Ten years ago, my wife Barbara was diagnosed with “early onset Alzheimer’s,” revealed and confirmed by a battery of tests, including the standard MME exam, a Pet Scan, an MRI and a spinal tap. The neurologist informed us, from her experience that Barbara had “it” beginning at least four years earlier, when she was 54.
The diagnosis, delivered very clinically, was shocking, even as I knew for a while that something was wrong with Barbara, a woman of great capacities and energy — founding chairperson of the South Orange Performing Arts Center (“SOPAC”), president of our synagogue, Temple ShareyTefilo-Israel, president of the PTA, and an admired and well-respected lawyer. She was increasingly “not herself,” more easily confused, less confident and prone to memory lapses.
We both kept our “game faces” on, even with our three daughters (however much they had their own suspicions), maintaining an active social calendar, and traveling frequently. Very few people suspected anything — Barbara was (and is) quite beautiful, fit, articulate, gracious — and we covered the gaps. I led the conversation at dinners with friends, arranged seating at events or receptions (with me close by to answer questions that she might blank on — no more dividing and conquering), rehearsing situations where she might have to speak, and increasingly, managing the details of our life that would have previously earned me sharp elbows.
At the same time, we pursued avidly any and all therapies that seemed to hold promise for curing or attenuating the progression of the disease, including years of weekly IVIG (intravenous immunoglobulin) treatments, RTMS (repetitive trans-cranial magnetic stimulation) treatments, participation in a two-year clinical trial of a then-promising (“BACT Inhibitor”) Merck drug that proved ultimately to be ineffective, taking various medications, most of which are wearyingly familiar to Alzheimer’s patients (with no new drugs under the sun for years now), and for the last two years, light therapy (gamma rays into the brain 20 minutes a day for six days a week), a new therapeutic approach that is currently being evaluated. In addition, we’ve embraced over the years an active fitness regimen, and tried to maintain a reasonably healthy diet (won’t lie, it’s a challenge — Barbara loves those carbs).
Two years ago, Barbara had a serious fall, and after five weeks in a rehab facility, returned home physically healed but mentally diminished, manifested most dramatically with the loss of command over her words, further compromising our relationship, and those with friends and family; unable to participate in a conversation, whether around the table, in a reception or on the telephone, Barbara gets readily agitated, feeling, I’m sure, excluded, invisible … which, in itself, is exhausting. Not surprisingly, she gets depleted quickly.
About one year ago, I decided to arrange a meeting over lunch with our three daughters, without Barbara, to have a “being mortal” conversation — what they understood of their mom’s condition, how it made them feel, what they feared, what they wanted, how we should move forward together, etc. That was MY agenda for lunch — but not theirs. “Dad” they said, after my agenda-setting intro, “we love mom, she matters to us very much, but we have no real relationship with her … she only sees you, wants to be with, you. So dad, listen up, here’s what we want to talk about: If you go down, we’re f***ed!” “Whaat,” I protested, “I’m not going down! — and what kind of language is that?”
They then proceeded to lay out their conditions, nonnegotiable: (i) I should hire a caregiver to take some of that 24/7 responsibility from me — and familiarize myself with nearby memory care facilities should that become necessary (and consider placing a refundable deposit with one or two that I favored, given what could be lengthy waiting lists for admission); (ii) find a shrink, and schedule a visit, to deal with my feelings, sure, they were that I wasn’t; and (iii) use my strategic mind to figure out how to have an active and fulfilling life, in parallel with or somehow integrated with, my life as a caregiving spouse. Wow. It all kind of took my breath away — my girls were really something … giving ME marching orders.
The Game Plan
Nu? First, I visited all of the memory care facilities proximal to our home, got a chance to compare them, and decide, if and when, which I would favor — and, at the same time, saw clearly that, for now, the best place for Barbara was still her own home. Next, I found a caregiver, who would work at least 30 hours a week, and was loving, caring and unflappable, who has indeed enabled me to take precious time for myself. Then I found a psychiatrist that I liked, and have visited with several times, who, to my surprise, WAS able to peel away the wrap around feelings that were hidden there, and needed to be touched and named, out loud, like, for example … loneliness (not easy). And finally, I’ve been working (with my brother) on a strategy, a “game plan” for us old jocks that I and other “family member caregivers” could utilize daily, with tools, techniques, and a philosophical approach that could promote learning and development for the caregiver even as he or she is providing a full measure of care, often under very trying circumstances, to a loved one — we’re calling it “share-giving,” and we believe it can provide a powerful path to empowerment and resilience for the family member caregiver, who has actually been given the “gift” of caring.
So my girls were smarter than their father. They pushed me to reframe the way I am going about caring for my wife, and myself, and inspired me to think creatively and strategically about my life as a … “sharegiver.”