Friday, February 17, 2017

Other planets

I am not alone in the dementia blogsphere. I’ve discovered an entire solar system of blogs, all of which are written by people with Alzheimer’s or some other form of dementia. How did I learn of this discovery? Since January 2016 I have been serving on a board whose function is to allocate grants designed to help alleviate the suffering of people in the late stages of Alzheimer’s. A colleague of mine on that board who is familiar with my blog alerted me of the Dementia Action Network [daanow.org] and by the time I checked out the site myself, my blog had been added to the list.
The bloggers are a diverse group. Six live in the United States or Canada, and four are in Australia, along with one person in England. Two of the bloggers write about Lewy Body disease, a cousin of early-onset Alzheimer’s disease. Ken Clasper’s blog has a very specific focus. The title is Living well with Mild Cognitive, Bronchiectasis and Osteoarthritis. “Many of us remember being enthralled as kids by the future of robots,” Clasper writes. “But how many of us actually ever thought we’d ever end up with a robotic helper of our 0wn?” Clasper goes on to discuss how technology could help alleviate the shortage of nurses skilled at caring for people in the disease’s later stages.
 Wendy Mitchell, who lives in England, writes the blog “Which me am I today?” Her most recent post focuses on a familiar topic among people in the early stage of the disease—the weakening of short-term memory. “I started this blog to allow me, in the first instance, to write all my thoughts, before they’re lost. Luckily, the part of my brain that allows me to type hasn’t broken and I find that easier than talking. I have calendars that take care of the future but this blog serves as a reminder of what I’ve done and said in the past—it now serves as my memory.” Mitchell’s blog is also visually pleasing. When people visit the blog, they see a gorgeous photo—perhaps the Lake District, where William Wordsworth composed his “Daffodils” poem in 1804? Something else struck me about Mitchell’s blog: She has four public service ads on her site, all related to Alzheimer’s.
The blogs take various forms. Harry Urban’s, “My Thoughts on Dementia” takes the form of a diary, sometimes with more than one  post on the same day. Urban, who was diagnosed with Alzheimer’s back in 2004, poses the basic question: “What’s it like living with Dementia? I get asked this all the time and it is so hard to answer because everyone is different. I try to explain my thoughts so maybe you can begin to understand this disease.”
 Urban continued, “So many of my friends living across the country, whom I love very dearly, are standing on the edge of a very high cliff, looking at the murky ground below and wondering. Your first instinct is to grab them and pull them back, but most times they will return looking for answers.
“I think the better approach is to talk to them and help them understand that they do not belong standing there in the first place, wondering. They believe that no one cares or would miss them, but we do, we just do a poor job of letting them know.
“Offer your hand, not to pull it back, but to stand beside them  and help them work through their problems. There are times that the best thing you can do is not offer advice, but just listen.”
Sage words from a man who appears to have wrestled with Alzheimer’s far longer than most of us.

To check out other blogs written by people with dementia,
go to the website daanow.org/resource-center/resources/#books  and scroll down to “Blogs Written by People Living With Dementia.” My apology on behalf of my blogging software for not being able, at this point, to embed live links in my posts. If anyone can provide advice, I will be grateful. You can reach me at mitch.evich@gmail.com.

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