Mom had a full neurological assessment done almost 2 years ago and based on the results of the tests, the doctor said "shortly we would need to arrange 24/7 care either at her house or in Assisted Living". When it became obvious that she was at that point, we spent the last six months trying different 24/7 options for her at home since she did not want to leave there. Not only was that extremely expensive, there were still many times when someone called off or medical decisions needed to be made. We finally moved Mom into a large AL apartment last week (so it's been 6 days) and although she says everyone is very pleasant and the place is nice, she wants to go home because there's nothing wrong with her. Twice now, when I arrived, she has had all her things packed in garbage bags by the door. She refuses to sleep in the bed and spends the night on the couch. She also won't participate in any activities even though there are many things she would enjoy if she went. It is heartbreaking to have her cry and endlessly try to explain why it isn't safe for her to be at home and this is the best option.

I figure there is a transition period, especially with people who are convinced they are OK living on their own. So I'm wondering what others have experienced and if their LO eventually acclimated and was happy. Do you visit often or not? I've heard arguments on both sides. I definitely don't want her to feel abandoned but if I go too often, does that disrupt a routine she might finally establish?

And, finally, the angst around this is awful! I know I shouldn't feel guilty as we've tried everything we could to keep her home and it just wasn't working out. But, knowing something intellectually doesn't necessarily translate to accepting it emotionally.

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It took my LO 11 months, and she still will ask when she can go ”home” but she is much more peaceful and comfortable than when she entered.
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I'm back - three months later - with an update! A couple of weeks after I posted this question, all hell broke loose. Mom fell at AL and broke her arm and had numerous other injuries. She was hospitalized for a week, went to rehab for six weeks (another hospitalization while there for illness) and I was told by the AL that she wasn't "appropriate" for their facility anymore. She had only been there 3 weeks.

OK, fine - so we looked for a memory care facility that could better accommodate her after she left rehab. We did and she's been there for two weeks now. She LOVES IT! Wow - I'm almost speechless. She's like a different person. She's made friends, feels like she fits in, is happy and her health seems to have improved as well. She did have some med changes that were suggested at the rehab facility which I also think helped. But mostly, she is in a place where she feels she can be herself and people won't think she's "different". While Mom doesn't remember what she had for breakfast, she will always remember how she feels.

Thank you for your kind responses to my question. This has been a lifeline for me since 2012 - for good reason!
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97yroldmom Apr 2019
Such good news!! So glad mom has found her home.
Sometimes as bad as we hate to hear that a change is necessary, it turns out to be all for the best. Thanks for letting us know.
My Dad, 92, has been in Assisted Living for 7 years. He did not have much dementia when he moved in. It has slowly developed, but he still functions well. We had him moved in because he could no longer walk. Although he has acknowledged the entire time that that is where he needs to be, it took him about 5 years to stop calling it a prison, saying how much he hated it, and that he would prefer to live with me. It is hard when your loved one is miserable. There are still issues, but, when he is not having those issues, he will say he likes it there now (although, just today he called it a prison!) Some say it is best not to visit often to allow them to adjust, but we have always visited nearly daily. Encourage the AL staff to do their best to include her in activities and, if nothing else, to stop into her room to talk to her. It will never be ideal. They miss the person they were, but we can't go back. It seems most never totally adjust, but it will get easier and just keep remembering that it is what is best for her and you.
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I had to move my mom (early stage 5 Alzheimer's) from the apartment she had for 50 years to a partially-assisted senior facility 500 miles away so she could be closer to me. She lasted a year and a half there before she got too bad to be alone. I tricked her into Memory Care, saying we were going to the doctor. Had I told her the truth, she wouldn't have left her apartment. She was wild for about a month. She physically attacked me when I visited. Then we changed some meds and started a new one and she calmed down.
Unfortunately, they raised their cost 50% and we could no longer afford it. She's been in this place 15 months and we have to move her again, as we are retiring and moving down south. Life happens and we all have to adapt.

I can sympathize, as we always wondered if each place was "right" but we've done our homework, so it had to be. It's so heartbreaking to see our loved ones unhappy (kind of like your child's first day of school), but they do adjust and we can breathe a sigh of relief. You'll have to remind yourself of this (because she HAS to be there) every time you visit her. This will get easier.

* Pray a lot.
*See if the activities coordinator can get her involved in some group.
*If you can, get her involved in decorating her room.
*Bring a favorite treat every time you visit. (My mom lives chocolate chip cookies.)
*Arrange for different family members to visit on different days, so you won't shoulder the brunt of the visits. (In my case, I'm it-the only kid.)
*Bring some favorite pastimes-crocheting/knitting, adult coloring books, books/magazines, puzzles, crosswords/wordfinders, etc., so she has something to do during the day.
*See if one of the staff can take her "under their wing" during this transition period.

It WILL all work out-you'll just have to "ride the waves" until then.
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In my experience detaching and not visiting so much worked better for my folks. When I put them in AL, and I PUT them, it wasn’t voluntary, Dad’s dementia was pretty advanced and he was fairly easy to divert. He spent about a month looking for his car and finally settled down.

with mom....Holy hell. She was with it enough to realize what was going on but couldn’t understand why it was not safe to be on their own in a falling down house.

i pulled back, brief visits, but would watch them at meal times from the lobby. They had to figure this out and adjust.

the funny thing with my mom, and I understand this is pretty common, around me nothing but hissy fits, tears, threats to sue me.......But when I’d spy on her at dinner, well she was just the belle of the ball joking with the ladies at her table.

