A Special and Weird Kind of Loneliness in Dementialand

When I was in graduate school, I had a friend who was going through a rough stretch in her relatively new marriage. She told me something that struck me as interesting…and sad. She said that she was sometimes lonely when she was single, but that loneliness did not compare to the loneliness she now felt when her husband was right next to her. Her husband seemed like a stranger to her.

Shortly after talking to this friend, I came across the following quote:

It’s a lonely feeling when someone you care about becomes a stranger. —Lemony Snicket

I remember sharing it with that same friend after she had decided to file for divorce. And, for several years, I thought that quote was about falling out of love. I thought it was about thinking you knew someone and realizing they weren’t the person you thought they were…or maybe that they were but they changed…or you changed.

I was single at the time. This quote stuck with me. I vowed to never end up in a relationship that made me feel more lonely than I felt as a single person. I didn’t want to marry someone who would make me feel alone even though they were sitting right next to me on the couch. And I didn’t.

That’s what I thought that quote was about.

But recently I’ve used the same quote in a different way. And it makes me just as sad.

Dementia makes people lonely for the people right next to them. A woman once told me that she missed her husband even though she was sitting beside him. She cared for him 24/7 in her home. She was rarely not in the same room with him. She asked me how she could be so lonely when she was never alone.

She told me that she loved her husband for 30 years, and she loved the man who lived with her now, but that wasn’t her husband. He didn’t know who she was. He was often aggressive and destructive. She managed to love and take care of him, but it wasn’t her husband. She missed her husband. The hardest part, she told me, was looking at this guy who resembled her husband.

“I didn’t know I’d miss him this much when he was still living,” she said. “Now that’s a special and weird kind of loneliness when your husband doesn’t know who you are.”

A special and weird kind of loneliness? I couldn’t argue with her terminology, but in my field it’s actually called ambiguous loss–someone is psychologically absent but physically present. People in the early stages of dementia can very much be psychologically present in relationships. However, as dementia progresses, relationships change. We must modify our expectations and our perspective. And there is loss…

There’s no way around it. My former neighbor told me once she missed her husband’s conversation skills as his Alzheimer’s progressed. She told me she had always appreciated how he could argue with anyone and then charm his way back into their good graces. She missed that. She still had his smile and his hugs, but she was grieving all the great conversations she had. She was lonely. He was right here, and she was lonely.

It’s not just spouses that go through this. Parents with dementia might not be able to give advice like they used to. Dementia may keep grandparents from being there for us in the ways that they used to be there for us. When we can’t depend on people like we used to be able to, we feel lonely. We feel lonely for people we can see and touch.

A few years ago, I went to the funeral of a man who passed away from Alzheimer’s. His wife was standing up by the casket, dutifully greeting a long line of family and friends. I overheard an interaction that I have not forgotten.

Someone gave the wife a hug and said, “I know you’re going to miss him so much.”

The wife smiled and said, “Oh, it’s okay. I’ve been missing him for years now.”

It was one of the more awkward funeral interactions I’ve experienced.

There’s a lot of love in Dementialand. I see a lot of laughter, hope, and joy. There are families living in Dementialand who make the most of every moment and opportunity. Yet there’s so much loneliness.

And there’s no loneliness like the loneliness that occurs when you’re looking right at the person for which you are lonely. That’s what dementia does.

6 thoughts on “A Special and Weird Kind of Loneliness in Dementialand

  1. This touched me in so many ways. I will share it with my caregiver support group this week.


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