I try to respect people’s privacy. Within my blog, I change names and identifying details of individuals. And, when possible, I ask for permission to tell stories. Almost without exception, people want their stories told. They are excited about the possibility they have had an insight or experience that others might find interesting or useful. They may not […]
When I was growing up, my parents told me I could be whatever I wanted to be. I could do whatever I wanted to do. They said that the sky was the limit. I should aim high and I could accomplish anything in the entire world. MY PARENTS WERE LIARS. I cannot accomplish anything in […]
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.
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.
I pulled up at a nursing home in an impoverished part of Kansas City. It was 2006–before GPS was commonplace. I had printed out Mapquest directions to find this place. It didn’t help that it was raining, almost 11 pm, and that the nursing home was tucked behind an authentic hole-in-the-wall Mexican restaurant and one of […]
I once got in a tense argument about whether a stuffed cat was a real cat. For the record, it was a stuffed cat but really it was a real cat. About ten years ago, I was visiting with a hospice patient on a weekly basis. Linda-not her real name-had vascular dementia (as well as multiple other […]
I spoke at the Illinois and Iowa Quad City Family Conference on Saturday. We had a great turnout, and even had some press coverage: http://qctimes.com/news/local/caregiver-conference-attracts-its-biggest-crowd-ever/article_ee4294a2-6fb4-5e3e-ba81-64b7666b8288.html (Please note that I hate my press photo and have no idea why it appears that my hair is longer on one side than the other.) After I spoke, a small […]
I sometimes struggle with apathy when making decisions about the big things in life–like my hair. It used to be closer to chin length and now it’s shoulder length. I’ve asked a few friends if they like it better shorter or longer and no one gives me a straight answer. They say things like, “Oh, […]
My husband was at a conference all week, and I had a plan. I was going to paint the kitchen and put up a new light fixture. I sent a text to my friend CJ who lives in Michigan to ask if he thought I was capable of putting up a light fixture. CJ happens […]
Although I used the term “role reversal” in the title, I’ll be really clear in telling you I don’t like it. I hear people say things about how they’ve become a mother to their own mother, or something to that effect. And I get where they are coming from, but caregiving for an older adult […]