Week One

Starting out, starting over

Photo by Leilani Angel on Unsplash

I’d planned to make the day as normal as possible: Mike and I would get up, eat breakfast, get dressed and head out the door. But then I’d point our car north, away from the city, rather than south, into the heart of rush hour traffic. I would explain to Mike that we were going to his new school today. Wasn’t it great that the new school was so close to our house? We wouldn’t have to sit in rush hour traffic anymore!

Mike was the person who began referring to his dementia day care program as his school, so that’s the language I used when I started talking about his transfer to residential memory care. I didn’t mention that he’d be living there, rather than coming home at the end of each day; I just kept emphasizing how great the new school was going to be.

He’d have a private room where he could chill out and have quiet time whenever he wanted! And a private bathroom, all to himself! And everybody would come to him—the doctor, the dentist, even me! He could just stay in one place and relax. He’d never have to sit in a traffic again. How great would that be?

I don’t know how much Mike understood about the transition he was about to go through. When things started disappearing from our bedroom—pieces of furniture (the absence of which I tried to hide by temporarily moving new pieces into the big empty spaces), art from the walls—he didn’t comment on those changes. He didn’t even give the empty walls a long look, which I would have treated as the equivalent of words he couldn’t muster up. If he did appear to notice something, I’d decided, I would tell him that I was just moving some things around. That was the truth, albeit a very limited version.

His room at the memory care facility looks almost identical to the bedroom we shared at home. I don’t know whether he understands this, but I hope it’s made him feel more grounded. The staff members I spoke with told me that he’d done amazingly well, for his first week: eating every snack and meal, happily participating in daily activities.

“He’s hilarious,” one of them told me. “We just adore him.”

Which is exactly the same thing people said about Mike at his previous program. The entire staff came out to offer hugs and handshakes and a goodbye card they’d all signed on his final day. Mike didn’t seem to understand that this farewell was different from any other. The rest of us did our best not to tip him off by crying.

If you go looking for advice about how to help your loved one adjust to memory care, you’re going to find yourself wading into a morass of contradictions.

Don’t visit at all for at least two weeks, or a month if you can stand it. Give your loved one a chance to adjust to their new environment.

Visit as often as possible for the first two weeks, so your loved one doesn’t feel lost and abandoned. Assure them that they’re safe and you’re still taking care of them, even if they aren’t seeing you every day.

I asked the facility director for her opinion, in the face of this discrepancy. She just shrugged, then looked at the wellness coordinator sitting beside her—who also shrugged.

“Every person is different,” the director said, finally. “When I placed my mom in memory care, I was there to visit all the time. So I’m definitely not the right person to ask about the benefit of giving people space.”

The wellness coordinator shrugged again. “Some people have family members here every day,” she said. “Some people only have visitors once a week or once a month. Some people don’t have any family in the area who can check on them—that’s why they’re here.”

“The important thing is, we’re never going to tell you that you can’t see your loved one,” the director assured me. “But we’ll definitely let you know if Mike seems more agitated after a visit, instead of being comforted by it. And then you can decide how you want to adust from there.”

Under normal circumstances, the lack of a clear answer to any question makes me crazy. But I found it comforting to realize that there was no right way to get through this: people are different, families are different (to say nothing of the various types of dementia, which can present in ways that look very different.)

So I nodded and told them that, for at least the first couple of weeks, my plan was to visit every other day. “I don’t want him to feel like his family has disappeared,” I said. “But I also want to give him the space to figure out how to adjust.”

“And give yourself that space,” the director added. “You’re finding your own way forward, too.”

You would think I’d feel worse after hearing someone point out that Mike and I are headed in different directions, but I didn’t. It actually made me feel better that, finally, someone was saying the quiet part out loud. I’d been walking around the truth for weeks, minimizing the impact of this change. I’d been doing my best to communicate that everything was going to be so much better for Mike after his move.

I hadn’t been allowing myself the time to think about how difficult those same days might be for me.

That first day, I confess, was rough. I spent most of it watching the clock, waiting until I could go back to the facility and check on Mike again: in an effort to maintain the appearance of a normal day, I’d decided to show up around 3:30. That had been Mike’s usual pick-up time for the past 18 months, I reasoned, so he’d be expecting to see me in the late afternoon.

But he was in the middle of a “This Day in History” activity when I arrived, so I actually didn’t stay long. The old Mike was a history buff; I hoped there was some part of his brain that still found it possible to connect with the discussion going on around him. He said “Hey!” when he saw me, then turned away and went right back to what he’d been doing. I gave him a one-armed side hug and a kiss on the head, then left the room.

The staff on duty assured me that he’d had a good day. So I let myself into his apartment, put up the new shower curtain I’d purchased for him, and left again.

After that, I went to the grocery store and tried to figure out how to shop for one person. I haven’t cooked for only myself since I was 24 years old; it’s definitely going to take some time to re-learn that skill. I wound up buying $80 worth of frozen dinners and an assortment of snacks, mostly because I gave myself permission to buy whatever looked appealing on one of the hardest days of my life.

That’s not sustainable, of course, but I’ll figure it out. I just have to give myself enough space to move forward.