I read and hear a lot about what a terrible disease Alzheimer is.
I think we need to work hard at changing this perception for the benefit of the people who have dementia as well as the sanity of those who are their care partners. My personal experience is that while the disease is certainly horrible and tragic, there are moments of great joy and healing to be found in the journey.
I have learned as much as I have lost in the process of navigating the choppy waters of the last decade or so as I have become more acquainted with dementia and people who live with it.
I wrote in another blog post:
“Being doesn’t require remembering, thinking or doing; and recognizing love and compassion doesn’t require recognizing individuals.
It helps that I see people with dementia as engaging, vibrant and fully human beings rather than as lesser versions of themselves or worse, as empty shells.”
Life itself is a death sentence. But we don’t grieve the birth of a new life, we celebrate it. We would all be well served if we started looking at all types of dementia in a different way. I’m not saying dementia is not heart wrenching and soul destroying. It is. But the people who have it are still people, and they’re not dead while they’re still alive.
Advocates such as Kate Swaffer, Rick Phelps, Harry Urban and others who have been diagnosed with dementia are adamant they should not be dismissed because of their diagnosis. On the contrary, they actively contribute to the ongoing conversation about the disease and how they are the ones best positioned to educate the rest of us.
Let’s help people with dementia live the best lives they can until the end instead of whingeing and whining and moaning about how sad we feel about what we perceive, perhaps mistakenly, our collective losses to be. Let’s focus on how we can make life with dementia full, engaging and rewarding no matter which side of the care coin you find yourself on.
End of rant. Or beginning of a bigger rant, depending on what happens…