A year into the COVID-19 pandemic, life in some ways is still a cross between “Groundhog Day” and “The Shining,”and a fleck of “Alice in Wonderland” where “nothing would be what it is because everything would be what it isn’t.”
While some relief has arrived in the form of COVID-19 vaccinations, seeking the so-called “herd immunity,” finding a balance between conservative and liberal narratives, continues to be a moving target. Given growing concerns about COVID-19 variants worldwide, many are now saying we need a Marshall Plan for global vaccinations.
I’ve never been a fear monger, but my late mother always told me to stay on task. So a year into the pandemic and its related closures and disruptions, the task is to look backwards and forwards without getting dizzy. Bring on the Dramamine…
No easy task, particularly for those, like me, in the throes of Alzheimer’s and other forms of dementia. My Mom and several close family members, lost to the cause, know the path well.
Looking back on a year, what have we learned, what do we know?
For those with Alzheimer’s/dementia the COVID-19 journey is exponentially confusing and filled with paranoia. While we will beat COVID-19 at some point and the next epidemic, Alzheimer’s, for the moment, is still a crap shoot in spite of encouraging advances—a “Rocky" prizefight.
Consider the penetrating collateral isolation, the anxiety, rage, the suicidal depression of COVID-19. Put all that on steroids, and now you may have a better sense of what’s it’s like to live with dementia, a taste of what it’s like to be inside the mind of Alzheimer’s.
Not to take a sliver away from the horrific ruin of the coronavirus, but nearly 50 million worldwide suffer from Alzheimer’s or a related form of dementia; millions and millions have died, millions of millions more to come. The costs are staggering; the cure, without greater infusions of resources, is fleeting. Care costs annually in the United States alone are estimated at more than $350 billion, and more than 11 million U.S. caregivers provide an estimated 15.3 billion hours of informal, unpaid assistance, a contribution valued at close to $257 billion annually.
A recent UsAgainstAlzheimer's A-LIST® survey reveals that the coronavirus pandemic and related closures over the past year led to declines in those living with Alzheimer’s disease, disrupting daily routines, and caused severe and chronic stress on caregivers left isolated without relief or support.
Given the Alice in Wonderland analogy, the isolation and confusion over COVID-19 for those on the dementia train stretches the imagination of Walt Disney. For example, when I had my first COVID-19 test, I anxiously awaited the result online. Finally, the verdict was rendered: “Negative!
Yikes, I dropped an F-bomb in front of my wife, Mary Catherine. “I’m negative, that’s bad!” I screamed, in a cognitive disconnect.
“No, no!” my wife replied. “Negative is good, positive is bad!”
“When did they change the English language; the nuns taught me otherwise?” I said, still somewhat confused.
And so it is for those on the dementia train, the yin and yang of muddle where “nothing would be what it is because everything would be what it isn’t.”
Thus, I am so thankful to be under the tent as a board member of UsAgainstAlzhemier’s, which is shining a floodlight on COVID-19 and on Alzheimer’s, which continues to have significant impacts on me and others on this journey, with continued breakdowns of mind and body.
On a personal note, COVID-19 for me, and concern about all the deaths from this horrid pandemic, has distracted from my own pity party about my progressive short-term memory loss, loss of self, rage, black hole depression, prostate cancer, Macular Degeneration diagnosis, hallucinations, incontinence, spinal stenosis, and now a growth on my spinal cord that will likely lead to spinal surgery soon.
Perhaps that’s a blessing of sorts. And there have been beautiful moments, too. My son, Conor, recently took me to the supermarket on the Outer Cape Cod. I had my list from my wife, and dutifully dropped groceries into the cart, keeping a close eye on my cart, as Conor had his own cart in other aisles. When I got to the checkout counter, a nice man from genteel Chatham on the Cape, approached me: “I think you took my cart, and put some of your groceries in my cart.”
I looked at the counter and didn’t recognize half of items on the counter. Hardly any.
“It’s ok, here’s your cart,” the man said in reassurance.
“I feel so horrible,” I said.
“No…I understand. I know who you are, and I’m on your team,” he replied.
Manly hugs follow. I hate clichés, but it takes a village.
My friend, Lisa Genova, author of the new book, Remember, recently asked me, “So, what did you do to piss God off?”
I paused for a second, then said, “Remember Job in the Old Testament? He was redeemed and restored.”
So my prayer – for all those in this COVID-19 pandemic and in the throes of Alzheimer’s – is that we all will be redeemed and restored.
Keep the faith!
Greg O’Brien, a career journalist, is a member of the board of UsAgainstAlzheimer’s. He is author of the international award-winning On Pluto: Inside the Mind of Alzheimer’s.