Move Mom In or Stay in AL - Advice Needed

LB3

My mom is transitioning from mild to moderate stage and I could really use some advice. 

Some Background: 

A year and a half ago, I moved my mother from her home 2 hours away into an AL to be closer to me. She had been living alone and I noticed that Covid isolation was accelerating her dementia. My husband and I then moved into a house closer to her AL location. I had to take her car away shortly after (which she still hasn't forgiven me for) and she complained the AL didn't have shops within walking distance - which was true - so out of guilt I agreed to move her about 6 months ago to a new AL that was still close to my location. At first she was happy she got her way, but for the last couple months she keeps insisting that she wants to move back home to the house she was in before. She says she is miserable and lonely in the AL even though a companion gets her out 3x a week and the AL obviously has field trips and people interacting with her. I think she misses me, I'm an only child and have been her entire world for awhile. She doesn't have many others in her life.

I know that new environments are difficult for Alz and I really hated moving her twice in the last 2 years. To make things more complicated, my husband and I moved again a few months ago feeling we needed a larger house with an in-law suite to provide easier access for our parents since my father-in-law had a stroke a year ago which compromised his mobility and he sometimes comes to visit (the old house had a lot of stairs).

The Problem:

Moving my mother back into her her old home and getting around the clock care absolutely won't happen (she'd be too far away, her doctors are here, we can't afford 24/7 care, etc). So she will either need to stay in the AL she's in (they have a transitional level of care before memory care so it's a perfect place in that regard) or, now, I'm wondering if there's any way she can come live with us. Her neuropsychologist and her best friend (whose mother also had Alz) have been strongly opposed saying it would destroy our marriage and our lives. 

I would never move her into a room in our house for that reason. I can hardly stand to be around the repetition and her demands that much as-is. That said, the bottom portion of the house is self-contained with a separate entrance and we have a big garden to occupy her. There is also the possibility of building a small studio over our garage which is actually a separate dwelling far away from the main house. Getting a house to accommodate the seniors in our lives has been very expensive and so is my mother's AL. I'm watching our collective savings go faster than I expected - moving her in with us seems like the smartest move, financially speaking.

I guess my question finally is this: has anyone here ever successfully had their LO live with them in a way that didn't monopolize every second of their lives? If they live in a separate unit with a caregiver during the day to occupy them, is it possible? Or is this a pipe dream / disaster waiting to happen and I'm just kidding myself? Many thanks to anyone who reads this!

Suzzin

My advice would be to leave her where she is. Do you honestly think you'd be able to move her into your first floor or the garage and not be expected to spend loads of time with her every day? If you move her somewhere without institutional support, you'll have the expense of hiring near-constant caregivers in addition to providing all meals, entertainment, driving, shopping, etc. And as she progresses her needs will increase. I may be way off base but just from what you wrote I think you are asking for heartache.

Quilting brings calm

One of the consistent themes on this forum and the spouse forum is the difficulty of getting their loved one placed into a facility. People are emotionally, physically stressed way beyond their capability to deal with it and still can’t get them placed.   In fact, there’s a post today about a caregiver that now has heart issues due to the stress.  You’ve got your loved one placed, don’t put yourself in the position of not being able to later.  And yes, people are correct, you’d be placing  a very large amount of  stress on your marriage  having her anywhere where you were on call for her. Especially since  your father in law has needs too. 

One of the most important things my parents’ doctor told me was that they won’t be happy regardless of where they live.  He told me the most important factor for them was treat they were safe. He also told me to back off the daily care for my own health. 

rcbarr

You answered your own question > It's a pipe dream.

I have been caring for my mother for around 7 months now in my home all the time trying to figure out how I can plan the next step financially > Assisted Living with Memory Care.  OMG what I could tell you.  My mom was my sounding board my entire life, the person I went to and shared good times bad times, asked for advice on virtually everything.  Now 1 minute after we discuss something she forgot.  I just joined today so my story is long, I will stop here for now.  But I so HIGHLY recommend you keep Mom where she is, for your sake and hers.

LB3

Thank you all for taking the time to respond, I really appreciate it. My husband does what he can, but I'm really doing a lot of these things on my own and I get decision fatigue. It feels like everything carries so much weight and one wrong move could be catastrophic. I agree with everything you've all said, I just needed to hear it from the community to assuage my guilt because she's so miserable... but I need remember that it's the disease. Maybe I will find another companion to keep her more occupied.

*Ollie*

As someone who is taking care of my mom in our home, I agree with what everyone else said - keep your mom where she is.   When my mom started out here 1.5 years ago, she was okay-ish.  Now she's ready for memory care and everyday is an emotional struggle.  We are at the end of what we can do for her.    Finding the right place for her has been a whole thing unto itself so if your mom is already somewhere, let her stay.   I used to care so much about how she will feel when we move her but that is secondary to us reclaiming our lives.  Taking care of someone with dementia does not get easier.  That is not the trajectory for this disease.

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LB3

Yes, thanks, I spoke to an elder care attorney about Medicaid a few years ago when she was first diagnosed. 

Her finances are complicated (I was managing them even before her diagnosis) and the lawyer told me that transferring her assets into a Medicaid trust (so that she may qualify) may be so complex that it might not be financially beneficial in the long run. She is fortunate to have a passive income that covers her AL costs at present. I know this will increase with time, so I would like to help her maintain her passive income and, if an emergency happens, she can sell one of her assets. As for our home, I can rent out the bottom portion of my house to help cover the costs of the in-law suite. 

That said, it might be worth speaking to a lawyer again since it's been a few years, so thank you for the reminder!