? Thank you!

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Keep it simple...tell her that she can go back home only when the doctor says she can safely do so. Put the ball in her corner and tell her that only she can decide to do the rehab to get there. Keep repeating
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Live near assisted living. Some residents that can take the bus. 2 of them that do, mention often how many have died there. EMT Fire go there often. When the vacancy sign is put u, usually it`s due to someone passing opening up an available apartment.
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I think this question/topic elicits such differing responses and strong emotion because each case is so different. We all want to be honest with out LO, we all want them to be a part of the decision and choosing and we all can easily forget that our LO isn't thinking, reasoning and understanding the same way they have all of our lives. Some dementia patients, like my mom, get very anxious over any change good or bad, insignificant or major, they can't control it and some get anxious over control, the most humane thing to do for them is minimize this as best as we can. These things, triggers, attitudes, needs are constantly in flux too so for instance there was a time when letting my mom know well in advance, putting everything on her calendar was the best way to minimize her anxiety, now she get's so anxious about having to come in contact with people at all if we give her time to think about it and can affect her ability to even function for days we have learned not to even tell her until the night before or morning of depending on event and time. When we simply give her enough time to shower and get dressed she doesn't have time to build up anxiety and things are fine, it's the most humane way to prep her for things. Other LO's short term memories are such that telling them too soon only means they have to go through the whole gamut of emotions multiple times. Tell her a week in advance and she is angry then sad about it and then forgets so you have to tell her all over again 5 days prior and she goes through the same series of emotions...that doesn't seem productive or kind either. So what I'm saying is what is best for my mom may not be best for yours and what worked 5 months ago when she moved to your house may not work the same way no. You know your mom best, you know how she reacts to things, you know how amenable she has been throughout her life to AL maybe the idea of moving to a good AL situation will be a comforting idea to her. You know those things best just as you know her current behaviors and place of mind best given she lives with you and the very fact that you are asking the question indicates you care and want to make this as easy and pleasant as possible (may or may not be possible as you know) so I urge you not to take on any guilt about the way you do decide to do this, the fact that you have decided to do it or her reaction should it be traumatic.

Also however and whenever you decide to tell her take a look at some of the threads about making a move easier for dementia loved ones. I am convinced that making the effort to make the new living surroundings as familiar as possible, furniture, photo's, special belongings (maybe not valuable)ahead of time so it feels familiar as soon as they walk in is a big contributor to making the transition as positive as possible. For some, in some situations the LO doesn't even know there has been a change in location not sure if that works when moving from home to a facility or if your mom is at that stage, likely not but it just seems like such a kind and gentle attempt to make this easier on everyone if the new resident isn't driving the move and looking forward to setting up a new home of course.

Good luck and remember whatever you do will be right as long as you follow your instinct and do it with love.
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azilmedia Apr 12, 2019
Thank you so much for your answer. I have a big knot in my stomach about what’s coming down the pike for us. Ideally, she would be happiest with us that’s a given. I have been so dedicated to her despite her ways. CaretKers blame it on dementia and I just agree. I just pray that she will adjust in time and won’t get thrown out due to behavior issues.
we were upfront about her told the facility everything so there are no surprises.
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I did this a little differently than others. I took my mom for a visit to the assisted living. She said no way was she was going, refused the cake and tea they made for her and pouted. Two weeks later, after packing her things on the sly, her home care giver and I took her to her new home, which I had already set up with a new bed, but her old quilt, dresser, favorite chair, photos, and some of my art on her walls. Her closet and dresser were already full of her clothes. Her home care giver or I were there for most of 4 days, so she got individual care and constant explanation about what was happening. She was fine within a week. I think it all depends on the person and how much care the assisted living is willing to give to one person upon move in. In my mom's case there was another woman moving in at the same time who was causing great disturbances, so what had been promised for my mom was not actually available. I'm glad I did it that way because I think my presence did help her.
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azilmedia Apr 12, 2019
your method is what we have thought about and that’s why we are doing it Thursday. I am taking the day off and M off the rest of the week. We thought I would just go there each day to help facilitate because she is set to a routine each morning and give the caretakers my tips as to what works and what doesn’t. We were also thinking of taking her there to have lunch and tell her tomorrow. I was thinking of bringing the framed art from my dining room and putting it in her current room because she comments on it regularly. I think I’ll ost am update in a week or so and share our journey. Thank you for your input.
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Azilmedia, there are good guidelines and helpful experiences out there; but none of them will give you exact instructions about how to handle your mother. When it comes to her, especially as you have been her primary caregiver and you have got a good structured routine set up for her, you are the expert.

Before I read your reply of a few minutes ago, I was going to say that what you tell her is perhaps best guided by what she asks and how she asks it. Is she aware that change is afoot? How much does she understand of what is happening? Did she go with you to view the AL? Has she met any of the personnel there, such as the Admissions Officer or anyone?

If she is severely impaired cognitively, so that she has virtually no ability to handle concepts like future events and planning, the advice is not to burden her with information that she can't place in context. So you don't raise the subject of the move itself; but if you think she can cope with it you might for example like to involve her in choosing items to take with her, things like that. If she *asks* about the move, it becomes different - her asking demonstrates that she does have some ability to project her thoughts to future events.

