How to help LO adjust to MC

Merla · August 14

My parent is mid stage of dementia and was placed in a high quality memory care facility (supposedly the best chain in the country per US World News and Reports). This facility has programs for all levels of dementia including higher functioning people like my mom.

She has been there for 6 months and she is just not adapting well. She is just adamant she doesn't belong there. She is on the younger side (mid 70s) and is very physically active. The staff says she is very hard to engage in activities so she just sits in her room a lot though honestly god knows what the actually truth is as she isn't an accurate reporter. The staff says she is pleasant and polite but not engaged in the community. But she is supremely unhappy about being there and is always making plans to leave. I really would like her to be more engaged in the community and activities. Some of the activities aren't a good fit for her but some seem like a good fit for anyone, ie the higher functioning people go on excursions like nature walks and out for ice cream or the library etc.

when I toured memory care facilities, the sales people told me that they are able to engage most people in some activities each day.

I'm at a bit of a loss. I live out of state. I visited her once and stayed with her in her room. The facility is as nice as it can be. The staff is friendly and pleasant. The food is pretty good. However my moms mentality is that she is not a part of this organization and wants to leave vehemently.

She wants to move by me to a condo which obviously can't happen. I'm not against her moving to another facility by me but I'm not sure if she would be better off but at least I could monitor the situation closer. Her siblings say that if she moves by me then I run the risk of her just hating me for putting her in another facility and then she will only have me and no other family around. And this is my concern.

I also have so much stuff going on in my own life and the thought of taking responsibility for her 100% is intimidating. I wouldn't hesitate if I had her siblings living nearby but it's just me and my family.

It's just hard because I have other minor to major crises in my life right now and I just want her to be ok for a bit so I can work through these other problems in my life without additional stress.

I also wonder if I need to pivot my reactions to her saying she wants to leave. Currently I tell her that I'd love to have her living closer to me but that we need to find the right place for her and that now her 90+ year old parents are so happy to have her nearby. So I kind of go with her desire to leave but the problem is that she is focusing on this as a real and immediate plan as opposed to something farther out into the future. If I can resolve some of the other major issues in my life, I wouldn't be opposed to having her come by me but I truly don't know if she would be better off.

I also find it so hard to hear from people emphasizing I should be spending as much time as possible with my mom. I get the mentality but I'm so overwhelmed with my own life and so many things make it difficult to get on a plane to see her.

I have a care plan meeting with her care team so would love to have ideas on how to keep her engaged and occupied. I did hire a caregiver to take her out twice a week which she thinks is a family friend.

otfgirl750 · August 14

this sounds so much like my experience, please know that you are not alone in this.

When we first moved Mom to memory care she felt the same way and was not getting involved in activities. What I realized over time is that she was more ok with not being involved than I was. She was ok to stay in her room and had interactions with others during her daily walks around the floor. That was enough for her. We tried so many things, we brought activities for her to do in her room and she never did them. These things may have been overwhelming, I don’t know but we started to take her lead. The activity was not why she was unhappy.

she also felt she did not belong there because she missed her friends at AL. It is so hard because I just wanted her to be happy but I knew she needed to be there to be safe.

My mom being near us has been a game changer. We moved her to our city so we can see her often but I am lucky to have a sibling here also. Can’t imagine doing this myself. Some days it is too much to visit. I feel guilty but I also know that my mental health is important.

This disease is devastating and I am sorry you are going through this with your LO.

H1235 · August 14

An antidepressant helped my mom. I think it sounds like that is what she needs. My mom wanted to go home to her house. She felt she didn’t belong. She never quit wanting to go home, but she quit bringing up he subject and eventually started participating in some of the activities (many were still beneath her). Mom also saw a counselor. I’m not sure if she was really able to remember any comping strategies. But he was someone that would listen to her and she could complain about how awful I was. As far as moving her, it sounds like a nice facility. I don’t think who is coming to visit (you vs her siblings) is going to make much difference. A move to a different state and a different facility would be a lot of change. I don’t think it would be a good idea. I think she would continue to feel she doesn’t belong. I would ask about something for her mood. It may take awhile for it to start working and to get the dose right. They usually start at a very low dose and increase it gradually. I hope you find an answer.

