Living w/ me or in AL?

MP8

Been following this forum for a month. It's been like falling into a dark pit but finding a diamond.

I am trying to make a decision about care for my mother and would appreciate any insights from your experiences.

For background: One year ago, I moved my mother across the country with the intention of helping her find a place nearby to live, where I could be of support. The move itself was precipitated by a sudden decision by my brother, who had lived fairly close to my mother, to move nine hours away. 

Once she arrived here, it became clear that she needed more support than the transportation, technology, and finances assistance I had anticipated. I suggested she continue to live in my house instead of finding an apartment. This fall, she was diagnosed with Alzheimer's. Based on the functional descriptions, I think she is at Stage 4. 

I work in an academic setting and was allowed to be on campus only one day this semester, and my son has been able to work remotely on that day. However, next fall, I am scheduled to return to campus four days/week. In addition, I need to be out of the country for two weeks in December for my daughter's wedding.

So, what do I do with my mother?

The geriatrician recommended a great dementia-focused activity center. My mother went once and seemed to have a good time. When I took her for the second day, she attacked me with her cane and took off towards the highway a few blocks away. Talk about dramatic! Never mind that it was 10 miles from home and she had no clue where she was (or where home was). She was NOT going to be with those "old people." The center staff helped me get her back to the center and I finally had to take her home. She is now on medication (thank you, Zoloft), and this has stabilized her mood (she was previously screaming at me every day, which was uncharacteristic of her personality - I don't think I'd ever heard her yell before). However, I also haven't tried to get her to do much that she hasn't wanted to do. I don't know if I can deal with trying to get her back there and never knowing how it's going to go.

I've thought of trying to bring in home help for companionship while I work but it is very expensive and her long term care plan doesn't cover in-home help. I'm also concerned if there's a last-minute caregiver change, as I have two large dogs. 

For both the day center and home help options, I'd have to get her to an AL for respite care for my December trip. That could also prove difficult and traumatic for my mother and me.

The other option, which I'm checking into, is assisted living. I am fortunate to live in an area with a number of facilities nearby but I am concerned about that, too. She's settled in here, she loves the dogs, she can work in my garden, etc. I talked to several friends/acquaintances who say that AL is like a cruise ship, and if she doesn't participate in the activities, it's lonely. Another concern is that English is not my mother's native language. She was fluent in English but there are an increasing number of days now when I have to speak to her in Japanese for her to understand. I also know that getting her to agree to go into one will be another battle. Culturally, she expects family to provide care, and I feel guilty about that, too.

At the same time, I am having a hard time focusing on my job and keeping healthy, etc. Aside from a weekend away while my son stayed with her, I haven't had a break in a year.

Financially, we have to pay for 90 days for AL, then her long-term care policy kicks in for three years. I don't know what we do after that but that seems so distant right now. 

In short, I'm feeling guilty, frustrated, overwhelmed and like no decision will be right.

What kinds of things did you consider when deciding whether to keep a LO at home (with you or otherwise) or move into AL? I would really appreciate any ways to think about this as I am just stuck.

loveskitties

Other major things to understand while considering your options is that your mother's illness will get progressively worse and there is no time table to predict that downward slide.

I understand the cultural issues regarding care for the elderly.  What you need to define is what is "care".  Everyone here has difficulty with potential placement in a facility over in-home care.  Seeing that she is safe, feed, clothed and has a place to live does not have to mean in your home.

Assisted living (AL) may or may not be an option.  An evaluation by the facility may determine she is better suited to a Memory Care environment.

Having to make these choices is very difficult.  Making a Plan A (what you prefer) and at least a Plan B (what you have to do) is something to do sooner than later.

Wishing you both the best days possible.

LaurieRZ

My mother refused to even consider that she might have to one day leave her home. She kept saying that maybe she would have "mild" Alzheimers. I went ahead with fixing up a room for her at my house knowing there would be a time she couldn't live alone. 

When I took her car away in June/July, she was so mad that she called me almost daily (sometimes 10 times a day) about her car. It's started to get very ugly and she would cuss me out and tell me to get out of her life. This was not my mother. I knew it was the disease, but it didn't hurt any less. I was so stressed I had a hard time focusing on work and I cried all the time.

 During one of my phone calls to the Alzheimer's hotline, they recommended I move her to an AL when the time came instead of moving her in with me. They had some really good points and it helped me let go of the guilt a little. They said if she moved in with me now and then moved to an AL when she got worse, it would be harder for her to adjust. I'm an only child and they pointed out that if I got sick or had to go to the hospital, there would be no one else to take care of her.