But I'm guessing, and you know what kind of information she can manage and what, if anything, she wants reassurance about. And reassurance is the key. She IS going to be fine, you are NOT going to abandon her, and you will continue to contribute significantly to her care whether hands-on or otherwise.

The advice about not visiting to give her a chance to settle is generally true, but not always applicable - it depends. If you can work effectively with the care team it might be better to join in and gradually wean her off your assistance; talk to the managers about it and see.
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azilmedia Apr 12, 2019
I think that is wise advice. Thank you!
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My Mom was pretty out of it by the time she went to an AL. So, I told her the day she went. We told her she was going to an apt of her own. There will be people there she could be friends with,
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I truly believe in honestly. I would tell her today, and again when arriving at the facility. She may ask questions in between, so just answer them honestly. When explaining, inform her how much fun she will have in activities, socializing and good food.
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TNtechie Apr 11, 2019
I am shocked at this unqualified response. How much you believe in honesty doesn't matter to most dementia victims. Telling most dementia patients they will be moving from a home to a LTC facility is like telling someone they have brain cancer; it triggers an almost unlimited fear response to the unknown future. You delay until the time span on that window of fear is reduced and very limited. You delay until being there and seeing/experiencing the facility can quickly replace the "unknown" aspect. Being "honest" with dementia victims might make YOU feel better, but with something like this it's seldom in the best interest of the dementia patient.

Honesty matters with competent seniors and if they are competent then _you_ are not moving them anywhere without their full knowledge and consent.
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My father had vascular dementia from multiple TIAs and minor strokes. Although he never completely loss function in one side of the body, he did have balance and coordination problems following one particular mini-stroke. He developed Parkinson's but doctors were not sure if that was a result of the strokes or some high blood pressure medicines he had taken. Dad had paranoid personality disorder prior to his dementia, which didn't make things any easier. Dementia brought out all the worse aspects of my father's personality. Dad's memory was fairly good (unlike many with dementia) so he knew I had been awarded guardianship and planned to place him in an MC close to his home. My estranged brother made sure Dad knew I was "taking" and selling his home and collections to pay for the MC fees.

I assured Dad I had picked this particular MC because I believed it was the best match for his needs - that he would be safe and well cared for there and that the MC was actually closer for my estranged brother to visit. I told him someone would visit every day; estranged brother would visit Mon-Sat and the rest of the family would visit on Sunday. I knew from prior hospital stays that Dad had orientation problems when waking in an unfamiliar environment. At the hospital, having a person he recognized in the room when he woke made a big difference. I had engaged 24/7 in home care while I made arrangements for the MC so when he made the move to MC, I kept his care giver schedule going overnight for a week. Having his furniture and pictures that he recognized on the MC walls also seemed to help. The actual adjustment to the MC went better than I anticipated and Dad was much better physically and emotionally just a few weeks in. Good medication management was one part of that but I also believe he felt safer being in a environment where there was always someone around.

Because fear of the unknown is such a great stressor, I would suggest you delay telling your mother about the move until a day or two beforehand. If she doesn't remember conversations, then I wouldn't recommend telling her at all prior to the actual move because you will need to have that conversation multiple times after the move. If memory is an issue and your mother still understands what she reads, I suggest writing a letter where you explain she's living in an AL in order to get all the care she needs, share details of the AL functioning she needs to know, and tell her you will be visiting at a specified time. If she doesn't read anymore, make a recording that she or the staff can play.

Although this is a difficult transition, once things settle a bit you will likely find it works well. You can go back to being a daughter again and plan little things that Mom can enjoy in AL. Although your mother may benefit from your visits just after the move, please make sure you don't try to be a care giver after she is in the AL. Learn the AL schedule and methods and focus on adjusting or helping your mother adjust to the AL way. AL cannot personalize basic functions for each resident; AL can personalize the how. For example, medication schedules are fairly fixed, but milk can be provided to take the medication instead of the standard water if you request it and that gets entered into your mother's medication chart. I found that writing a one page note to the staff with some of my Dad's likes (likes the room really hot, 85+ or favorite overnight snack is about a 1/2 cup of vanilla ice cream with a tbsp of peanut butter on the side) works a lot better than trying to talk with everyone.
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azilmedia Apr 12, 2019
Thank you for your reply. We are so torn. The AL facility suggests that we should not be in the picture after drop off for 1-2 weeks. I think that is hard on her.
ive been taken care of her for a long time but not in this capacity. We have such a morning and nighttime routine that she is used to and I am concerned that when she gets there and I am not there to help with transition she will absolutely yell and scream and possibly curse at them. I am off for 4 days during this transition to make myself available for any of her needs and then I go back to work unless there is an emergency. I know all her quirks and idiosyncrasies. What can trigger her reactions and what won’t.
Thank you for your input.
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I'm not sure if AL is the right option. Sounds like she needs a lot of care?

If you tell her first, will she know and understand what you're telling her? Or will it be new information every day? Such a hard situation.
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JoAnn29 Apr 11, 2019
Yes, I am surprised they excepted her needing 2 people to assist her. ALs don't have the same ratio of aid to resident as a NH.
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