Like any good rollercoaster, the build-up to an Alzheimer’s journey is gradual, and often pretty tame. If you choose to, you can ignore what is to come. It begins with a few signs, like the ones described in D Day. Inevitably, however, an injury or event or gap in care tips you over some point of no return, and downhill fast. For us, that transition from slow march to free-fall happened on a January evening in 2016.
THE CALL
“What’s wrong?”
My husband came home from work to see me standing by the kitchen counter, staring at the phone in my hand. Someone who was no longer on the other end of that phone had delivered the unwelcome news. Hours earlier my Dad had skied hell-bent onto the locker room deck while having a heart attack. He’d been airlifted to Reno where he hung onto life, but barely.
I answered my husband with the only thing I knew to be true in that moment.
“It’s beginning.”
BUCKLE UP, HERE WE GO
I had no clue what “it” would look like, but a new life phase had just begun. Less than 24 hours later, having thrown the keys to my 16-year-old son and told him to “figure it out this week,” I had traversed the country to an ICU in Reno, and was with my three siblings at his bedside. Forty-eight hours after that we all sat in a small windowless conference room under fluorescent lights. With us were a med student, my Dad’s best friend—who happened to be a surgeon—and a hospitalist. A hospitalist, I had just learned, is the person who synthesizes all the bad news about the health of your loved one and distills it into one agonizing choice, the choice we needed to make right then: Do we “Stop care,” AKA pull the plug on my Dad, who would turn 86 in four days; or do we roll the dice and wait to see if, and with what capacities, he would emerge from his unconscious state.
The factors we were to consider in our decision sounded like they came from Charlie Brown’s teacher. A lot of “wah wah wah” bouncing around my ears in a situation that felt surreal. Surely there was somebody better equipped to sift through the information and make this decision. Someone more grown up and with more authority, like, say, Dad. In reality, nobody was going to tell us what to do, and the “right” answer, was obscured by unknowable questions.
LIVING VS SURVIVING
“What would your dad want?” the hospitalist asked. That was a tough one. On one hand, Buck would want to live at all costs. He lived large and loud, his 6’2” frame and penchant for gravity leading to accidents that garnered him everything from scrapes and shattered bones to concussions and back surgery; but he always bounced back—a little slower and with significant hitches—but with the same full-tilt approach. Just two nights earlier, on my way across the country, my friend lovingly consoled me with her assurance that, “Buck’s like a cockroach. He’ll survive this.” I found that strangely comforting and not at all offensive.
As much as he admonished my kids on the perils of extreme sports, in his own life he liked nothing more than pushing his limits. Even if he did pull through, would the predicted best case scenario of daily dialysis and a wheelchair-bound existence with limited function be what he considered “living?”
For help on this we looked to the surgeon, his trusted friend Dr. D, who had been steadfast throughout this crisis. “If it was me,” Dr. D explained, “I would not have been resuscitated in the first place. I have clear wishes.”
THE GREAT UNKNOWN, AND UNDISCUSSED
My dad had not expressed or recorded clear wishes, which complicated our dilemma. In all aspects of his life, and his advice for ours, he was pragmatic to a fault; but he never dealt with the eventuality of his own mortality. None of us had. Looking back now, that gaping hole in our family communication was bonkers, especially considering Nina’s now complete dependence. Then, however, it seemed mean and disrespectful and never the right time to start a conversation with Buck on the topic of his death or incapacitation, so we never had. Other than checking the organ donor box on his driver’s license we had no clue what measures he would choose for debilitating injury or end of life care.
We resolved to retreat, contemplate and reconvene in an hour. Meanwhile, back in Buck’s hospital room the one person in our family who had not been in that conference room sat quietly by his side holding his hand, completely focused on him just as she had been in their 59 years of marriage. When Nina heard me come in, she turned to look at me, her eyes filled with so many questions that she could not form and that I could not answer. The biggest one for both of us: who would take care of her now, and how?
This was yet another example of our experience that I’d later discover was a common scenario. Buck had been Nina’s sole caregiver. He took on the full responsibility (and stress) of it, and resisted any outside care. If he had a vision for their long-term care, or a contingency plan should he die before Nina, it was secret to us. Instead, with my sisters’ help (if notified or requested), they played whack-a-mole as any medical emergency came up. Just as neither of them had expressed verbally or on paper their end of life wishes, we siblings never talked to each other about how we would care for mom if Dad became incapacitated. We had no plan B on caring for mom, mostly because there was no plan A.
STOPPING CARE, STARTING OVER
Ultimately, we made the decision to Stop Care. The decision was unanimous, which it had to be for us to make it, but still felt horribly unsure. Emerging from the hospital, without Buck, it felt like we’d passed through a portal, to a place you only see after you’ve lost parents. In the days that followed I would realize how I had not been there for my friends who had lost parents and gone through this shift. But I also understood that you can’t possibly know what it’s like until you’re there, because we don’t talk freely about death and dying in our culture; or, at least I never had in my corner of our culture.
In the days that followed friends and family who had been through the portal seamlessly bridged any awkwardness, reaching out to offer the help we didn’t know to ask for. The same friend who had lovingly called Buck a cockroach, and whose parents had died recently in quick succession, now offered nitty gritty details on the necessities of death: The coroner, the undertaker, the death certificate, the forms and procedures. It was incredibly kind and helpful of her to lead us through a place nobody really wants to visit or revisit.
Back at the house, a steady stream of visitors and well-wishers would flow through, keeping our spirits up and offering help. What nobody could tell us, however, was where to go from here. It was clear that Nina could not be alone. Where would she live and with whom? Why had we not even contemplated this before? I had to remind myself that we had tried many times to bring caregivers into their lives. It’s not as easy as it sounds.
UP NEXT:
Why it is so darned hard to get help, even when everyone in the equation knows they need it. Plus, some tips and thoughts on what could have helped. Lighter on the Grim Reaper next week, I promise.
Brilliant!