It was like losing her twice… I’d rather die than have Alzheimer’s…

Today is one of those days when I feel cranky about the way people talk about dementia, and in particular, Alzheimer’s Disease. I might not develop dementia, but then again I might. I probably won’t develop Alzheimer’s, but there is a possibility. I struggle each day to live my life to its fullest, and to do whatever I can to avoid any further cognitive decline. It doesn’t help my morale to hear friends talk about people who have dementia as if they’re children, or as if they may as well be dead. This quote from On Pluto: Inside the Mind of Alzheimer’s by Greg O’Brien sums up a lot of my feelings:

We’re all terrified of Alzheimer’s. The fortress of fear, shame, stigma, alienation, and isolation that surrounds Alzheimer’s today is not unlike what we saw with cancer 40 to 50 years ago. We didn’t even say the word “cancer.” Instead we called it “the big C” in hushed voices. But something changed. We began talking openly about cancer. We began wearing looped ribbons and walking to raise awareness and money, and as communities, we began rallying around our neighbors with cancer, offering dinners and carpools and support. We acknowledged the human experience of living with cancer. And now we have treatments for cancer. We have cancer survivors. Right now, we have no Alzheimer’s survivors. We need to find the courage to talk about Alzheimer’s, to acknowledge not just the end of this disease, but also the beginning and the middle. We need to change the image of this disease, which tends to depict only an elderly person in end stage, “an empty shell,” someone dying from Alzheimer’s. Someone who is, perhaps, easier to ignore. This image excludes the millions of people LIVING with Alzheimer’s, people newly diagnosed in their 40s, 50s, 60s, and 70s; people living somewhere in the beginning and the middle.

Dementia is scary, because we might never get cancer, but we will all, if we live long enough, lose some cognitive function. Life is still sweet for me, even when I can’t find my phone, or even when I can’t remember what my husband said to me this morning. I love my family and friends. I enjoy spending time with them, even when I don’t remember every moment of our time together. I know that people with dementia aren’t “gone” or as good as dead. Here’s another quote from Greg O’Brien:

In laymen’s terms, the “right side” of my brain—the creative, sweet spot—is intact, for the most part, although the writing and communication process now takes exponentially longer. The left side, the area of the brain reserved for executive functions, judgment, balance, continence, short-term memory, financial analysis, and recognition of friends and colleagues, is at times, in a free fall.

There’s still quite a lot of life left in people who are said to be “suffering with dementia.” They aren’t all suffering; they’re living with dementia. People with dementia still feel love. They are creative and appreciative of beautiful things, and kind moments. It saddens me that people are so afraid of dementia. Dementia can be seen more as a change in perception than a loss of self. The people I know with dementia are still themselves, but they experience the world differently. I’m different than I was before, but I’m still me. I wish people would talk about dementia in a kinder way, but I have no control over what other people say. The only thing I can do is decide to take things less personally, so today I’ll do my best to be tolerant and loving.

Photo by Edu Carvalho on

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