Being Right, Being Wrong, and Doing Your Best in Dementialand

Melissa would later tell me that she had an anxiety disorder, and she knew how awful her anxiety made her feel. If Edie felt an ounce of that, she told me, then the family needed to stop the weekly salon visits immediately. I have no doubt that Melissa was acting out of genuine concern. Continue reading Being Right, Being Wrong, and Doing Your Best in Dementialand

Why You Shouldn’t Start Statements with “At Least” in Dementialand (And Elsewhere)

It’s true that things can always be worse, but attempting to point out how they could be worse to a person in the midst of crisis is not helpful.

The next time you try to find the right words, make sure those words don’t start with “At least.”

Don’t focus on putting a silver lining on dementia. Maybe they’ll somehow find that silver lining  in the midst of the tsunami, but it’s not for you to put it there.

To support people, you gotta meet them where they are in the moment. And trying to throw a little glitter into the conversation sometimes puts you on a different planet than the one they are currently inhabiting. Continue reading Why You Shouldn’t Start Statements with “At Least” in Dementialand (And Elsewhere)

Knowing Better and Doing Better in Dementialand

I am driving a couple hours to southern Iowa to present at a community center. It’s a drive full of soybean fields, cornfields, and an occasional Casey’s Convenience Store. I’m listening to a Spotify playlist including (embarrassingly) artists such as Flo Rida, Salt-N-Pepa, Tracy Chapman, the Jayhawks, and the Jackson 5. There may or may not be one, and only one, Justin Bieber song. I’m not … Continue reading Knowing Better and Doing Better in Dementialand

Mean Listening Face in Dementialand (or the Importance of Non-Verbal Communication)

I was diagnosed by my husband as having an affliction called Mean Listening Face about four years ago. A college student that I had in class previously was at our house for pizza. She was telling me about how she had recently applied for a few positions at non-profit agencies. She looked at me and stopped in the middle of a sentence. “Oh, is that not a … Continue reading Mean Listening Face in Dementialand (or the Importance of Non-Verbal Communication)

Habits of Sane Caregivers in Dementialand

Sometimes I write for people with dementia. Sometimes I write for people who have no experience in Dementialand. But today…today I am writing for dementia caregivers. And, really, for all caregivers. If you are a caregiver, things can get pretty rough. I can show you research studies on the rates of clinical depression among caregivers. Spoiler alert–they’re astronomical. (They’re high among caregivers and higher among … Continue reading Habits of Sane Caregivers in Dementialand

Why There Are No Superheroes in Dementialand

Tuesday was National Superhero Day. There’s a day for everything, right? Pancake Day, Oyster Day, Star Wars Day. Superhero Day got me thinking in a way that National Frozen Food Day, Johnny Appleseed Day, and Goddess of Fertility Day did not. (However, National Frozen Food Day did make me crave frozen French toast sticks and tater tots.) I’ve been thinking about how I don’t believe in … Continue reading Why There Are No Superheroes in Dementialand

A Bad Day in Dementialand (aka Why I Am Not a Saint)

Any frustration I feel working with people who have dementia does not compare to the frustration of having dementia. Sometimes I have anxiety when I work with people who have dementia…because I worry I’m not handling a situation right or that I’m making things worse. But that anxiety is nothing compared to the anxiety some of my friends with dementia feel. Continue reading A Bad Day in Dementialand (aka Why I Am Not a Saint)

Tequila in Dementialand

A woman had recently been admitted to hospice and her family wanted to go out of town to attend a wedding. The volunteer coordinator asked if I might be able to stay with her for an evening. Bev (not her real name) was a divorcee in her 70’s who had had vascular dementia. She’d experienced several strokes and had been told she was in heart failure. I … Continue reading Tequila in Dementialand

Pain in Dementialand (aka What Kidney Stones Taught Me)

The amount of pain experienced by those in end-stage dementia terrifies me. We know that at the end of life people with dementia receive only a fraction of the pain control medications of that those without dementia receive. Are they in less pain? Nope. We have no reason to think that dementia stops individuals from feeling pain. Dementia eventually stops people from communicating pain and understanding its cause, but research shows that pain-related brain activity is the same in people with and without dementia. Continue reading Pain in Dementialand (aka What Kidney Stones Taught Me)