Ready for Long Term Care?

ShannonA

Hi Everyone,

New here! How do you know when it’s time to move a parent to permanent care? Mom is 76, diagnosed w/Alzheimer’s two years ago. She no longer does personal hygiene, wanders all over the house, nasty behavior, difficulty communicating, incontinence, accusatory, argumentative, difficulty eating, swallowing, delusional, can’t dress herself (or refuses to), etc. it’s interrupting my work-from-home job, and I am stressed beyond belief. Doc says it’s time

Do you try to tell the individual they’re moving? Do you surprise them? Do they ever forgive you for doing what has to be done?

I appreciate any guidance or thoughts! Thank you!

Shannon

M1

Hi Shannon, sounds like it's more than time. There's no hard and fast rules on this, but if its unmanageable for you then it is certainly time.

Typically no, you don't discuss it, she will not comprehend it and will be resistant. You just go and let the staff take over when you get there. You may use anything that might work to rationalize it-doctor wants you here to get stronger, there's a gas leak at the house, you have to go on a long trip.

Im sure others will chime in. It is never easy.

Anonymousjpl123

It’s very hard. I had to do it twice in the last year, first when my mom was not capable of living alone but I wasn’t sure it was time for memory care so moved her to AL; and just yesterday when I moved her to MC.

The first time I was able to be honest and say she couldn’t live on her own, it was time to be in a community, etc.

This move was more like what M1 described: I moved her apt. While she was in the hospital from the AL side to MC. I basically recreated her studio apt overnight. She was paranoid and wanted to get out of where she was. I told her she was going to a different place where there was more care for a potential upcoming medical procedure (a partial truth). Right now her mental state is too far gone to understand so it hasn’t mattered as much.

Depending on your moms mental capacity (you know her best), find an explanation or just prepare her new space and bring her there. She will forgive you, but she will never be the same.

My mom has had no animosity toward me yet, but it may come. Last week she literally begged me to let her live with me. It’s horrible, but she needs more care than I can give. It sounds like your mom does too.

I’m sorry you have to go through this. It is really hard, but I have zero regrets placing my mom in appropriate care, even though I do sometimes still have (irrational) guilt.

JoyfulJulie

I just moved both of my parents from FL to wa when dad called crying that he could not do it anymore.i literally packed up stuff for mom including pictures and important items and brought them both to my home. They both moved into The same room in MC. Although dad is independent. That worked for 5 days because dad refused care from all staff for mom. He was asked to leave and lived in my house for a week and a half. He now has his own apartment in AL. One floor up. We told mom that dad had covid. Mom would call me with suicidal ideation until the staff took away her phone.

I feel so horrible for her. She started on zoloft a few days ago and will start on xanax today. She took all the pictures down in her room and took all the clothing out like she is packing.

We originally told her that both of them were there for rehab. She is doing pt and ot. This is so heartbreaking

M1

Hi Julie. I understand so much where you are--my partner also had a very, very difficult transition to MC. A bit different when it's your parents instead of your partner--but I get it. I think taking away her phone was the right move, as are the Zoloft and the Xanax. The Xanax may have some immediate calming effect--though there are occasional paradoxical reactions, so be watchful---while the Zoloft can take a week or two at least to kick in, and dose may need to be adjusted (can range from 25 mg at the low end to 200 mg/day at the high end).

Be prepared for it to take longer than you want. We're 18 months in and on our second facility--second is much better than the first; and after four months at the new facility there are glimmers of hope (see my post on the spouses' forum today). That said, my partner still packs up her room every few days--including taking the pictures down, etc.--this may or may not go away, try to minimize what is available in terms of storage containers so that she doesn't have anything to put it into. My partner can't even have a wastebasket or a laundry basket in her room or she'll use it to pack up.

Be prepared that it may be a while before you can visit, much less visit successfully. I couldn't visit for almost the full year at the other facility, and when I did it had to be with someone else present. Right now you and your dad may both need to stay away so that she can develop relationships with the staff who are there; I would let them take the lead on this and let them tell you when they think you should come. The excuses about rehab have worked, for us, at the new facility. My partner has no sense of time any more, so she doesn't catch on.

My experience has been at the extreme end. There are others who adjust more easily. Here's hoping she'll come around. Welcome to the forum, you've come to a good place.

bjohnsen3869

Shannon,

I’ve just recently gone through what you are going through right now. I’ve learned a couple things from this forum and trial and error. Number 1, guilt prompting decisions aren’t good for our LO. I had a saying recently that makes total sense with this disease……..compassionate deception………….I grew up thinking honesty is the best policy……….not with an Alzheimer’s patient. I’ve actually discovered it hurts my dad more than it helps. My dad had all the signs your mom is having and have found that he is much calmer and less anxious in the facility. He has been there 3 weeks. It was extremely difficult for me to put him in though. I 2nd guessed myself 100 times before move in day. I cried for days with the guilt. They day before we moved him in he was crying and begging me to stay just live here with me. In hindsight, I wish I wouldn’t have talked about moving him in the facility at all and just took him up the day off. I often make the mistake that his brain functions normally with ration and reason. It does not.

I know it’s hard to let go of the guilt but it is counterproductive. This move is absolutely what is best for your mom. If she seems upset with you, it isn’t you she is really upset with, it’s the disease. You are doing the right thing.

ShannonA

https://alzconnected.org/discussion/comment/180651#Comment_180651

bjohnsen - THANK YOU so much for your words. This is so very difficult. I am an only child, and my uncle (her brother) and nieces/nephews don't understand what I go through. They come for a 45min visit where she is somewhat neutral and quiet (thinking it is representative of her behavior when they leave) - not realizing what happens. Her aggression, sadness, mood swings, sporadic eating, hiding garbage, incontinence, refusal to bath, allow me to help with hygiene, etc. I'm sure you know what I mean. I feel like she will 'hate me forever' for placing her in care, but I also feel that professionals can give her the care she needs. Thanks again for your words and compassion!

bjohnsen3869

I hope it is going ok with you. I had to recently move my dad to the MC portion of the facility because he was trying to leave. I wish I would have moved him to MC in the first place. The 2 moves in less than 60 days is extremely taxing. Please consider moving directly to MC as opposed to AL, even if you feel like she’s not there yet. That is a mistake that I made. Learning stuff while navigating sucks.