I had no idea how I would get her to the AL and I kept thinking if she would just have to go to the hospital then I could move her from there. The problem was my mother is healthy physicially. By some miracle, she had to go to the hospital in December due to increased confusion. I had to call 911 and they broke down the door. They think she was dehydrated, but not by a lot. I was able to move her to the AL (told her it was rehab and temporary). My mom was not a very social person and I never thought she would participate in the activities, but she does. Her short term memory is so bad that she thinks she goes home every day and sleeps and then comes up to this place to play games and hang out with people. I've been very lucky in that sense.

I know that she will eventually run out of money and I don't even want to think about that, because it would mean going to a Medicaid funded NH. Once again, I'm going to hope something takes her before that time.

MN Chickadee

I would start with seeing an elder law attorney. Even if you already have power of attorney and all legal documents in order the attorney can help with financial planning for her care. You will want to know how the transition to Medicaid might work when her LTC insurance runs out and this is specific to the state she lives in now.  

Home care is difficult to orchestrate but some families do. However it seems most who do it successfully have fewer obligations than you have - most are retired or don't have a job outside the home or have a lot of extended family members nearby willing to help. Even if you find 2 or 3 shifts of quality caregivers to cover each day that does not make it easy street. Some will quit or move on. They will call in sick and you will have to cover etc. It is a commitment I would not take lightly. Her needs will also progress into needing help with toileting, bathing, constant entertainment and safety concerns etc.  Only you can decide what is best for your whole situation, but if it were me I would find her a quality facility before your trip at the end of the year. Use therapeutic fibs to get her there, call it temporary, visit often, make sure she has the best care possible, and spend the rest of my time focused on my career and own health. You could sink many of your "good" years into full time caregiving and come out a shell of yourself on the other side. It's not an easy transition or journey, and even in the best of circumstances there is room for guilt and second guessing by the caregiver, but this is normal and undeserved. It was hands down the hardest thing I have ever done to put my mother in MC but in the end it was the right thing for all of us. She got the care she needed, even better than I could provide at home. Even when they are in a facility there is still much to do and will add to your plate with a full time job. 

Side note - often when a family is willing to consider assisted living that ship has sailed, the person is in need of actual memory care. Make sure if you decide on a facility that it has the dementia care she needs. Dementia training, higher staffing ratio than AL, activities and enrichment geared to dementia etc. Many normal ALs does not have the structure and support a PWD needs. 

Good luck and let us know how things go. 

BookBuffBex

Hi! I'm new here and still in the early stages of dealing with this myself.  I think you have to consider your own mental health.  I lived with my mom for 5 days in early 2022 while my dad was in the hospital. She was confused, repetitive, and would only let me do certain things to help around the house. I got yelled at if I tried to throw away scraps of paper, or empty pill bottles.  By the time I got home, I was in the throes of a fairly serious depression. I sought immediate treatment for myself, but as a result of that experience I vowed that I would never stay overnight with her again. I truly believe that you have to make your own health a priority before you can help anyone else. It became clear to me in November 2022 that my parents could no longer live independently and with the help of hospital social workers and a private consultant, I moved them both into AL. It's an adjustment, but it's also a huge relief to know that your LO is safe 24/7.  For me, that relief and maintaining my sanity in a way that allows me to do my job and care for all members of my family as much as I can, outweigh any guilt I feel over the placement in AL.  It's not easy, and you may have to resort to some trickery to get her to AL, but in the end it may be what is best for you both.  Good luck.

Quilting brings calm

Every single one of your reservations are valid.   

Here’s the criteria I used:  

I worked during the day

I have  other commitments 

I have a spouse who has health problems serious enough to be on disability.  He has diabetes, diabetic retinopathy, macular degeneration, does not drive at night and has anxiety and depression 

I have two adult children who each live over 3 hours away in different directions. One has a young daughter.  One son has epilepsy and sometimes can’t drive for six months at a time

I live next to cornfields in a very small town of 500.  I have open stairs to the basement  and garage.   

Mom uses a walker but wants to get by with a cane.   Technically she is diagnosed with mild cognitive decline, but her daily behavior is the mild dementia stage  

Step-dad should use a walker but tries to get by with a cane. He has multiple serious health issues and was recently diagnosed with mild dementia. 

I injured my back in 2021 and I cannot provide support while they walk as I will injure myself if I try to keep them from falling. I’d like to avoid using a walker myself for as long as possible 

I don’t really get along with my parents.  I had an abusive childhood  

I cannot commit to being a 24/7 caregiver for years  for anyone but my spouse  

I’m the only one of six siblings and step siblings even acknowledging my parents existence. So no help of any kind 

I need my home to be a sanctuary and don’t really want anyone living with us. 

My spouse and I need an occasional vacation.  

