Dementia’s progress isn’t linear nor is it predictable. People living with dementia don’t start forgetting people in the order of “not significant in my life” to “has always been my favorite although I’d never admit it.” People with dementia don’t forget loved ones because they are mad at them. REPEAT THAT TO YOURSELF. Continue reading The Forgetting and the Remembering and the Forgetting
I was on a zoom call with our state’s most passionate and educated dementia advocates. And I heard it. Behavioral problems. Some nursing homes don’t let in people with dementia because they are behavioral problems. I cringed, and I pointed out that we should change our language. And then the meeting continued. I wondered if my point had registered. Probably not, but I’ll keep making … Continue reading “Behavioral Problems” Are Symptoms (AKA Why You Shouldn’t Use the Term “Behavioral Problems”)
Caregiving is hard. You are not stressed because you need a nightly bubble bath and a yoga class. You are stressed because caregiving is hard. Continue reading Caregiving is Hard Because It’s Hard
Here I am. After a hiatus, I finally sat down and decided it was time to write. Why did I stop? In short, I needed a break. I needed to take something off my plate. I had a few people attack me on Facebook messenger and was just over it. Not even angry. Just over it. Throw in three back surgeries in 2021, the death … Continue reading Hello, I am here.
Do you ever wonder if you did the right thing? I woke up in Memphis at a Hilton this morning. I had to catch a flight back to Iowa. The hotel employees told me that my best bet for getting a ride to the airport was to contact a guy called Mr. Jay—since Uber and Lyft have stopped operating in Memphis (and no, I don’t … Continue reading Mr. Jay and the Bad Driver
Why is my loved one with dementia so tired? Because dementia is exhausting. We talk about kidney failure. Heart failure. Lung failure. Although it sounds harsh, dementia is brain failure. As the brain becomes more compromised, it takes more and more energy for someone with dementia to complete tasks. I don’t mean tasks like renovating a room, fixing a car, or making a 12 course … Continue reading Why Is My Loved One with Dementia So Tired?
The other day my husband and I had a conversation about women who pack their husbands’ suitcases. To each their own, but my husband agreed that he’d never let me (or anyone else, for that matter) pack his suitcase. He thinks I’d forget something. And I probably would. This conversation reminded me of a story that a man, Don, told me a few years ago. … Continue reading Dementia, Love, and Suitcases
I know a guy who says he will kill himself if he gets dementia. His dad had it. His mom had it. He says that he refuses to put his family through that. If he starts to have dementia symptoms, he’ll end it. He knows what end-stage dementia looks like. He knows the pain of having parents who don’t recognize you. He knows how much … Continue reading Dementia and the Suicide Plan
Last week I asked those of you with a loved one in a nursing home during the pandemic to respond to a few questions. And you did (thank you!). I planned to write up a summary or assign meaning to your responses. I thought maybe I’d find some themes as I read through them. Then I realized that this is about you–not about me. I … Continue reading Families, Nursing Homes, and Pandemics: In Your Words
Hey all! I have a request today…I am working on some blog posts about the experiences of loved ones and caregivers during the COVID-19 pandemic. If you have experiences you’d like to share, I want to you hear you. Please click on the following link to help me learn about your lived experiences: https://www.surveymonkey.com/r/COVID_19_nursing_home_exp Here’s the thing—-No one taught me about the experiences of caregiving … Continue reading Sharing Lived Experiences About Nursing Homes During the Pandemic