Regular readers knew that Dotty was failing because DeMarco wrote about the end of her life as he writes about everything: with unvarnished honesty, deep insight and love.
There are others who have written well about the experience of living with someone with Alzheimer’s disease. But DeMarco did so more consistently than anyone else.
Many other people – families, physicians, other experts, even advocates – refer to those who have Alzheimer’s as being lost to the world and themselves. DeMarco never accepted this. He was sure Dotty remained with him despite entering a different “Alzheimer’s reality.”
Day after day, he endeavored to map his mother’s new “Alzheimer’s world” for readers. Last July, for instance, he wrote about how to communicate with someone who asks the same question over and over again. The key is to enter into that person’s experience, DeMarco suggested.
In his mom’s case, DeMarco realized how disorienting it was for her to not know what day it was. With this insight, a door opened into her mental state and how he might respond to her incessant questions:
“Here is what I started doing. Instead of getting bent out of shape and giving her a completely exasperated response I started doing the opposite. I walked over, put my arm around her, put my head against her head and said – Thursday. Then I give her a little squeeze … Over time, I started doing this more often and in different situations.
Guess what I learned? I learned that I was no longer exasperated, bent out of shape, or stressed out …
Here is the best part. We both started feeling good, instead of BAD.”
One of the things that stands out about DeMarco’s blog is the passion it conveys. You could feel it again Monday when a guest blogger, Pamela Kelley, wrote about an Alzheimer’s Association ad that carried the headline “We’d show an Alzheimer’s survivor here, if there were one.” Underneath was a large blank space.
That infuriated Kelley and DeMarco because both believe that patients live with Alzheimer’s and are not extinguished by this illness. Or, as Kelley says about Dotty:
“She lived a life so completely contrary to the common expectations conjured by the word “Alzheimer’s”. She survived the diagnosis, the dreadful word, and continued to live, to imagine, to love, to sing and enjoy her good fortune…
Though she had a disease, she wasn’t only her disease. She was wonderfully, beautifully, authentically human until she drew her final breath.”
Kelley then makes a larger point – one that DeMarco supports and that anyone who writes about Alzheimer’s would do well to take to heart:
“When they suggest that Alzheimer’s is a black hole from with nothing emerges once touched by its pull, the Alzheimer’s Association fuels an unwarranted stigma that compounds the burdens our loved ones bear. In a way, it encourages the focus to shift from the individual – why bother with them if there’s no hope – to the aggregate need for money for research and drug trials and advocacy groups. This isn’t to suggest that there isn’t a brutal need for funding for research. Obviously, the need should not be denied.
But when your family is touched by Alzheimer’s, your need is much more immediate.
You need to know that you’ll survive the experience of Alzheimer’s – that doors won’t slam shut, that people won’t disappear, that communities won’t exclude you. Fear and hopelessness, like that which is evoked by that ill-considered advertisement, is what slams doors, sends people running and justifies exclusion. It fuels the isolation of those afflicted as well as their caring partners. And that isolation is a tragedy.”
Jane Gross, founder of The New York Times‘ New Old Age blog, wrote about DeMarco earlier this year, highlighting the unusual extent of his devotion to Dotty. Few adult children are willing or able to give as much attention to an ailing parent. But DeMarco’s core insights about Alzheimer’s are relevant to anyone who cares about how families cope with this confusing, emotionally wrenching illness.
A few weeks ago, a new national plan for Alzheimer’s that calls for an extra $100 million in funding was unveiled – an important development. If you’re not already familiar with the plan, you might want to read up on it. As you do, try to keep DeMarco’s voice in your head. What will this plan mean to families trying to make sense of the “Alzheimer’s world” as he did for so many years with Dotty? And what does the allocation of funding under the plan say about our priorities vis à vis this illness?
Editor’s note: This post has been updated to clarify that a post previously attributed to DeMarco was written by a guest blogger.