ARIL · August 14

I think your care plan meeting is the right next step. Ask advice of the staff. They have knowledge and experience. Talk to her doctor; it is possible that a change in medication may help.

Your mom is safe and well cared for. That is the first priority. She has family nearby. You may not be able to make her happy no matter what you do or where she is. Holding yourself to that standard will not help you or her. Her health and safety are the first priorities.

You are not able to take over her care directly right now, and it is important that you realize that. There is much in her situation that is very good. Work on getting your own needs met. They matter too!

I moved my dad near me, and here he has only my spouse and me. But we didn’t leave family in the other state. So that was right for us, although the amount of effort required of us is a lot. But every situation is different, and it is important to look hard at the actual facts, not to get caught up in other people’s fantasies about what you should do.

It sounds as though the best plan for now is to leave your mom where she is, work with staff and doctors to do what will work for her, and manage your own life—as much as possible without guilt. You are doing right by your mom.

Merla · August 15

I agree that she needs an antidepressant.

I also wonder if we made mistakes when she entered the facility. My sibling told her that he was having house renovations so she needed to stay in a hotel for a while. We kept with this lie. When she asks about leaving, I kind of go with it because I don't know what to say and I just try to push her plans out into the future. Maybe we should go with the truth. She has been told the truth but not consistently. She has never accepted she has Alzheimer's and brushed this aside. So basically we are lying to her a lot and leading her on. I just don't know what to say. However maybe it would be better to say consistently "the drs gave you this diagnosis. They say this is the very best place for you. I'm sorry, this is hard."

in the past few weeks she has become very agitated about the memory care and is becoming paranoid about it. The problem i see is that it is not just the disease causing her paranoia. The lies told to her also fuel this paranoia. Ie being dropped off at an "old folks home" under the guise of home renovations. So maybe we should just be direct with her even if there is no hope she would accept the reasoning.

The social worker says she is very hard to engage in activities. I wouldn't care so much if she were content but she says she is so bored. She categorically won't engage with activities because she doesn't see herself as a resident and goes on and on about how she has no affiliation with the memory care. So she is probably passing on activities she might have otherwise enjoyed.

I don't know. I feel like her social and emotional needs should be better met. They do have support groups for residents but maybe she does need individual counseling.

H1235 · August 16

https://alzconnected.org/discussion/comment/250611#Comment_250611

We were honest with my mom. It didn’t matter. She eventually said the doctor made a mistake when they diagnosed her. She said the doctor did know what they were talking about when they said she couldn’t live alone. Making excuse after excuse. Arguing over everything. I suspect there is no answer that is going satisfy her. My mom does not believe there is anything wrong other than some minor memory issues, normal for her age. Because of this she believes she doesn’t belong. I don’t see any way to change that. It’s the anosognosia and there is nothing that can be done. Antidepressants.

sandwichone123 · August 16

Telling your mom two different stories will not help. Choose one and be 100% consistent. She does not—cannot—understand that her thinking is impaired, so when you tell her what you perceive as "the truth" she knows right away that you are wrong and not to be trusted. Stick with your story and stop visiting so much. That will give her the opportunity to begin building relationships where she is.

Most of us don't visit our parents every day from the time we leave home. We don't need to do so when they're surrounded by a community of people they really need to build relationships with.

Merla · August 17

I know that being honest with her won't provide resolution for her but the lie we told her is wearing thin and puts other people in awkward positions. My sibling told her that he was having house renovations so she needed to go to a hotel of sort. The memory does not allow suitcases which makes sense but she is now obsessed about her suit cases and my sibling having stolen her suitcases. To her suitcases are a huge barrier to exiting the memory care. So family gets into these conversations with family where she is asking why can't she have her suitcases and won't someone bring her suitcases. And it gets hard to respond to besides saying that the memory care place doesn't allow suitcases. And then people have to make up excuses as to why she can stay with them temporarily. It seems like it would have been easier just to go with the truth and blame it on the drs. She does on some level know the truth bc she was told it but we don't repeatedly tell her it and she just put aside her diagnosis and didn't believe it. The topic of suitcases is just getting ridiculous.

I don't think family visits too often. Probably someone visits her once a week or once a every other week and its a variety of people. She has a caregiver take her out twice a week. The issue is that the staff hasn't been able to engage her in any activities really so she spends too much time in her room.

How to help LO adjust to MC

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