Love and intimacy are vitally important to everyone, including people with dementia. One of the cruelest aspects of this disease is that it makes intimacy and loving relationships nearly impossible. Even if the affected person is still able to remember his or her closest family members, the possibility of forming new relationships is almost completely denied to them by their loss of short-term memory. How can a person make a friend if she doesn’t remember the other person’s name or even that they met before?
A memory care unit in an assisted living facility is a small, closed place. Residents spend their entire day within it. The unit my mother is in has a central area with a living room and two separate dining and activity areas. The residents’ apartments are arrayed around this area. This is where they live: eat, play games, and socialize. There’s also a small enclosed garden area for the nice weather. With somewhere between twenty and thirty residents, people have a lot of contact with each other. Yet I don’t believe I’ve ever heard any resident call another by name.
There are what pass for groups, or pairs. We often see the same people talking together or having supper at the same table. But the conversations are quite limited and often seem to consist of repeated comments.
But the human heart still needs to connect.
Marie and Raymond
After my mother first moved in to the MCU, I visited her nearly every day, and I became aware of a man and a woman resident who appeared to be a “couple.” Marie and Raymond were in the early stages of dementia. They could speak well and hold conversations. They intrigued me. At first I wondered if they were married, and if so, whether they had a room together in the MCU. Then I heard Raymond refer to her as “my future wife.” I thought this was enchanting. Would there really be a wedding? They were inseparable. They sat on the couch together, at the supper table together. They would walk in the garden, go on group outings together. Sometimes you would surprise them embracing in another room or in the hallway. She called him “darling.”
Then one day I noticed that Raymond wasn’t there. Days passed and he didn’t return. I asked a CNA, and she said he’d moved to another place. We had a speaking acquaintance, so when I saw Marie in the garden, I asked about him; she said, “Yes, that was a blow. I thought we had something going, but I guess not.” I felt bad for her, and wondered whether maybe Raymond’s family hadn’t approved of their relationship.
Shortly afterward, though, Marie struck up a “friendship” with another man there. That is, she began “hanging around” him, sitting with him, laying her head on his shoulder as they sat on the couch. Yet he remained much less responsive than Raymond had been--and less aware of what was going on. He seemed only to tolerate her. One day I greeted her while she was sitting with this man, and she said to me, “Have you met my husband?”
So what did it mean? I found myself rethinking the relationship she and Raymond had had and wondering just how real it had been. Had they really known each other in the way real friends and intimate partners did? Had they been able to share parts of their lives with each other? Or had it just been an attraction that was forgotten once they were separated? Probably it doesn’t really matter--they had had each other for a while, had maybe the only form of intimacy that they were capable of, and maybe it was enough for them. I hope so.
Agnes and Bob
They actually are a married couple. Both have fairly severe dementia, are nearly nonverbal, and seem largely unaware of their surroundings. But they have an instinctive feel for each other. Bob knows when Agnes isn't near him and gets upset.
I didn’t know they were married for a long time. They don’t share a room, and for quite a while they didn’t even sit at the same table for meals. Why this was I don’t know. But one day walking by their rooms I noticed that they had the same last name, and that was the only clue I’d gotten. Then I remembered that they always sat side by side on one of the couches. And at Thanksgiving their two daughters came into the unit. It hits me hard to try to imagine how it must be for their children: to have both your parents suffering from dementia at the same time. The sense of loss I feel is doubled in their case.
One day a number of people came to visit them; the group was leaving shortly after my husband and I arrived, and we noticed they had instruments. Someone mentioned how much fun they had singing. Bob has a beautiful voice; maybe he once sang in a choir or even professionally. Perhaps Agnes did, too. And in some way they were still able to share that with their family.
Minnie is another resident with fairly advanced dementia. She doesn’t speak more than a few words every now and then. But she has her own little family of baby dolls. She used to carry only one, but the number has expanded, and last week she had an armful of four. She sits with them in a chair, holding, rocking, kissing them. She brings one or two to the dinner table. She tries to feed them. The CNAs have learned to gently take them from her so that she won’t be too distracted to eat. “The baby needs to eat, too,” they’ll say. “I’m going to take her and feed her.” That makes Minnie happy. She has found her own way to love in the MCU.