Has anyone had to make the decision for their parent to move to assisted living?

leslieO423 · April 26

Hi. I'm new here. My mom has been living w/dementia and officially diagnosed with Alzheimer's a few months ago. She lives alone in her own home but my sister who lives nearby has supposed to have been helping her out with routine things. (Sister lives 10 minutes away, is not working, is health care proxy and primary POA.)

I started staying with my mom part time every other week (I live in another state and have a full time job) and over the winter, have seen her capabilities decline and her illness escalate. She is more and more scared of being in the house alone and I've been talking to her about assisted living. (We've been trying to get her there for 2+ years - she has always been resistant.) She's equally anxious about that because she's afraid of the unknown, and knows that this will be the last place she moves to. But she's in tears every time I go there and she says she's ready to move.

So we (the family but basically me) have made the decision that mom has to go to assisted living and we (again, me) have picked out the place, the apartment, and are moving ahead with moving mom in the next few weeks.

And I feel like a villain.

Every time I think about her actually moving, I get sick. Has anyone else ever had to make the decision FOR your parents? How did it go? And how did you manage your own feelings based on knowing what you're doing IS the right thing to do for them?

Thanks for listening and any advice you can share.

Quilting brings calm · April 26

many of us have. You aren’t doing this to her, you are doing this FOR her. For her safety. Read through a few pages of posts both here and in the ‘I’m a caregiver forum’. - you will see that placing your loved one is a popular topic.

H1235 · April 26

Welcome. You’re not alone. The person who makes the decision is often the one made out to be the villain. In my experience it’s easier for others to do nothing and blame everything on the person doing all the work. My mom did not want to go to Al. It was a good move for her. She was wearing her pajamas all day, not eating well and had no one to talk to. She still doesn’t think she belongs there, but enjoys being around other people. You are doing the right thing! It can be dangerous for a pwd to live alone. Wandering, not taking medication properly, not eating well, being alone all day, falls, fire… It sounds like you are getting stuck with a lot of the work even though you aren’t the DPOA. My mom insisted on packing herself for the move (she was living with my brother at the time). It was a mess. She packed clothes that didn’t fit, king size sheets, cup cake papers. But we got her there and that was what was important. I hope all goes well.

leslieO423 · April 26

https://alzconnected.org/discussion/comment/241698#Comment_241698

Thank you. I know all of this is true. I know it is time and I know she will be so much happier after the move. I think I just needed the reassurance that others have made these decisions for their parents rather than with their parents as I would have liked and survived.

(FTR, I have assumed the DPOA because I was listed as the alternate and my sister has abdicated her role to me. I have the certified copy in my possession, so that's one less worry.)

Thank you again.

leslieO423 · April 26

https://alzconnected.org/discussion/comment/241696#Comment_241696

Thanks. I've been scrolling through posts and did find one that matched my situation. I have the comments saved to remind me others have done this too. Thank you.

ARIL · April 26

I will echo others: a lot of us have done this. Yes, it is hard. Yes, I didn’t sleep the night before the move. And yes, it was the right decision. Things are WAY better now, even though the disease is progressing and it’s still really, really hard. But moving my parent was absolutely the best choice.

Hang in there. I wish you well.

Melba Davis · April 27

I was recently diagnosed, early stage. I plan on getting a notarized statement instructing my family to move me to Assisted Living when I need full-time care. I don’t know if this helps you as caregivers, but maybe your loved one feels the same and just can’t voice it.

ARIL · April 27

https://alzconnected.org/discussion/comment/241718#Comment_241718

Thank you. It is kind of you to say this, and very forward-thinking of you to care for your own family in this way, putting a plan in place for some future time.

jen ht · April 27

Hi LeslieO

I could not involve my dad in the decisions unfortunately. He was falling for scammers. Even being right there with him in his home I couldn't get it stopped sadly. So I had to make tough decisions extremely quickly before more funds were wiped out.

It was (and often still is) very difficult, but he is safe. I redirect my thoughts back to that over and over as much I can. He worked hard to have some funds available for his care. Scammers were getting way too much of what he needs and will need for his care.

I wish you well.

jen ht

psg712 · April 27

Yes, I had to make that decision for my mom. She was not happy about it. Neither were some of her friends and family who were not able to see how she had been struggling and how unsafe she was at home.

Within about a month of her admission to AL, I realized how big a relief it was for her not to have to take care of her home, finances, medication, transportation. Although it took a lot of logistics to get her moved, it was worth it. When people asked if I felt bad that I moved her into a facility, I said no, I feel bad that I didn't do it sooner.

leslieO423 · April 27

https://alzconnected.org/discussion/comment/241729#Comment_241729

Thank you for this. And I'm sorry you had to make that decision without support. While I'm not getting much support with the actual doing of things, at least the family (with the exception of mom sometimes) is supportive of the decision. That helps. A bit. But like you, I know how unsafe and unhappy she is at home.

One of the things I'm struggling with right now is how to get literally/physically get mom out of the house. I've got most everything else worked out but if she doesn't want to get in the car on moving day, I have no idea what I'm going to do. That's what's keeping me up nights right now.

