Memory Care Facility Stigmatization

Nowhere

It isn’t just the larger aggregate society fearing and pigeonholing individuals with degenerative brain diseases, it is also the administers supposedly serving our cognitively dying loved ones. My husband and our family has suffered another blow due to misconceptions of the disease.

If there is an ideal dementia resident my husband now embodies one. It wasn’t this way during his middle Alzheimer’s passage when he was strong and fought like mad, being unaware his brain was full of tangles, tau, and black holes, but still possessing strangled strands of dendrites thinking messed up thoughts that he was healthy, normal, and definitely did not belong locked away in a memory care prison. He was an active, if not polite, window breaking exit seeker, who believed he was married to me in the form of a fellow female resident, and the two of them would hold hands, kiss to comfort, and fruitlessly, foolishly, plot to hold onto their right to access the larger world, live together, standing by the door with their laundry baskets packed, waiting for the next bus out of loony bin town.

Fast forward to the last two years and my husband is well beyond crafting a convoluted complex story. In his own words, “I can’t think”. He no longer knows he was married or has kids. Any and all fights (never aggressive against people) are out of him. He walks across the room pleasantly, possessing no higher order thinking missions, he pleasantly answers questions in one word sentences, and still uses the commode. The aides at his new home adore the ease of him and wish they had 38 more (present memory care wing capacity) just like him.

His name came up after a ten month waiting list for a memory care assisted living home with 14 residents and a private room. This home looks more like a private home than his present sterile hospital like shared room nursing home. It even accepted a state aid waiver for which we’d quickly applied. It would suit his ongoing needs beautifully, and he would be a lovely quiet, well mannered, resident whose family would visit daily. He flew through the admission director and activity director interviews, and the RN’s exam. The director of the facility signed the lease and we were given the key. During the signing a mention of gratitude for this place and this peaceful late stage was shared. Later that same day, a Friday late afternoon the same director, never having met him, sent an urgent message to all parties involved — it was a move in HOLD! By Monday, a rescinding offer of the contract was in place. His middle road relationship behavior would bar him from acceptance!

His family is devastated as we love him and wish him and us a peaceful end in his last stage of life. For him to have a private room and shower and tranquil place to visit. Denied because of fear he’d regress into earlier behaviors is ridiculous. If she had only spent time with him and seen him for who he is and isn’t now. If she’d reached out and asked his present memory care director, but no, they couldn’t risk it. Now is all he has. This breaks my heart for us.

White Crane

This breaks my heart. I am so sorry.

M1

This is indeed devastating. And unfair. Wish there were some recourse. But it's so exhausting to have to keep fighting and pushing. You had a signed contract in hand!!!!!

Ed1937

This is the first time I've seen anything like this on the forum. I'm sorry. You would think they could do better.

Beachfan

I am sorry to read this, but perhaps it’s a blessing in disguise. Clearly, this facility has its flaws (or staff with flaws) and might not be the best fit for your DH. Maybe his present placement is best; after all, they weathered the storm of mid stage Alzheimer’s with you and DH. I am sorry; I know how comforting it was to have DH in a place that I truly loved during his 17 month residency and final transition. I wish you well.

dayn2nite2

Unfortunately, this is similar to life pre-dementia - one's past will never be erased and judgments and opportunities will often be based in part on a person's past behavior and activities.

It's a two-sided issue - while the placement would be ideal for you and him, the administration would also be taking on a liability - if any of his past behavior returned and caused harm or distress to other residents, they knowingly admitted him and put other people at risk. I probably wouldn't take that chance either.

housefinch

I know it sounds unfair and unkind. Sadly, they have to consider everyone and the unpredictable nature of dementia and the poor access to geriatric psychiatric care. This may not seem comforting, but at this stage it’s possible your PWD will care less than you and your family will about the facility layout, etc. I’m sorry, though—-our whole system stinks and doesn’t serve anyone well. Except CEOs of hospitality model IL places that only accept private pay.

