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
A little passion goes a long way. I’m not talking about relationships here. I’m talking about life. No one has passion for everything they do. We all have to do things that we don’t like doing. That’s part of living in the real world. But we gotta have passion for something or we’re sunk. My passion is dementia. I don’t like dementia itself. In fact, I … Continue reading Passion in Dementialand (A Post About What Gets Us Excited)
As I’ve said before and so has others, you will never know unless you have this disease. It sucks! Nothing I can say other than that. Those are not my words. They are the words of someone with younger-onset Alzheimer’s. Her name is Melanie and she is in her early 40’s. I read the blogs of many individuals with dementia, but there is something about … Continue reading You Don’t Know Unless You Live in Dementialand
At any given time, there are several blog posts in my “drafts” that I haven’t published. Sometimes they aren’t published because I think they are poorly-written and need some polishing. Once in a while I hold something back because I haven’t quite found the right words to explain what I want to explain. And then there are a few that I haven’t published because they … Continue reading Choices in Dementialand (aka Confessions of a Spoiled Dinner Brat)
Burden. It means hardship, mental weight, or strain. It’s a word caregivers at dementia support groups dance around awkwardly. Caregivers vent. They talk about their lack of privacy or their dearth of support. They discuss their frustrations and challenges. They say they have no time to care for their own health or spend with friends. Every once in while, someone cries. But then it usually … Continue reading The B Word in Dementialand
In late 2008, my husband and I adopted an English mastiff from our local shelter. At the time, he was already a senior citizen at the age of six. Mastiffs only live about seven to nine years, so I feel very fortunate to say Karl is still with us at approximately twelve years of age. We call him Bighead, and if you look at his picture … Continue reading Dementia and Drugs (and Why Bighead Has a Bit More Pep As of Late)
Several years ago, I was sitting with a group of individuals who had recently been diagnosed with Alzheimer’s. I don’t spend a lot of time with people in the early stages of the disease. Many of the people with Alzheimer’s that I talk to are past the point where they are able to tell me what it’s like to have Alzheimer’s. Although I had been … Continue reading Forgetting Your Manners (Among Other Things) in Dementialand
When I was in graduate school, I had a friend who was going through a rough stretch in her relatively new marriage. She told me something that struck me as interesting…and sad. She said that she was sometimes lonely when she was single, but that loneliness did not compare to the loneliness she now felt when her husband was right next to her. Her husband seemed like a stranger to her. Continue reading A Special and Weird Kind of Loneliness in Dementialand
I think I’ve given someone the wrong impression about how I feel about Alzheimer’s and related dementias. Someone the other day said to me, “I think you’re right. We just need to accept that old people get dementia and lose their memories.” Hmmmm….. I took a deep breath. It’s not just about old people and it’s not just about memory loss. Also, I think a … Continue reading Why We Can’t Afford to Accept Dementialand (And What the General Public Hasn’t Yet Figured Out)
There are certain memories that never fail to make me smile. In elementary school, my friend Heather and I spent a lot of time producing radio commercials. We had a tape recorder that was state-of-the-art. We wrote a script. There were sound effects. Heather’s little brother, Brian, played a supporting role. I specifically remember making commercials for vacuum cleaners. We said they “sucked” but in … Continue reading Here’s to Hoping We Lose Bad Memories If We End Up in Dementialand
When Dementia Knocks 
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