Anticipatory grief. I first learned the term when I was in graduate school. I threw it around a lot when I was volunteering for hospice. Now that I work with families impacted with dementia I apply the term frequently. It could be described as the emotional response to the pending death of a loved one–but I know people who have a loved one with dementia … Continue reading Anticipatory Grief and Dementia
I had planned a presentation that broke college students could not be bribed into attending. I mean, college students love pizza. And not even the power of free pizza could get them to show up to listen to my presentation. Wrap your brain around that. Continue reading Dementialand and Nursing Homes and Dying OH MY! (A.K.A. When Your Presentation is Postponed Due to Lack of Interest)
But they’re scared. They understand Alzheimer’s is a fatal disease. They’ve watched the Glen Campbell documentary. They’ve scoured the Alzheimer’s Association website. They want to know everything they can to be as prepared as possible for the journey ahead. In many ways, they are the type of family that I appreciate working with–they actively seek out information to assist their loved one now and in the future.
Yet, there’s a point at which people can become too fixated on the diagnosis. There’s a point where education and preparation morph into worry and anxiety.
“All I think about all day is my mom,” the woman tells me. “I think about what her future holds and when she’ll be in a wheelchair. When I close my eyes, I picture her in a smelly nursing home being taken care of by people who don’t even know her.” Continue reading Living in the Moment and Planning Ahead in Dementialand
When I first started writing this blog about 16 months ago, the only feedback I received was positive. Overwhelmingly and sometimes ridiculously positive. I repeatedly heard that it was smart, insightful, funny, and poignant. At that point, my readership included only my mother, my husband, and about four friends. None of them had a negative word to say unless it was to point out a … Continue reading The Critical Emails I Get in Dementialand (and How I Came to Be Okay With Them)
Several months ago I wrote a blog post about why I dislike the movie, The Notebook. In short, I take issue with how it presents Alzheimer’s. On an unrelated note, I think it promotes stalking as romance. You can read all about it here: https://welcometodementialand.wordpress.com/2015/03/09/my-least-favorite-dementialand-movie/ I had no idea the Facebook messages and emails I would get after this post. Sure, some people agreed with me. Other people sent … Continue reading Following Up in Dementialand
I was 23 when my grandpa passed away. He had a lot of chronic health conditions, including diabetes, and he’d recently had a leg amputated. The last time I saw him in person, he kept calling the guy I was dating at the time “Steve” (although his name was not Steve) and he was very grateful to “Steve” for helping him figure out the remote control … Continue reading Praying for the End 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
I met a woman at an event who told me that when she was diagnosed with Alzheimer’s she was given one and only one piece of advice from her doctor. It was that she shouldn’t let anyone put in a feeding tube when she reached the end-stage of the disease. REALLY?!?!? I am generally not a fan of feeding tubes in most case of end-stage Alzheimer’s, but that’s irrelevant. … Continue reading The Good Life in Dementialand
I gave a presentation for dementia family caregivers at a memory care community last fall. A middle-aged woman in the front row did not seem impressed with me at all. She almost scowled at me when we did make eye contact, but for most of my presentation she stared at the wall above my head. I wondered if I had said something to offend her. … Continue reading But When Are You Supposed to Grieve 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