Snapshots of Dementia: A Merry Heart

Snapshots of Dementia: A Merry Heart
Thursday, September 24, 2020 by Marti

*Forgetful Jones (Facebook/Sesame Street)*

“A merry heart does good, like medicine, But a broken spirit dries up the bones” (Prov. 17:22, NKJV).

We all have different ideas about dementia; I know I did before we began this journey. And truly, even as transparent as I try to be on my blog, I haven’t yet caught up to present-day except for some occasional glimpses. So this is that!

Anyone who knows Tom, in past or present, knows about his trademark sense of humor. Although he has the typical anosognosia (“without knowledge of disease”) of many people with dementia and doesn’t realize the extent of his deficits, he does now know he has frontotemporal degeneration (FTD), and he does know his thinking has changed. He still jokes, although he’s often using lines he’s said for many years. But sometimes his comebacks surprise me, especially since his thinking seems to have slowed down a great deal in the past few months.

Last spring, while we still lived in Florida, I made a casual joke about something he would “probably forget.” He looked at me very seriously and said, “I think this is something that is OK for me to joke about, but not OK for you.”

Though this may seem like a double standard, I understand exactly what he meant. Many of us women are sensitive about our weight. It might be fine for us to joke about our own chubby tummy or thigh rolls, but we don’t prefer that anyone else do so. And it’s the same with dementia. I’ve been careful ever since to make sure Tom initiates the jokes and/or I only repeat things we’ve said multiple times. As a person created in the image of God, he is and will always be worthy of both respect and love.

That being said, Tom has retained his sense of humor. I think I mentioned our joke about his “good ideas” once before. Somehow it has stayed with him that his ideas aren’t the best (to read more about this, see this post.) And so occasionally he will say to me, “I have a great idea!” knowing it may not be, or describe something silly that happens (like this week, when he failed to put the carafe under the coffeemaker and sent coffee all over the counter, then put the top back on incorrectly so that even more coffee spilled) as a “great idea.” I am thankful that having the privilege to work from home has prevented most of the other sorts of “great ideas” from happening.

Something else he jokes about is taking his medicine. His short-term memory has become so very short that almost every day, I remind him multiple times to take his medicine (vitamins as well as prescriptions) both morning and evening. He may respond that yes, he will take it, but that doesn’t necessarily mean he will without more reminders. And he may say yes, he has taken it, but that doesn’t necessarily mean he has. So on the days he occasionally misses or doesn’t take his morning dose till late morning, he tells me, “See how much money I’m saving us?”

On this, he’s only half-kidding. Always careful with money (except when he was giving it away to online scammers), he is somewhat obsessed with it now, obsessions being another aspect of his disease (this post contains more about obsessive behaviors). The sweet tooth (previously present but enhanced by FTD) that fuels his obsession with the Wendy's Frosty means we often visit their drive-thru lane once or twice a week (and might go more if I weren’t working so much.)** He is very proud that he gets free napkins with these sweet treats and loves to joke (again, half-joking, half not) with me about how much money he is saving us. Napkin, anyone?

When our children were small, Sesame Street had a cowboy character named Forgetful Jones. This Muppet couldn’t seem to remember anything.

Sometime after we moved to South Carolina, Tom began calling himself “Forgetful Jones.” So when he loses his glasses or sunglasses for the fifth time in the space of a few hours, leaves the garage door open all day or doesn’t remember something he just did, he may tell me he’s Forgetful Jones. And I also have the freedom, especially when he calls himself “stupid” or “dumb,” which I absolutely won’t let him get away with, to say, “You’re not stupid. You’re just Forgetful Jones.” Somehow the memory of this loveable character sweetens the problem and lightens what might otherwise be a heavy moment.

And I’m sure that’s why God made humor: to sweeten the problem and lighten the heavy moments. As we endure the heavy moments of COVID-19, don't we appreciate any humor we can find along the way?

Dementia does of course have its sad times, and I’ll write about those as well. But today, we choose the laughter that comes from a merry heart. And I pray we will choose laughter for many more days along the way.

Do you have experiences with humor and dementia? Ours are often in things we say but sometimes in things we do. I’d love to hear about yours, so please feel free to share in the comments below.

**Before you write me about the need for a healthy diet: We are following our doctor as well as FTD experts’ advice and giving him a generally healthy diet with some leeway. He has lost so much in so many areas that it's difficult to think of taking away the enjoyment of favorite foods (the disease has already stolen some of that because of the loss of his sense of smell and thus some tastes.) The damage to his brain is extensive, and even a no-sugar diet is unlikely to restore it short of God’s miraculous intervention. Please don’t hate.

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