Tips for placement AL or MC and how to transition an unwilling mother

kmd1212

Thank you for any suggestions or tips on how to identify a long-term care community for a very independent woman with dementia who is in full denial of impairments. She is currently high-functioning and I am not dealing well with the idea of moving her against her will and limiting her freedom so dramatically. I am confused what level of care she needs and whether to prioritize keeping her in a community she loves (an hour away) or closer to me.

Marianne*

Kmd1212, your post resonates with me as we're basically in the same spot; however, I think your mom might not be as bad as mine in the dementia path.  My mom is very independent and I'm getting ready to move her out of her 2,400 square foot home she loves.  Her apartment at an AL in the same town I'm in isn't as nice as one that is about a 3 hour drive for me.  She's gone back and forth from realizing it's time to go to "I'm not leaving; they'll need to come in their white coats to get me".  I've stopped talking about it as it's just stressing her out.  We'll probably end up having our daughters take her out to shop and eat for a few hours while my DH and I move her things.  Then, once at our house take her over to see the courtyards and garden space (she loves to garden and her apartment has its own patio, flower beds and courtyard space/access). This is when I'll slip out and they'll show her the apartment with her things and that she's staying.

This seems incredibly cruel to me.  On the other hand, putting her through the emotional drama of leaving her home and "saying goodbye" to it are equally cruel.  There's no easy answer.  It's all a nightmare.  

If you look at my posts from the last two months and responses it might have some helpful info for you.  My mom's apartment will be ready Sunday.  I'm thinking on moving her Mon or Tues.  I'm a wreck.  

zauberflote

Hi kmd and welcome to the club nobody wanted to join. You will find a huge fund of "lived knowledge" here, with caring folks who have btdt or are in the middle of it. 

My mom moved to a truly lovely 2 bedrm apartment when my dad died. She was... the age I am now: 69. She built a new life in a new community near my sister's home. She was happily independent, traveled a bit within her income, and obtained her second bachelor degree at 78, one class per semester! By her mid 80's, she became a drain upon my sister's energy and emotions-- sis was essentially running two households while working full time. She let Mom choose which of the only two ALs in town she liked (the drearier one, since Mom knew her good friend lived there but what she didn't know was that the friend had died but the staff were not allowed to tell Mom! So Mom was "consenting"... until she got there. 

Bro and I helped with the day-of move-in. Mom did ask to visit her apartment one more time to say goodbye. We let her. It was very moving. Mom was a highly intellectually and emotionally intelligent woman, and I'd watched her say similar goodbyes to several other homes. This won't work for everyone, I know, but Mom knew when it was time to leave, and asked to go. 

A major difference between your mother and mine is that Mom appeared to be independent but was definitely not. It was good to have meals appear on the table, clean towels in the bathroom, clean clothes folded on the bed, and the knowledge that she had backup in the building. 

When it came time for MC, the real reason for the move was that bro and I could no longer handle the travel between our far-away homes and hers, and... a hospitalization from hell that just about killed us. Mom didn't remember it, thankfully. But we sure did. So we moved Mom 600 miles to my city, where I was able to spring her from the ER before a visit turned to an admission. Mom was devastated. We were devastated. Mom's old friends were devastated to lose her, but being all younger than Mom, they understood. 

Wisdom here says to place the LO in an environment which is suitable for LO's worst days. Your mom is possibly stuck with anosognosia, an absolute inability to recognize that anything is wrong with one. Since we don't know yet where your mom is on the dementia front, nor what services are offered at the facilities you're considering, it's hard to offer suggestions to you. 

Others will be along too!

King Boo

Until we recognize the impairments of our LO's and accept them, we are our own worst enemies.

I found getting a neuropsychological evaluation very liberating (PhD neuropsychologist).  Validated my care decisions and killed off a lot of the protests of other family members over placement.

Virtually all of us think our LO is 'high functioning.'   The neuropsychologist was very helpful in telling me my LO had no safety awareness, no insight and no empathy, no sense of time.  Executive function was shot.   Having $150,000 go missing overnight because I did not lock down his account access was also very helpful.  We were fortunate we found it. 

Bingo - guilt gone.  Helped a lot.

