The Disease That Stalks My Family
It’s a rapacious predator who has taken far too many of my family. Just in the past 9 months, my two brothers passed, due to this illness. John Jr., at the age of 79, passed last August and Peter, 82, died more recently. John was buried on the Cape one month ago and Pete is buried, today, at West Point (he graduated from the Academy, class of 1963).
People wonder why, at almost 79, I am driven to do the work I choose. Why not merely lounge by a pool or travel extensively in my time remaining? Why choose self-publishing and then marketing (all hard enterprises because I am out here, doing it alone).
Because Alzheimer’s is my Enemy.
My brothers are not the only two…just the most recent. A cousin whose funeral services I attended in Maine a few weeks ago suffered from this cognitive disease the shortest amount of time—one year, while the others endured it multiple years. Another cousin died, having had Early Onset Alzheimer’s. My father was the first in the family (that we know of) to succumb to Alzheimer’s. He had it approximately 6 years which is probably the average. He died in a locked ward of Steere House, adjacent to Rhode Island Hospital, one of the only facilities at the time prepared to deal with those affected with dementia.
And then there’s my husband Paul, diagnosed for over 10 years. Fourteen years ago he was hit on a mountain road in Asheville, NC, which resulted in a broken neck, a 9 hour surgery and then his choking on swelling after surgery. Because of that, he suffered an “anoxic period” when no oxygen went to his brain, causing his lungs and heart to stop. The triage team brought him back with the paddles. That accident’s brain injury probably accelerated his Alzheimer’s.
My book Az and Me: A Partner’s Journey with Alzheimer’s is my answer to this diabolical force. I refuse to sit idly by as it plunders my family and I give people the informational tools needed to prevent their worst scenario.
I was ill-prepared, years ago, in protecting both Paul and me and as a result, I needlessly spent $8,000 on his temporary stay in a nursing facility when I went into the hospital for a few days. I didn’t know the VA would’ve paid for my Respite Care (when the caregiver needs a break).
Then, there’s the financial preparations necessary so a couple’s assets aren’t totally drained in these long-term progressive diseases. And the mental- health-saving techniques—the tips and suggestions I share with Caregivers.
Az and Me: A Partner’s Journey with Alzheimer’s will tell you how to avoid the worst mistakes. In short stories (1-2 pgs each), it spotlights life with one who is cognitively impaired and in poems (mine) I share Paul’s and my journey. Photos round out the mix. Folks like the book because it’s an easy read. What I hear from readers, is: “I finished it in 2 days.” Or “I like it because I could pick it up and not have to remember what I’d read before.” Or “It’s got humor and I like that.”
So do yourself or a friend/relative a favor and get them this book. It’s available on Amazon (click the underlined part and it’ll bring you to the Amazon site) but if you’re uncomfortable ordering there, contact me and I’ll get you the book. I’ll be speaking at various venues throughout Rhode Island as time goes on, trying to give folks the tools to fight this insidious predator. Speaking and book signing dates will be added to this website, so please sign up to get notices. Pease join me in this fight and help me get the word out to as many as possible.
In the meantime, my brothers, both victims of Alzheimer’s—RIP.
Rest in the knowledge you lived successful lives, giving back to legions of folks.
In my own years ahead (if I should be so fortunate), I work to obliterate the damaging effects of a disease that’s expected to impact 50% of American families in the future. I will consider my work an “Homage to My Family”
Below is a pic of my two older brothers and me, atop the famous Roger Williams Park dog.
