Snapshots of Dementia: Love, Actually

Snapshots of Dementia: Love, Actually
Monday, February 14, 2022 by Marti

One of my favorite dementia care experts (from whom I’ve learned a lot in the past year) has a particular saying for and about those living with dementia: “I am who I was, but I’m different.”

I shared this thought with a dear friend last night as I tried to explain the changes in Tom: He’s still who he was, but he's different.

And on this Valentine's Day evening, as I sit typing away while my beloved naps on the couch, I realize the concept also holds true about loving someone living with dementia.

Back in the day (we met in 1980 and married in 1983), love meant praying together morning and night. Taking time for dates. Sitting on the same side of the table at a restaurant. Kissing after we prayed before meals. Choosing that oh-so-right greeting card. Special gifts (not too often or too extravagant, but always heartfelt.) Making big decisions only as a partnership. Discussing our faith and our children and our lives. And of course, so much more.

Today, love looks much simpler. We still pray together at morning and night, but sometimes his thoughts fail to connect. We still have dates, but I plan them all. We still sit on the same side of the table at a restaurant, but only if I remind him. And we still kiss after we pray before meals—but he’s starting to forget that sometimes too.

I don’t receive greeting cards or gifts from him anymore unless one of our children helps him find them. I make all the decisions, big and small, and usually don’t mention them to him. He either won’t understand, won’t remember, or both. We still discuss lots of things, but the conversations are much shorter and, of necessity, simpler.

Scripture says, “When I became a man, I gave up childish ways" (1 Cor. 13:11b, ESV). Yet Tom is in a stage where he’s embracing childish ways more and more. While I'm working, he’s playing games on his iPad, watching TV, or reading books (he still enjoys reading, although he loses interest easily and can rarely describe the plot). When I’m not working, he still does those things unless I force some sort of needed change. He loves routine, and moving him out of it can upset him.

His tastes in food have also gone back to the basic things he loved as a child: carbs. Sweets. Fast food (please don't send me notes about nutrition; his doctors have agreed that in his situation, comfort food is just that: a comfort. And I do give him a basic healthy diet.) Whether I take him for a simple outing like a visit to Wendy’s or spend time with him watching one of his favorite shows, he will often tell me it’s “the best day ever.” I agree, smiling.

I have a lot of those days now—smiling on the outside, heart breaking on the inside. Because the man I have loved and built a life with for so many years is fading away in front of me: repeating his favorite stories to anyone who will listen, forgetting to turn off almost every light he turns on or close almost any door he’s opened. Yes, his short-term memory is that short. And no, none of these changes (or any of the others) means I love him any the less.

Love, actually, is still very much present. It just looks different now.