How to move Mom with dementia from rehab to assisted living without returning her to her home?

Just as we had to make upsetting safety decisions for our toddlers, we now have to make upsetting safety decisions for our parents.

This new position feels foreign and uncomfortable and just plain sad.

We are now members of a club for which we’ve never applied. Stuck in a seemingly endless cycle of uncertainty and grief.

I’m sorry that you and your Mom are in this place. The people on this forum have helped me keep my sanity!

My mom had a similar experience; after rehab for pneumonia in 2019, her dementia had progressed to the point where regular Assisted Living would no longer accept her back (she'd lived there for 4 years previously) and would only take her in their Memory Care building across the parking lot. She had also become wheelchair bound (permanently) after that hospital stay, so that added to her increased needs that AL could no longer accommodate. Yet her LIFE was across the parking lot in regular AL, with her BFF Ann and everyone else she hung around with. How was I going to tell her she couldn't go back to her apartment? UGH.

Feeling 'guilty' is not the right word, b/c it's not OUR doing that they're in this place in life to begin with. Grief is a better word; sadness that their lives have to be disrupted to THIS degree where everything is turned upside down. Right? Anyway, I digress. My sainted DH & I moved most of her things from her apt in AL over to her new suite of rooms in the Memory Care while she was in rehab. I fixed it up almost identically to how it was in AL, albeit being a smaller area with less square footage & NO kitchen. This is what you need to do: set her place in AL up just like she has it at her current home; so it won't feel foreign or 'weird', but like a comfy nest she can sink herself right into.

So I told mom that unfortunately, the nurse from AL said she couldn't go back to her apt but had to move to a new one across the parking lot in the new and gorgeous bldg with the huge fireplace. I didn't call it Memory Care, I purposely AVOIDED that name b/c mom had Anosognosia, which is a condition that causes someone to be unaware of their mental health condition and how it affects them. So, someone who has been properly diagnosed with dementia, but has anosognosia, doesn't know or believe that they have dementia. She was happy about moving to the nice new bldg, etc. And she was fine with the whole move for a while. Until she wasn't. And kept asking me why she couldn't go back to her old apartment, over and over again, and so I'd have to tell her, over and over again, that the doctor ordered her to now live in this new bldg and not the old one.

When dementia is in the house, logic has left the scene, as you know. So whatever you tell mom, you'll have to keep repeating ad nauseum anyway. I was always The Bad Guy in my mother's mind, but someone has to have that title, why not us daughters? We are there FOR them at every turn, so we're their sounding boards and scratching posts quite often. We HAVE to be The Bad Guy b/c someone has to belly up to the bar and do the Right Thing for them. There's no other choice, so you & I get to do the dirty work.

I suggest you read this 33 page booklet which has the best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580

Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.

I wish you and mom the best of luck, whether she moves into AL or Memory Care AL. Just be sure the intake nurse is aware of her REAL situation and your mother isn't able to Showtime her way thru the evaluation and wind up in AL when she belongs in MC.

Your profile says you are not local to her put wish to transition her to a facility near you. Is this correct?

Also, are you her PoA? If not, then you may not have a say in where she goes after rehab. If she truly has "advanced" dementia she is probably no longer able (or even willing) to assign a PoA. Guardianship would be the only other option, or allowing the county to become her guardian. Then you don't have much say in where she goes.

More info about your situation would be helpful to answer your question. Your Mom may also require a medical transport, which can be very expensive.

If she has dementia you do not need to get "buy in" from her to make the transition. If she can't safely be on her own, there's not many other options other than hiring in-home caregivers for her. Then you'd need to be managing that on a daily basis.

RM11446, quickly tour the Assisted Living facilities in your area to see what is available and if your Mom can budget the cost. You mention in your profile that Mom has Alzheimer's/Dementia, chances are she would need Memory Care.

Just tell Mom that Assisted Living/Memory Care is part of the Rehab. Some AL/MC have the rooms furnished, others you need to bring the patient's own furnishings. It is best to try to set up the bedroom similar to how your Mom has her bedroom set up at home. Bring along her bedspread, and pictures she has on her walls.

Now if Mom cannot budget for Assisted Living/Memory Care, then she would need to apply to Medicaid [Medicaid is different from Medicare] and that could take awhile. Medicaid does not pay for Assisted Living/Memory Care in most States, thus Mom may need to reside in a Nursing Home.

My own Mom went from the hospital to rehab to a Nursing Home as she was at a point where she needed a village to take care of her.

No need to feel guilty that you are doing what is best for her.

Thank you Geaton777. Yes I arranged for POA paperwork a few months ago, thank goodness, both financial and medical. She is 100 miles away and yes I wish to move her closer to me, I have been driving alot back and forth and see no reason to continue to do so, I will sell her home to assist with financing her new digs. Yes she has dementia and I know she does not have to agree, in fact we had this conversation the other day and it went so well but the next day I am the devil and she hates me so the journey will be a rough one. My heart is getting in the way of this but strength is needed to do the right thing.

You know what needs to be done. You know she will express her unhappiness. Do what you know is in her best interest. As you said dementia will have her changing her thoughts moment to moment, don’t let her misguided thinking sway your clear thinking.

It's pretty normal for people to go from hospital to rehab to somewhere else without ever going home. It's the easiest and therefore best way for the transition to happen. If you have to get them to agree to get in the car, etc. it can be very difficult. Since the doctors have said no to her living alone, you have that to use as your reason if/when she complains about it.

Are you planning on moving her near you or near her rehab?

My mother has no concept of time so when it is time for her to go for more care, I will tell her it is for two weeks. For example, she has been living with me since October and thinks it “almost a week”. I will arrange for physical therapy and tell her it is “rehab” which she does not object to.

I tell my mom whatever keeps her happy and adjusted and so far it is working well. A few days after she came to “visit me for a while”, she began to ask if I thought it was time for her to give up her home and I was completely honest with her. Next day, she’d forgotten the conversation but the thought is there and pops up from time to time. I’ve told her that the time will come when she needs more care but we aren’t there just yet.

You know your mom better than anyone else so you do what works for you. If you can figure out her mood first, only discuss this on days when it’s good. M

i wish you all the best in dealing with this.

I hate saying this but it’s true. Others are giving you good advice, my comment is about when she does live in assisted-living. She’s going to want some of her precious memories and valuables to come with her. Pictures are fine but jewelry and anything pretty and cute will get stolen. It’s happened every place where I put loved ones, even with ugly clothes. Have a safe put in a room and you know the combination do not share it with the staff. Or bring it for her to wear/look at whenever you visit. Allow her to wear it when you’re there and then take it back. If you can’t, leave it in the safe. I know that sounds horrible, it’s a conundrum that I don’t know how to fix, but….heads up.

If she's not fully aware, just tell her you're moving her to another rehab because dr thinks she needs a little more time.

Keep in mind she may need more care now than an AL facility can provide. They may recommend NH now. If she's in a rehab that also has NH beds, start with them. Possible they will just move her to NH area and free up the rehab bed. Then she won't have to actually 'move' to another facility.