CindyBum

Damn. That is beyond frustrating. It's cruel.

sixcats

https://alzconnected.org/discussion/68517/memory-care-facility-stigmatization

Don’t know where to begin. Your post struck me. You are so intelligent and have amazing ability to put your feelings and experiences in writing. My BH got diagnosed about 4 years ago right before COVID. After getting him accepted into his third memory care facility here in Los Angeles, he got the worst case of COVID. Has not been even close to his baseline. I have just been informed by his doctor, my sweet Jim is now recommended for hospice. He turns 65 on May 19. Way too young to have Alzheimer’s. But what age is the correct one? He had an amazing career as a voice over actor for 35 years. We had (or have) 30 years together. He has so many fans who wonder what’s happened to him. I was always his biggest fan and we had so much fun together. Please stay in touch. Janice

Nowhere

Thank you for caring. To those who comment he might revert back to middle stage behavior, perhaps I wasn’t clear that it’s been two years since he has lost ability to construct a complex thought, let alone connect a new relationship, or make a plan. He is a peaceful man who wouldn’t hurt another. He has never been a womanizer nor a sexual predator. He was never dangerous, rather he was frightened and angry as he couldn’t see he had dementia and thought he was mistakenly locked up. How would any of us behave being locked up in a memory care facility believing we were sane?

Presently, he doesn’t know he has a roommate, nor even a room when he’s not sitting in it. He sits solitarily in the dining room and does not seek company, nor initiate conversation. How can he revert as he’s entered irreversible advanced dementia with an invisible eraser wiping away more each day? He’s simply lost and it isn’t until family visits that his blanks are temporarily filled in. He’s gentle and full of pleases and thank you’s and yes or no’s when asked a question. He’s no longer knows if we are married, so when I say goodbye, he parrots goodbye back. Two years have gone by without exit seeking.

I do not believe someone ill with Alzheimer’s should be condemned for earlier behaviors long after they have ebbed. Nor do I believe, healthy individuals who make poor choices earlier in life and have changed should suffer condemnation for the remainder of their lives. Life is tough, people needn’t make it any harder by the lack of understanding and/or forgiving. I remain extremely dismayed he was stigmatized and pigeonholed and deemed a risk to others when it’s not who he is or ever was.

I need to let this go, because if there is one thing I’ve learned, it’s this: If a memory care facility says they can’t take care of your loved one, believe them. You wouldn’t want them there!

harshedbuzz

@Nowhere

I'm sorry you weren't able to get the placement you wanted. MCFs operate a bit like private schools-- you are accepted at their pleasure-- money, alone, doesn't get you a place. There is nothing fair in the process, but then there's nothing fair about dementia. Full stop.

Sometimes MCFs cherry-pick their resident population for ease of care or to balance the workload in the unit. While you see your husband as an ideal resident, they may be looking to bring in someone who isn't so far along in the disease progression to socialize with other residents and take advantage of their activity programming. While both dad's and my aunt's MCFs would allow residents to age-in-place, they preferred to bring in folks who would initially participate in their community.

But I agree with @Beachfan that this is likely a blessing in disguise. Dad was rejected by mom's first choice of MCF. He did well on the interview but was rejected because his specific kind of dementia has a reputation for "behaviors" he never had. In the end, he went to my preferred choice (same chain as Beachfan, different location) where his care was remarkably good. I think mom was focused more on the aesthetics of the first place-- the decor was nicer and the residents more cherry-picked or else they toured her through Personal Care which is similar but not for folks with dementia. FTR-- he never exhibited those behaviors ever.

It sounds like his current facility fits him and that he's well liked there. Is he very aware of how sterile his current place is? Does it bother him? The place where dad ended up was not as fancy as some others-- it was quite lived in but not shabby. Old dad would have bristled at that, but new dad never noticed.

One caveat, as my aunt progressed, her sister who was guardian found that the MC side of the CCRC while great socially, wasn't as good with the hands-on hygiene care-- prompting tasks rather than making sure they were done as skilled nursing would be and moved her to the higher level of care in the SNF.

HB

Nowhere

Thank you, HB.

