Crossing the Unicorn

I‘m no longer transitioning to old; I am old. I’m approaching my expiry date. The once vibrant older generation that birthed, nourished, and raised us is long gone. Life is now punctuated by frequent visits to healthcare providers and diagnostic tests. Practitioners worry about incontinence and falls. There are periodic queries seeking to uncover the true number of days each week where I believe life is no longer worth living—that all hope is lost.

We cared for my aged mother-in-law at the end of her life. Until she broke her hip and transitioned to a care facility, she was our non-stop companion. We could not do anything, go anywhere, or take a meal without her. Even when her cognitive decline became apparent and she believed we were paid companions, not family, it was inconceivable to her that she was not the center of our universe. It was fun, pleasant, rewarding even, until it wasn’t.

Our story was not unique. Far from it. Today, the popular press shares more intimate detail about these care relationships. Unfortunately, recent articles on the topic omit discussions of those quality-of-life issues ever present on the questionnaires I complete on visits to my PCP: Toileting and other issues of personal hygiene, and other self-sufficiency issues. Just how many times does someone under your care require a change of clothing? How often are you doing their soiled laundry? Answer: Best not think of this.

Here's the bottom line: It you’re a conscientious and loving caretaker, your charge is likely to have a surprisingly sunny view of their quality of life. As the caretaker, you may not share that perspective.

Been there. Done that.

Transitioning to a care facility exchanges one set of caretaker experiences for another. The new maxim: If your relative in care isn’t happy, then you’re not happy. Even the best of care facilities imposes an unwelcome and feared reality.

My MIL passed away several years ago. We struggle to remember her in more vibrant times and circumstances. We work at sublimating memories of those final years.

Now, I have an older sibling who relocated to be closer to us. We are SIB’s only ground troops. I have another sibling across the country (ATC-SIB), and I have no doubt ATC-SIB) will more than rise to the occasion when circumstances warrant. Yet, ATC-SIB lives far from us. Once again, we are at ground zero.

Retirement planning for my MIL’s generation was Social Security, Medicare, and a pitifully small savings account. When she was “healthy,” this wasn’t a problem—until it was. By contrast, SIB has all of this plus a generous pension, savings, investments, and the equity in her mortgaged home.

From our learned experience, SIB is better prepared for some end-of-life experiences but not all. Extended medical and custodial care is expensive. SIB’s resources are unlikely to extend to those expenses, the mortgage on SIB’s home, or SIB’s remaining, unpaid financial obligations. SIB’s next medical emergency could change every aspect of her life and independence. She may be aware of these changes and consequences in real-time but incapable of changing and managing them. Or, she may be unaware and others must manage affairs on SIB’s behalf.

What would SIB want? Should SIB’s assets be liquidated, and cash stockpiled to fulfill the obligations of her estate? Some decisions are irrevocable and unrecoverable. SIB may have no home in which to return, assuming a recovery permitting some degree of independent living.

SIB is not a planner. Not a problem, however, because SIB intends to outlive us all. No one has the heart to tell SIB that is unlikely without a whole-body transplant—now. And no one dares mention SIB’s worrisome cognitive deficits.

Did I mention SIB is not a planner? In SIB-land, all will be well for her until the moment it isn’t. SIB does not worry, because SIB will be gone. No hanging on to life at the end, in a coma, tethered to machines unable to communicate with anyone, or worse yet, able to communicate with everyone. Take your pick. Each outcome presents its own set of challenges for the ground troops.

SIB has devoted pets. SIB has prepared for their continuing care following SIB’s demise providing someone can rescue them from home lockdown if and when SIB suddenly exits. We can go for days without hearing from SIB. She’s fiercely independent and not a proponent of proof-of-life calls. How long can a pet survive without food or water?

SIB is not proficient at anything technology. Newly purchased phones and computers are returned to the point of purchase because they worked yesterday but not today. And SIB’s done nothing untoward to cause these problems These things simply, if inexplicably, don’t work for SIB. Intended videoconferencing? Not a chance. Texting, email? Hit or miss. Telephone calls? Well, there are frequent “butt dials,” and the touch sensitive screens of smart phones result in unexpected dial tones, key presses, and unanticipated transfers to Face Time where we watch SIB’s skin pores. Camera phone? Please.

SIB does have an Advance Care Directive, although getting one completed took some arm twisting. Does SIB’s PCP, or us for that matter, have a copy? No, why is that even necessary?

SIB does have a Last Will and Testament. My ATC-SIB is currently the Executor, although having read this document and all of the foregoing, ATC-SIB is now exiting that role. If ATC-SIB withdraws as Executor, SIB must have a new Will drawn and a new executor designated. Will SIB do so?

I’ll defer a retelling of the bizarre nature of SIB’s bequests. Good luck to any future executor in fulfilling SIB’s wishes.

So now comes an ethical question: What obligation does ATC-SIB and I have to SIB who refuses to be drawn into the necessary arrangements for those final days on earth? These discussions and arrangements are a necessary obligation of the living. SIB’s preferences and choices must be enumerated, decision points identified, and who has a (willing) role in that process.

Our experience with my MIL was an eye opener. She was a person of limited means and resources who lived well beyond the capacity of her body and mind. Each of her final stages of life passed quickly for her even if time passed far more slowly and awkwardly for family providing her care. My MIL prided her independence and dignity throughout her life. She would not have been happy burdening any of her children. Far from it, in fact.

By contrast, SIB—who claims she will live to be 100—seems undeterred with the untidy details and decisions of what life for the future entails. Indeed, SIB is thoroughly resistant to discussing the “what ifs.”

You ignore life’s lessons at your own peril. There are no “do overs” on final arrangements and wishes—and there is great potential for collateral damage.