I'm a long-distance caregiver for an elderly cousin who is in the middle stages of dementia. She still lives independently, but only because she has a gentleman friend who looks out for her, makes sure she gets to meals and doctor's appointments and tries to make sure she takes her medications. This has worked well for a couple of years, but it's not working well now; he himself is growing increasingly confused, and the information he gives me is increasingly garbled. She refuses to follow doctor's orders, cancels necessary appointments, and he can't make her go. When she does go to an appointment, he accompanies her, then confuses the information she's given. She regularly loses medications, he replaces them, then the originals resurface and now there are multiple bottles of the same meds floating around the apartment of someone who's confused about what to take and when. (FYI, none of her conditions are life threatening; current meds include glaucoma eyedrops, scabies cream, and iron pills for anemia.)

I'm trying to sort out what's next, and could use some help. She lives in a continuing care facility, and the staff there has given me three options:

Option 1: Assisted living, where she'll have a room instead of an apartment (she has a lot of treasured possessions and will be deeply upset to have to downsize) but her medications and doctor's appointments will be handled by the medical staff instead of a confused companion -- which would be a great relief to me. Downside: She will be traumatized by the move, he will be traumatized and ... for what? So she can live longer and spend more years in memory care? Memory care is her greatest fear.

Option 2: I hire an outside care manager to oversee her care. Downside: She really can't afford it, and she doesn't trust strangers coming into her home anyway.

Option 3: I leave things the way they are. She stays in the apartment and is happy, but continues to lose her medications and/or take them incorrectly; her doctor's appointment information is garbled by her increasingly confused companion, etc. (I am of course on the phone with the doctors, but it's not really the same.) Downsides: Obvious. Upside: She's happy, her companion is happy, but her increasing physical needs are not addressed.

I would love to hear other perspectives on this. One thing to keep in mind: I do not have the option of moving her. She has paid into this facility, it is wonderful, and I have to play within their rules. So those are my three options. The facility (and her doctor) are recommending assisted living, because they are looking out for her medical needs, but as her POA, I have to look out for both her medical and emotional needs. And I keep thinking, "I move her, and for what? So she'll get better medical care, and live longer in memory care, which has always been her greatest fear?"

Thanks for any and all thoughts on this.

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Can you encourage her friend to visit her in the AL, they should be close enough to still enjoy their relationship.
Helpful Answer (1)
LauraJMT Mar 2019
I'll definitely do that, and I talked to his sons, who'll also encourage him to stay involved. She can still eat in the dining room and he can still pick her up for meals, so that will hopefully make the whole transition feel more normal for both of them. Thanks!
Consider taking some photos of her cherished possessions before removing them from her current apartment. I'm sure you can only take a few small items into AL, but sometimes elders are comforted by photos of their possessions in an album or even posted on the wall. My father had a collection of antique revolvers and a few long guns in display cases in his house. I photographed the displays and had poster sized prints made at Walgreens for the walls of his MC room. The were almost the same size as the displays in his house and he absolutely loved them. I also had a album with photos of each firearm he could show to visitors. He never stopped complaining to me about wanting his stuff but I heard from staff and other family members that he enjoyed seeing and talking about the displays.
Helpful Answer (4)
LauraJMT Mar 2019
That's a great idea - thanks so much!
Thank you, everyone, for your thoughtful responses. Caring for someone with dementia is a sobering responsibility, and having a place to turn for other perspectives helps so much. I really do appreciate your input.

We've decided to go with Option 1 - moving her to assisted living. We'll try and lessen the trauma by coordinating the move with some surgery she's going to need in the coming weeks; she'll have to go to the nursing unit or assisted living for the recovery period anyway because she's going to need wound care. By the time the doctor breaks the news to her that she can't go back to her apartment, she'll have been there for awhile, so with luck she'll be more accepting.

Thanks again for your responses -- they were very helpful to me as I thought this through.
Helpful Answer (3)
AnnReid Mar 2019
You may find that someone will have to “break it to her” but maybe not.
My LO still says she needs a ride home, after almost a year in a very nice memory care unit, but if I say “It’s very windy out” or “You’re paid up until the end of the month” or “Your phone is out of order”, she almost always respond “Maybe I’ll just stay here.”
And you know what? After a year, it STILL hurts me to handle the situation that way, but having seen HER get TERRIBLY DISTRESSED if I try an any more fact based approach, I’m choosing to do what I do.
How I MISS HER! But here’s another “Know what?”- when I sit with her and we chat about my grandchildren, or how terrible the traffic is in town, or some old story about our Church and the people who go there, I can still hear that old zing in her voice and take consolation in the fact that I still have SOME of her.
So for now, we both can distract ourselves in the moment with what we can still find in each other, and for ME, that’s good, and as nearly as I can guess, good for her too.
First- No one in this situation, and no one who cares for and loves someone in this situation, is EVER HAPPY with the disruption from the prior arrangement, even if the the previous arrangement was dangerous and unworkable.

Next- if she has been diagnosed as having the symptoms of dementia, your LO’s
emotional reactions are effected by the disease, so although they are clearly important and must be considered, her physical welfare and safety in her present condition and in her future, may be a higher priority than how she feels about the decisions that are made by others on her behalf. Her prior comments about memory care may have been meaningful to both you and her in her past, but may not have the same meaning, or any meaning to her now.

And then, the risk of falls and broken bones escalates with age. If she were to fall while in her independent living setting, would she be monitored and receive prompt assistance? If her fall resulted in a broken bone, would she be able to return? Would the adjustment to an assisted living setting be easier then, or harder?

Her physician may hopefully know her on more levels than only the physical/medical, so if you’re able to have a phone consultation with h/h, it might help you in your decision making capacity to ask for an opinion about her emotional outlook.

Sadly, you have no “good” decisions to choose from, and none of us do.

Your job is to make the best of the less-than-good decisions with compassion and all the factual information you’re able to pull together. From your well thought out question, your ability to do whatever you can for her is evident.
Helpful Answer (6)

I think your only choice is option 1. It is obvious that she needs more care than the friend can provide, especially if he is developing dementia himself. Assisted living is not going to extend her life, nor his. She will be in a place where she is well taken care of and meds handled correctly.

As CM asked where are they living? Are they together?

When my mom went to memory care her hubby of eight years moved to assisted living in the same facility. He did not want the move, but was able to spend a portion of each day with her. Not ideal, but mom needed the additional care. She became a danger to herself and others and there really was no choice.
Helpful Answer (1)

First off - on your option 3, there, I would seriously question whether her companion will be happy, for very long anyway. This is already beginning to overwhelm him and it's going to get worse. Dodgy for both of them, don't you think?

Is it absolutely out of the question for them to move together to Assisted Living? I'm only wondering, but if they joined forces would they perhaps be allocated and able to afford more spacious accommodation? Where does he currently live?
Helpful Answer (5)

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