Family Ties in Dementialand

A friend who works in the health care field sent me a text to tell me that she was reading my blog. She mentioned having experience with a patient who had dementia, but that the woman always showed up at her appointments with a neighbor. Her family wasn’t around–or at least wasn’t interested in her care. My friend was sad that the woman’s family wasn’t there for her.

I sent a text back, telling my friend that the neighbor was this woman’s family.

It’s been a common theme over the past several years in both my personal and professional life.

Family is related to you by blood. Family is created by legal ties. And then there’s family that doesn’t fit into either of the previous categories. But when you need something, they’re around just the same.

I gave a community presentation on dementia caregiving about a year ago. Two middle-aged women came up after the presentation to ask a few questions: What if she’s not sleeping? Is it normal that she’s losing weight? Why does she have so much trouble keeping her balance? How do we get her to move into a facility when she doesn’t want to?

I made the assumption that the two women were partners and that the woman they were asking about was one of their mothers. As it turns out, I was half right.

They were partners, but the woman with dementia wasn’t one of their mothers. Or grandmothers. Or aunts. Or siblings. She was a woman who lived a few blocks down the street.

“How did you come to be a caregiver for a woman who lives a few blocks down?” I asked them.

They explained. This woman had been welcoming when they moved to the neighborhood twenty years ago. Not everyone in the neighborhood was so welcoming to a lesbian couple in the 1990’s. When they started noticing she needed a little extra help, they stepped in. They mentioned that she didn’t seem to have much family.

“But she does have family,” I said. “She has you guys.”

Anthropologists and family scientists call this “fictive kin”–family that is not defined by blood or legal ties. I actually don’t like this term because it makes me think of “fiction,” and there’s nothing fictional about fictive kin.

My students and I talk about family in the courses I teach. I ask them who their family is and what makes them family. We come up with a variety of definitions–not necessarily right or wrong, but maybe a little different for everyone.

One of my students came up with a definition that I can relate to. She said that the first few people you have to text when you get really good or really bad news are your family. Many of my students nodded knowingly.

To be fair, maybe it’s not texting for you. Maybe it’s calling them or stopping by their house. But those people who you can’t wait to share good news with? Those people who support you through tough times even when you don’t ask them to? I’m not sure I can think of a better definition of family.

Sure, I see people with dementia who have little support. But most of them are loved. Some are loved by people who are related to them by blood or legal ties. Some are loved by people who aren’t related to them. And the really lucky ones are loved by both.

About ten years ago, I got to know a hospice patient that I’ll call Lydia. She had Alzheimer’s and end-stage cancer. She was staying at a hospice house, and I visited her a couple times each week. I really didn’t know a lot about Lydia. She had a son, but I knew they weren’t close, and her husband had passed away decades earlier.

One day hospice social worker called me to let me know Lydia’s time was quite limited. I stopped at the hospice house knowing it would likely be the last time I’d get to see her.

As I walked into her room, I was met by Lydia’s lifelong friend Ellen, Ellen’s husband, and Ellen’s niece. Lydia had mentioned Ellen before, and I was excited to meet her. The three of them were sitting around Lydia’s bed, talking about fun times together, and doing a lot of laughing. Lydia wasn’t responsive, but I told them I certainly wouldn’t doubt that she could hear them. Ellen and her niece were drinking wine, which they joked about smuggling into the hospice house (although I’m guessing they probably did ask the staff for permission).

The hospice pastor stopped by. He asked if we’d like to say a prayer. Before he started praying, he asked, “Will her family be coming to say goodbye? Should we wait for them?”

Ellen looked at the pastor, somewhat annoyed, and responded, “Her family is here.” He proceeded with the prayer.

Blood makes you related, but shared DNA can’t make you family. Recounting someone’s life at their bedside while drinking wine at the hospice house? That makes you family in my book.