Thank you for sharing your situation. It helps.

leslieO423 · April 27

https://alzconnected.org/discussion/comment/241726#Comment_241726

Thank you. That part about "not involving" them in the decision breaks my heart. But I couldn't. We'd been trying to get her into AL for a few years and she wasn't having it. She'd go see places and then got really combative afterwards. But I know she will be safer and happier once she gets there. I'll try to hold on to that.

leslieO423 · April 27

https://alzconnected.org/discussion/comment/241718#Comment_241718

Thank you for sharing this. It is kind of you to think of your family's future feelings. As one who wishes we'd understood things better when we first noticed mom's decline, you have done them a great kindness.

psg712 · April 29

https://alzconnected.org/discussion/comment/241741#Comment_241741

I had that same fear, that after arranging everything for her move, my mom would simply sit down and refuse to get into my car. I was so grateful that when I said very casually, "ok, we are ready to go" she simply followed me outside. I got her into the car, locked up her house and we drove away. It helped that her beloved cat was also in the car. In hindsight, I wonder if she was just bewildered and not quite grasping the finality of it ... although she had spent some time that week calling distant family and friends to let them know she was being compelled to move against her will!

The actual move is tough, but I hope that once your mom is settled in her new place, there will be peace for her and for you. You are doing your best to see that she is safe.

leslieO423 · April 29

https://alzconnected.org/discussion/comment/241876#Comment_241876

Thank you for this. I'm at mom's tonight and walked into a firestorm of her fighting the idea of moving. Of course this happened to be the same day I got the bill and contract from the AL facility which is no small $$ commitment. Thank you for the encouragement.

jjdoc1 · May 8

My mom is 91 and is in stage 5ish of the disease. She fell, didn't break anything but had deep muscular hematomas in her low back, hip and arm, she was in so much pain she couldn't walk. She went into rehab and it was not set up for memory care pts. The Lord led me to a residential care home and at the time there was only one other lady living there but has the capacity for up to five residents. She has been there since March 23 with home health PT working with her. She is safe and has graduated from a wheelchair to a walker. I can relate to the feeling of having to place your mom somewhere, as I had always promised her I would take care of her for as long as I could. The decision was gut wrenching for me but was made a bit easier by the fact that she had to be in a wheelchair and I still work fulltime and it just isn't safe for her to be alone anymore. These residential care homes are a nice alternative to assisted living and much less expensive. I don't feel my mom is ready for hospice yet and for now she will live there during the week and I'll bring her home on the weekends. It's so hard to hear her beg and plead to come home and complain that all she does is sit and watch TV all day but the reality is that that is all she did here but there was no one else here to encourage her to eat and make sure she takes her meds, eyedrops, etc and most of all keep her safe. I cried and stressed myself out so bad my blood pressure shot up. It was so hard but we are doing the best for our loved ones. I've been watching YouTube videos on how to handle a loved one with Dementia/Alz. Mom really is in another world or decade of her earlier life and confused a lot. Today she thought she was in nursing school and didn't know why because she knows no one is going to hire a 91 year old. There is a lady on YouTube name Teepa Snow, you should watch her, she is a wellspring of knowledge of how to handle your loved ones. I hope this helps. I'm new to this forum but I'm looking forward to having others to share experiences with as I have felt alone with this situation. I have a sister in Florida and a brother in North Carolina and here I am with mom in Texas. God bless you and you will be in my prayers.

TrumpetSwan · May 8

Yes. If you are still following this post, I just wanted to also say you are not alone. As others here stated, many have had to make that decision for a parent. I believe it is one of the most difficult things we will do in our life. I really think the impact of it and the resulting dynamics cannot easily be comprehended especially by someone who never had to do it.

I had both parents to decide for. Both were showing signs of dementia, but neither one ever wanted an official diagnosis. Both refused to talk about ALF. Neither one wanted home care (I tried). While denying their status or perhaps being unable to see how bad they were, their conditions declined, and both became incontinent and unable to clean up after themselves. So, that was the tipping point.

The logistical aspects are easy to reference. You can rationalize your decision by saying they are better off with the support of a community, have consistent medications given, have consistent meals and are safe. All of that is likely true. However, what I think is actually the toughest part is the emotional aspects - which NO LOGIC can ever resolve.

I think you just know that you acted out of love and allow that to give you peace. It gets to a point sometimes where their situation is bigger than just you. You know you alone cannot fix it. You also know in the days ahead, you will continue to act and support them from a loving place. Once they are in the ALF, the caregiving and oversight does not end it just changes.

leslieO423 · May 9

https://alzconnected.org/discussion/comment/242606#Comment_242606

Thank you. Two weeks ago I had finally made the decision for her and was struggling emotionally with it when I made this post. Since then I've been working with lawyers, doctors, realtors, movers, and AL administrators to make this happen while still trying to take care of my mom. There was quite a blow up when some family members started doing work on her house (sending mom into a frenzy of suspicion and refusing to even consider moving) but I have managed to smooth that over again.

She's moving on Monday - whether or not she remembers that is TBD. But you're right - no one prepares you for this, and no one who hasn't gone through it has any idea of the emotional labor and cost. I'm sorry you're in this particular club but I'm glad this community of like souls exists.

I don't know if it's better or worse that my mom isn't as far along as some folks have shared. But that's why I want to move her now. I feel like she has a chance at being happy in AL. The life she's living right now is no way to live and my heart breaks every time I see how really scared and lonely she is. I am hopeful at least that will change next week. Thank you again.

terei · May 9

Commonly, caregivers do not telll the PWD they are ‘moving’. I made that mistake once..not ever again. The day of the move, I told mom we were going to lunch, look her to the MC facility. We had lunch there + the staff distracted her and I left after checking out her room (on my own) The staff her to an activity + said her doctor was having her stay there until she was ‘better’. They dan advise whether you should visit the next day or days or not. Sometimes its better if you dont go back for a week or even longer to see if she settles in.

Has anyone had to make the decision for their parent to move to assisted living?

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