AndrewImagine discovering you have signed up for a multi-year journey you never expected to take and didn’t want to go on. Then you look at the itinerary and you also find out you’re in charge of all the details, including how to pay for it, and will be the tour guide, though you’ve never done this before. And then you’re sent on your way.
This is the journey thousands of Vermonters are taking right now, as caretakers or guardians of a spouse, partner, or family member with dementia.
For two and a half years, as legal guardian for my ex-wife Naomi Flanders, I have been learning firsthand what is involved when someone gets dementia.
It has been an eye-opening experience on what this terrible disease does to those who suffer from it. How it affects friends and family dealing with it is less visible but no less wrenching: equal parts slow-rolling train wreck, emotional roller-coaster, and intense lesson plan about grace, sorrow, humility, and life’s fragility.
For Naomi, closure came with a peaceful passing in late February. For myself, the processing of it all continues. While the journey remains fresh in all its twists and turns, as a journalist it seemed appropriate to put into words for everyone the impacts this hidden epidemic, as I came to call it, is having on our state.
If this is a numbers game, we are losers in a demographic doom loop. An estimated 12,800 Vermonters aged 65 or older are struggling with Alzheimer’s, according to the Vermont Alzheimer’s Association in Williston.
That number may sound small — roughly 2% of Vermont’s 648,000 residents — but we are among the leading states for an older population. (Maine is first at 21.8%, Vermont fourth at 20.9%, according to the Population Reference Bureau website.) In numbers, that is about 129,000 Vermonters older than 65, and in impact, that means the number of dementia patients will grow as more Boomers age.
The first thing that struck me entering this journey is the shock of finding that almost everyone I encountered had dealt with or knew someone with dementia among family or friends.
Staffers in probate court. Nurses and doctors. My friends, the counselors and caretaking aides, neighbors, even a pickle-
ball partner and my piano tuner. You are not alone, though at times being a caretaker is the loneliest of journeys.
Vermont, and the U.S., is woefully unprepared for this wave of dementia patients, from a shortage of neurologists and geriatric physicians, to memory care and nursing homes.
The costs locally for memory care are astounding, $7,000 or more a month, and not enough facilities are available to provide it for those who can afford it. As for facilities that take Medicaid patients, they are few and far between, and the process of verifying eligibility makes wandering lost in the desert seem hopeful.
Financial costs, whether in a facility or in lost wages, are matched by the emotional costs and stress involved. There is no crash course in learning how to be an aide, a counselor, and a legal and financial expert, and there is no syllabus for being on-call 24/7.
There is no playbook on how to navigate the vertiginous ups and downs inflicted by a loved one whose mind is in disrepair and no longer under control, or how to steer through anger, verbal abuse, crying, and paranoia, emotions that can blow up to gale force and suddenly subside, leaving whiplash in their wake.
The part I found hardest is that every day is unique and anything but routine: Predictability is a word not in the dementia dictionary. It’s a page ripped out by a brain that has lost its way.
As a guardian, I came to simply call myself Naomi’s “wrangler,” dealing with whatever needed to be done, which included retrieving her lost walking canes around Montpelier, in what I called a funny version of “Where Waldo?”
The wonderful store owners and people in Montpelier deserve a shout-out. For six months, during a time living on Elm Street and fiercely trying to remain independent, Naomi was a constant, and at times confused, presence downtown.
So many people, including the police, walked her home or helped her cross streets and find her way. Capitol Grounds and Birchgrove, her favored cafe haunts, let me pay for a gift card they kept on hand so she could simply walk in and get her coffee or food when paying became too difficult for her. They say it takes a village, and Montpelier proved that axiom.
I know many others are just starting this journey or are in the middle of it. The lessons I learned are simple. Call on friends and neighbors to help, because they are willing to pitch in.
Find time to be outside to walk or exercise or do things that ease stress. Use Front Porch Forum, where I found excellent aides to help out and made helpful connections. Talk to others who’ve been through it all; their experience and knowledge can save a lot of research and provide a lot of comfort.
Having friends who have gone through this, I gained tremendous sympathy and respect for what they went through, some of which I was oblivious to at the time.
For all of you out there dealing with this, you have my immeasurable respect and thanks for what you do. For lawmakers and state officials, a comprehensive plan to deal with this crisis is badly needed, and already overdue.
The material presented here represents the opinion of the author and does not reflect the opinions of The Bridge. Commentaries may be submitted to editor@montpelierbridge.com. Preference is given to submissions by those who live in central Vermont. Submissions are encouraged to be 500 to 750 words in length.
