This Thanksgiving left me feeling like we had harmed a family member. I have since been meditating on ethical dilemmas associated with Alzheimer’s Disease.
Linda, my grandfather’s girlfriend, lives in an Alzheimer’s care facility. Every so often, my grandfather, now 91, drives to the facility and takes her out to dinner and a movie. And once a year Linda joins our family of 13 during the Thanksgiving weekend.
Well, the Thanksgiving visit all started out wonderfully. Gramps and Linda greeted each other like long-lost lovers. They hugged and kissed and held hands. But as the minutes and hours progressed, it became clear that Linda was out of her element. She needed supervision that my grandfather couldn’t provide. And she didn’t know or recognize the rest of us. So at dinnertime, surrounded by strangers, she looked scared out of her mind.
Afterwards, some in the family discussed how sad it was to see evidence of the progression of Linda’s disease. Others, like me, theorized that her fear may have been related to unfamiliar environments, people, and the scary-ness of crowds. (As a sociologist, I get annoyed when everything is blamed on the brain, and other factors are ignored.) Even Gramps proclaimed, “I don’t think we should bring Linda to the house anymore.”
Most of us agreed that we had an ethical dilemma on our hands.
It is unclear how much Alzheimer’s really had to do with the Thanksgiving situation. We don’t know enough about the experience of the disease. Sociologist Renee Beard, who has interviewed individuals with the disease, has argued that many with Alzheimer’s actively manage their disability. I wish I had been able to talk with Linda about how she felt about all of this.
But the sheer look of fear reminded me of recent articles on hospitalization-induced disorientation and delirium. Take a vulnerable, impressionable human being out of his/her element, and things get confusingly freaky. I saw this with Gramps when he was hospitalized for a quick procedure (and confused for at least a week afterwards). I see this with my four-year-old when we get off routine. The difference is, some of us can grow and learn from these disorienting moments, and maybe it will make us stronger. I’m just not sure that’s the case with Linda.
So, Gramps will continue his dates with Linda. And we can try and visit with her one-on-one. But we’ll avoid the group scene in the future. Maybe including her in our family traditions was more about making US feel good, anyways.
What are your favorite books on Alzheimer’s Disease and family tradition? On my list: Buffalo Lockjaw, by Greg Ames, and Still Alice, by Lisa Genova.