The present setting has too many residents in a small hospital like space. There are many vocal, roaming, confused residents routinely wheeling and wandering crossing other resident’s personal boundaries, helping themselves to another’s plate of food, their clothing, puzzle pieces, beds, and bathrooms, resulting oft in screaming and yelling by the offended. The ratio of aides to residents is lawful, but they can’t be everywhere. And when one resident gets upset, the action upsets many others. There are just too many residents in too small a space to be a peaceful setting. Buzzers and alarms sounding frequently, too.

I’ve been with my husband when someone other than his roommate entered his room to say hello and then used his potty. We’ve returned to an outing and found yet another resident sound asleep in his bed all tucked in. My husband’s reaction was mildly surprised , stating, “There’s someone sleeping in my bed”, but he didn’t yell or act out. One lady likes to enter a room, and uses that room’s wastebasket to fill it with contents “ to go”’ and then absconds with it.

This is why I’d hoped for a larger facility with one third the residents of his present facility. He/we would have been afforded a more peaceful existence.

But, yes, I’m thankful the handful of long term employees return as it is often a thankless job. They understand when, where, and how to proactively head off to prevent altercations, however for every experienced long employed aide there are equal number of revolving door new hires.

I visit him sometimes three times a day for my piece of mind, as one thought replaces the prior, he recalls nothing after it’s happened, and he’s oh, so, vulnerable.

harshedbuzz

@Nowhere said:

There are many vocal, roaming, confused residents routinely wheeling and wandering crossing other resident’s personal boundaries, helping themselves to another’s plate of food, their clothing, puzzle pieces, beds, and bathrooms, resulting oft in screaming and yelling by the offended. The ratio of aides to residents is lawful, but they can’t be everywhere. And when one resident gets upset, the action upsets many others. There are just too many residents in too small a space to be a peaceful setting. Buzzers and alarms sounding frequently, too.

I’ve been with my husband when someone other than his roommate entered his room to say hello and then used his potty. We’ve returned to an outing and found yet another resident sound asleep in his bed all tucked in. My husband’s reaction was mildly surprised , stating, “There’s someone sleeping in my bed”, but he didn’t yell or act out. One lady likes to enter a room, and uses that room’s wastebasket to fill it with contents “ to go”’ and then absconds with it.

Sadly, many of your complaints are issues were had at both dad's and my aunt's very nice MCFs; a change of facility may give more space, but it won't necessarily remove these kinds of irritations from your lives. I suspect you'd have had more of the same behavior but perhaps in a nicer space. A private room would be nicer for you both.

Dad's facility had 4 hallways with 10-12 rooms, about 8 or 9 residents, a kitchen and TV lounge in each with 2 aides from 7am-11pm. That's actually a fewer staff than would be allowed in a SNF in my state. We had all the issues with other confused people with dementia violating dad's space, taking things (this is called "shopping"), using his bed and bathroom (a man even climbed into my aunt's bed with her in it). We often had meals interrupted by other residents grabbing food-- especially if I brought dad something from a fast-food place or home. Waiting until after the rest of the hall had lunch didn't work because there was one man who guarded the dining area as if he owned it. In addition to the wanderers, there were those who yelled, cried, sang (the man who climbed into bed with auntie had been a cantor and used to break into song with a commanding voice) and lashed out in some way. I got hit once walking to get a snack for dad.

HB

Nowhere

Yes, agreed, again. Thank you for sharing about your dad and aunt. It’s good for me to remember that I burned out taking care of him at home through his paranoia and delusion middle stages and now here are almost forty residents all mixed together. It is likely to be rare that it feels like anything close resembling a “rest” home!

ButterflyWings

Would you want to bring him home? Maybe that is an option, especially if he qualifies for hospice support due to any other issues at his late stage. If you get to the end of your rope, it is a thought.

I am SO sorry for all this. Such a bait and switch, and it really does seem so unfair and ignorant of how progression works. Keep your chin up @Nowhere

Nowhere

Thank you! He is a walking, minimally talking, unable to reason or craft a compound thought, physically healthy, but considered in advanced dementia. I have good news!