As crappy as it feels to be responsible for the uprooting change of our parents, it's a whole lot better than walking into the house and finding them dead on the floor, skeletal from lack of eating, or having them wander off in the winter. Eating rotten food, dumpster diving, obsessing on the neighbors porch, etc.  It would have been crueler not to act.

It stinks completely.  And generally, it's the over responsible child that gets socked with the DPOA.  I could be my own worst enemy. 

But, when push came to shove, a deep breath was taken, placement was done, and after few weeks my LO was thriving.  Clean, washed, nourished, puttering around in a place where his oddities were part of the usual normal.  It was an amazingly positive thing.

Suzzin

There's a great book, "Being Mortal" by Atul Gawande. It talks about aging, dementia, assisted living, and hospice. He frames discussions around the parent/patient, not just from our point of view. It's been so helpful! 

I've found simple questions like "what are you worried about" or "what would make you happy" to be helpful for my own process.  Today my mom started talking in third person and said, "she doesn't want to move there because she doesn't like to mingle, she's isn't good at meeting new people". WOW! I had been trying to sell the place based on increased opportunities to talk to people. I know, my mom absolutely blossoms when she has someone new to talk to, but for her this is a fear.

The book talks about how a lot of AL places market to the kids and not to the parents. How parents don't necessarily want social time, arts and crafts, boat tours, Chinese classes....they want more control and independence. Now I talk to my parents about how much easier this will be for them, no worry about the roof, irrigation, hurricanes, AC, etc. How they won't have to have in-home carers because help is just a button away.

It be honest, I haven't convinced them yet but this is what I'm trying!

harshedbuzz

This is a difficult part of the journey for everyone. 

Some thoughts-

1. One of the best ways to determine the level of care needed is to stay with your LO 24/7 for several days in order to get a to get a true sense of how well they're functioning at home. PWD, especially in the earlier and moderate stages, can showtime for periods of time which might fool family members into thinking they're "higher functioning" than they are. 

I knew my dad wasn't firing on all cylinders, but since he lived with my mom I knew he was "safe". That is until I was called by the hospital as an emergency contact when she was deathly ill in the hospital. I flew to Florida and stayed with dad which knocked the scales from my eyes. The very first night I found him hosting neighborhood happy hour wear nothing but a bath towel. The next day he put a fork in the toaster knocking him clear across the kitchen. Later he crossed wires attempting to jump start a car. I was gobsmacked.

2. It's best to investigate what's available in terms of facilities. Firstly, does your LO have the assets or LTC policy to self-pay for a time before running out of money? Or will she be needing a Medicaid bed from the start? This can limit your options; some states allow Medicaid dollar to fund MC and some only fund a SNF bed.

You'll also want to tour different facilities. IMO, the ideal situation is one where a person can transition to a higher level of care and/or Medicaid bed as needed. TBH, most families who think their LO is ready for AL are deluding themselves. AL, except for a higher acuity AL for memory care, is not generally enough supervision or support for a person already diagnosed with dementia. Most are based on a hospitality-model akin to a hotel- residents are expected to get to meals and activities on their own without prompting and are free to come and go which can be an issue if someone is an elopement risk. 

My one aunt started in a AL setting and it quickly imploded. Checks were only made daily. If a resident didn't show up for meals, it was assumed they fixed something in their kitchenette or went out. The other residents were wary of my aunt who could not keep up with them cognitively, so she was ignored. In the end, she broke a hip in her unit and was on the floor for most of the day before the bedtime medicine nurse came. 

3. In general, if you are the person who holds the POA for health care, it's best to move her near you. It is a rare- and I mean glittery-unicorn rare, friend who remains engaged and available to someone with dementia. Friends drop off not just because your LO will become unfiltered and less able to engage meaningfully but also because her older friends will start to have their own issues that impede maintaining contact. 

4. Denial is likely anosognosia. A condition where a PWD is incapable of appreciating that they have had a cognitive shift and are not as capable as they once were. Their reality is that they are just as they always have been. Suggesting otherwise will feel like gaslighting to them.

5. When they time comes to move, it's generally best to create a narrative about why a temporary move is needed. Perhaps a visit to you with a stay in "a nice senior apartment because I know you like your own space" or "the house needs a new sewer line, so you can stay at this hotel until the work is complete". 

I got dad into MC by telling him it was a fancy private rehab center because his doctor wanted to get him steadier on his feet. 

Good luck.

HB