Mom never really did fully adjust, always thought she should be home and was still mad at me when she died a few months ago. But home to her was 20 years ago when she was baking cakes for grandkids birthdays.

Intellectually....No problem, it had to be this way.

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I think you said it ALL with this statement: But, knowing something intellectually doesn't necessarily translate to accepting it emotionally. Elder care, in every way, shape and form, is incredibly's draining, it's heartbreaking, it's stressful, it's nerve-wracking.........we're constantly second guessing ourselves with every SINGLE decision we make. At every turn, we feel like we're doing the 'wrong' thing, regardless that it's definitely the RIGHT thing. We beat ourselves up mercilessly; we lose sleep, we fret, we can become SO anxious that we need to be medicated ourselves. The angst defies description. People not going through it just don't get it. I went through all of this with my father who passed in 2015, and am now going through it with my mother who's 92. Dad went quickly and peacefully, all things considered, Mother will hang on until the bitter end, kicking & screaming the entire time. I feel worn out and emotionally drained, and only God knows how many more years of this lies ahead of me.

I feel your pain. I have no answer to your question, only empathy and sympathy for what you're feeling. I hope & pray your Mom adjusts to her new environment SOON, and that you can find some level of peace, my friend. Big hugs.
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It can take a very long time for some especially if they are there against their will

my mom has been in a memory care facility for 3 years and still wants to come home

in the first few months, she would tie her shoes to her walker and pile her clothes on it and sit in the lobby waiting for me - I found notes in her room saying help I don't know where you are - it was very stressful - she also eloped and put up a fight when staff tried to bring her back inside

I generally visited at night until she fell asleep and I had private caregivers with her part of the day - I had a special cross body purse for her and kept lifesavers, a readers digest and fake money in it to give her security - unlike AL, memory care doesn't allow residents access to phones and I've seen many new residents in a state of panic over not being able to call their loved ones

I think most experts will say that it is better to place someone in a facility during the earlier stages of dementia but I don't think it is an easy transition at any stage -

I also believe it is important to visit as often as you can as family involvement makes a difference in the level of care your loved one receives - some families are there daily and many have private caregivers which becomes very expensive

let us know how your mom continues to do
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AvaC42, it can take some time to get adjusted especially if one wakes up in the middle of the night and don't know where they are. Bet some of us had done that ourselves back when we took vacation :)

What I did with my Dad, I tried to set up his bedroom in the same floorplan layout that he had at home. I realize sometimes this isn't easy to do because the of the size of the room, window and door locations, etc. Thankfully I was able to get the bed and Dad's highboy dresser and night stand in the same layout.

One thing I should not have done was buy new bedding including bedspread. I read it is best to use what the person was use to seeing. Dad did ok with the new items, he did mention the bedspread was much warmer then what my late Mom had used on their bed [it was like the thickness of a table cloth but that is what Mom used for over 60 years].

Dad also had a separate living room so I was pretty much able to use the same layout with the sofa, recliner and TV.

I was quite lucky as it was Dad's decision to move from his house to senior living. He was just so tired of dealing with house issues. So moving was a huge relief for him.

It takes time for a person to get onto a routine. Dad wasn't a social butterfly as he rather spend time in his room reading the newspaper or watching local 24-hour news. His apartment got full sun which he loved. He kept his apartment door opened, so folks walking by could say "hi".

As for visiting, I was visiting almost daily to see how Dad was doing. Then I started to every other day, then down to once a week when I was delivering supplies to him.

Once in a while I would ask Dad if he could change anything about where he was living what changes would he like. He said everything was just great, no changes. His only wish was my late Mom would have been there, but he knew she would never had downsized from their house.
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Some say don't visit for a few days but I don't agree. People with Dementia/ALZ are like children. They can no longer understand why they can't do something. And you can't reason with them. By not visiting in the early days, like a child, they are going to feel abandoned. My GFs Dad did the same thing. Packed his bag everyday.

I see no problem with visiting everyday to help her adjust. You don't have to stay long. See what activities they have during the day. Take her to them and stay with her trying to get her involved. My Mom was further along than your Mom seems to be. We stayed in the Common area during visits. Then we had other people to interact with. Moms had entertainment. My Mom loved music. The aides are not allowed to force residents. But we as children can be a little firmer. Tell her "Mom there is a little concert I really want to see, lets go. If she refuses, say for me.

We told Mom she was going somewhere where she would have her own apartment and meet new people.
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There's always an adjustment period. Two weeks isn't very long. I know the situation is different but I moved over a month ago and I'm still not feeling 100% at home in my new place and it was a positive move that I looked forward to. Getting settled takes time.

Does the AL employ a social worker? Talking to the social worker about your mom's desire to move "home" might help.

I too have seen different opinions regarding visiting in the early days of a move. Don't visit as much. Visit as much as you want. I don't know the answers to that and I suspect there are pros and cons to both actions.

Have you decorated your mom's new place? Hung pictures? Set out her favorite things? That might help.

It's still very early in the process. Give your mom some more time to adjust.
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