My parents are in assisted living and I still find myself handling their medical appointments, finances, grocery store trips( when my step-dad allows) - they buy way too many groceries, other shopping, multiple daily phone calls and weekly visits etc.  it’s a lot  

Before my parents went into assisted living, my mom was left untreated for a UTI because the doctors in the state they lived in then refused to believe she had one. By the time we got them to move back home she had urosepsis and acted like a toddler 24/7.   Although we had visiting nurses once a week while we prepared to move them, no one was of any real help - other than to agree she at that point needed a nursing home - but no one would  help with that.  We tried overnight caregivers so that we could sleep- my parents made it so difficult that we never got one to come after day 3.    Once we got them back here, she was in the hospital for a week, rehab for a month, and then assisted living.  She’s much better than she was but neither of them can live independently.  

Anonymousjpl123

I can only echo what others have said. Was in a similar situation not that long ago (last year around October) and it was super hard. I’m my case, a few things helped. When possible, I tried to give her agency or choices. She had memory issues for years but they escalated rapidly after my dad died. For about six months she lived alone in their condo. I visited every two weeks and soon realized it was much worse than I knew. 

Thanks to the Alzheimer’s hotline and a few unexpected emergencies (culminating with someone calling adult protective services). Finally, I gave the choice or either 1) AL with memory care near her home, 2) AL with memory care near me, or 3) living on her own or at my house with full time care. I knew she would hate and refuse the 3rd choice, but we (me and sister, who lived close to her old place) agreed we would make it work no matter what. 

She opted to move near me and I made myself a few promises. These things helped. 

We only looked at places close e enough that I could visit easily. I knew she hated the idea of assisted living (we had to frame it as independent living with support), and, despite significant memory issues, that she was worried she wouldn’t have intellectual peers. She is very educated and a lot of her ego is tied to intellect. So I called everywhere we visited (5 places total) and told them to stress to her how residents came from all backgrounds, professions, education, etc. 

I also promised her and myself that if it was absolutely awful she could move in with me, which gave us both a cushion. She had stayed with me for a few visits that were weeks and I knew it would require WAY more work than I expected. So I was, and am, prepared. 

The move was stressful. It triggered greater confusion and disorientation for a while and I worried we did the wrong thing. when the movers and my family showed up at my house to drop some of her stuff off (she had been staying with me leading up to the move), she screamed what were they doing there,  thinking my house was her home of 40 years. 

All said, I am very happy she moved to AL with memory care. Even on the AL floors I would say 70% have memory issues. That is super important because staff *do* know how to deal with her bad days, when she is more confused. Residents don’t shun her. It took six months, but she is now truly happy. She has some friends. It’s a great environment and location. And she is more connected than she has been in years. 

Like you, I have a somewhat demanding job and I have a lot of guilt when I visit less than 3 times a week, or take even a little time for myself. Therapy  is helping with that. Overall, it’s been good for everyone. 

Finally, I called the hotline at least 3 times they are staffed by trained specialists and are really helpful so I can’t recommend that enough.

mommyandme (m&m)

Let me first say that I kept my mom in “her” home which was directly behind my house when we moved her here.  I say “her” because it is my husbands and my rental, we vacated the tenants then moved her and all her things there. Worked pretty well but my brother and I knew Plan B was always an option.  As she kept declining the thought of moving her to a facility became less of an option for me.  My mother was a compliant patient for the most part and her mobility declined so she wasn’t a busy wanderer.  It worked but it was very hard.  I was prepared for the worst of things by getting a CNA license.  Long story…

Anyway, my first thought when I read your post was since your initial idea was getting her into a place of her own, close to you, you should probably go the facility route.  She’s not, or soon won’t be, able to live alone.  You envisioned your space as your own, not her living with you.  I think you were on the right track with your gut instinct, it’s just now you see she needs more assistance and caregiving.  With all that you have going on with your own life, you’re still going to have to caregive even when she’s in a different safe place. My mom couldn’t have lived in our house with the stairs and the dogs. And… I would’ve gone completely crazy if I didn’t have a space to retreat to.  We would’ve moved her for sure.  Walking back and forth across the backyards was doable. Although I did sleep there every night and still do even though she’s gone.  Another weird long story…

I think making decisions for how our LO will live the rest of their life and where they’ll die can be PTSD worthy.  It was for me. I wish you the best in your decision.  Remember living your best life is very important too. Take care of yourself first, then you’ll be a better caregiver for your ma.  

MP8

I wanted to say a quick thank you to everyone who has shared their experience and perspectives before we lose the message boards for a few days due to the update. You have lifted my spirits and given me much to think about. Will reply again when we have the new platform. Take care, everyone.