If I Had a Million Dollars

Where to begin with what has transpired in the last few days/weeks?

M remained in the behavioral health unit at the hospital, no availability in the memory care facilities that were willing to accept a 59-y/o dementia patient (although they DID accept my $1000 deposit EACH to put him on their waiting list) and M’s medications remained sedation and anti-psychotic drugs. For a dementia patient.

Change occurred when my older son and then my younger son and I went to the behavioral health unit to visit M. When I worked for a local hospital, there were times I had to help cover lunches in the behavioral health unit, so I know what those areas can look like. The hospital I used to work for looks like the Taj Mahal compared to the area M was staying in. I’ve never seen such a depressing, stark place in my life. It looked like a prison. With shouting, yelling people being held in other rooms.

Part of what made it so bad was that our older son went by himself, so he had no one there to support him. Then, when our younger son and I went a few days later, we were only allowed to go see him one at a time, so our son was again by himself as he was seeing all this. I know that they’re both adults and neither one of them needs their hand held, but it would have been nice for someone to have your back when you’re seeing your dad in a place like that.

What did it do for me? Emotions took over. I stopped thinking rationally about M’s care and what was best for him and I started thinking with my heart and with the rose-colored glasses firmly in place. One of the memory care properties where we were waiting for an opening also had an independent living area ($8,000 for the 1^st month, $3,300 a month after that) where we could move M in with a full-time caregiver ($350 a day for the caregiver, plus meals) until the opening in memory care comes up.

Do I have this kind of money? No. This would mean dipping into our retirement savings, but this is my husband. Am I going to let money stand in the way of him getting the care he deserves? Absolutely not. If this means I’m wiping tables at McDonald’s when I’m 90, then that’s what it means.

I pulled the trigger and all the strings. Moved heaven and earth and got M out of that horrible place on Friday afternoon. Had to get movers to get his furniture into the apartment, get groceries and toiletries in place and get the caregiver lined up and ready to go. The caregiver couldn’t be there until Saturday morning at 8 am, so I would handle it until then.

When I picked M up, I brought clothes to get him dressed and it was a challenge – but we got it done. The hospital said they had called in prescriptions for him to our local drugstore and we were on our way. I took him straight to the independent living apartment, thinking I could get the prescriptions later (mistake) and tried to walk him into the building. He was so sedated and weak from being in the hospital, he fell twice in the parking lot and someone from the property had to bring a wheelchair out to help us get in.

That night was hell – no other way to describe it. M slept from 11 pm – 12:30 am and then again from 2:30 am – 4 am. And that was it. Other than that, he was up and moving. Walking around, chatting with himself, picking imaginary things up off the floor, moving items around the apartment, rattling the door, shredding tissues and just moving, moving, moving. I was finally able to cut his fingernails, shave him and give him a haircut, which made a tremendous difference. When I picked him up at the hospital, he looked like an escaped convict. I also helped him get a shower and some breakfast and it appeared the morning was off to a good start.

When the caregiver arrived, I ran to the grocery store to pick up a few things I realized I had forgotten. As I pulled back into the parking lot, the property was calling me to let me know there had been “an incident.” Turns out M had escaped from the caregiver (she was accustomed to sitting with little old people to keep them from getting themselves into trouble, not chasing after a young dementia patient) and he had hit her when she tried to put a mask on his face, walked into another resident’s apartment (scared the poor man) fell up the stairs, punched the wall and cursed at everyone.

It was a scandal!

The caregiver could not get over the fact that M hit her. I apologized profusely, but she couldn’t let it go. The head of the memory care unit came in to ask about what was going on, and when the caregiver started up again about being hit, the memory care head said “yes, these things happen with dementia.” I could have kissed her.

I also got a call from the director of the property and she wanted M out of there ASAP. After she talked to the memory care director, she changed her mind and said he could stay, but that I would have to be his caregiver and manage him. I agreed and got M in the car to go get his prescriptions.

Here’s a surprise twist: the hospital had not called them into the drugstore.

After I called the hospital and had a meltdown, we got the meds (nothing to help with anger or violence, because “those are only administered at the hospital.”) and got back to the apartment. The afternoon went fairly well until about 4 pm when, as usual, a switch flipped and this time, M came after me. All this time, I thought I could handle him, that I had the magical powers and could handle whatever came up. Turns out I can’t/couldn’t. I was afraid to fight back because I didn’t want to escalate the situation but I didn’t know what to do except to take it and try to protect myself.

And call the police.

For the first time in my life, at 60 years old, I’ve become someone who had to call the police to help her because I couldn’t help myself. Do you have any idea how much shame I feel over that? I’ve always handled my business. I didn’t grow up with four brothers for nothing. I can take care of myself.

Turns out I can’t.

My sons came, too, and saw the situation. They agreed we had to have M involuntarily committed and he was transported to the local hospital – NOT the same one he just left. We were told that when a psychiatrist determines he has “passed” his psych evaluation, he will be released, but so far, that hasn’t happened. I’m working with our behavioral health advocate to TRY to find a placement for him . . . but nothing has miraculously appeared since we went through this same search last week.

Which begs the question – why not? I know early-onset dementia isn’t all that common, but at the same time, it isn’t so rare that there should be nowhere for us to turn. I keep thinking there must be something, somewhere, some resource we haven’t tapped. But where?

I’ve been thinking this morning, as I feel the rock and the hard place squeeze closer and closer in on me. The boys and I have been working to take care of this man we love. I want to honor the love I have for M, my best friend, my love, my partner for the last 37 years. I know the boys want to honor their dad, their hero, the man who witnessed their first breaths. What we haven’t considered, what we haven’t wanted to acknowledge is that that man is gone. The body may still be here, but the heart, the soul, all the things that we love about M are gone. We may see glimpses of them, passing shadows, but I suspect we’re projecting our wishes and hopes onto a blank screen. We’re creating something out of nothing.

Am I suggesting that we just dust off our hands and walk away? Absolutely not. I want M to be cared for, to be safe, to be as comfortable and happy as he can be. But I’m starting to realize that what we want and what that is going to look like for M . . . well, our expectations may be very different from what reality turns out to be. And that makes me very sad. I thought I could mold the reality I wanted for him, and it turns out I can’t.

I’m not Superman. Nor am I God.