Caring for loved ones in final days requires negotiation


I have a whole pile of swell ideas for newspaper columns — articles, emails, stray thoughts, experiences, what-not — that call to me on a weekly basis; most of which could, conceivably, do some of us some good, or that represent commitments made, or … Anyway, the point is that I make a genuine attempt to work through them.

So here I am, just having spent several weeks on a soapbox about respect and dignity and negotiation and safety and what do I see in a Western Washington newspaper a couple of weeks ago? An article from The New York Times, with a headline that proclaims, “Staying independent in your older years – It can be done – with some help.”

That got my attention. The article points out some of the challenges that can accompany surviving past our historic shelf-lives: The costs and risks of finding competent and affordable in-home care, the limits of long-term care insurance, Medicaid, Medicare, challenges for families, blah blah; and, of course, we’re educated as to today’s statistics regarding how many of us are inconsiderately living past what age, tra la.

In fairness, the Times article does extol the virtues of having our homes designed, re-designed, retrofitted, whatever, to accommodate us. Amen! And it does soften its reality-laden blows by referencing a nonprofit group of volunteers, called “Staying in Place,” who help those of us 50 or better to “…maintain active, independent, fulfilling lives in their own homes.” Great! Sadly, said volunteer group operates in Woodstock, N.Y; alas, several hundred thousand of us tried migrating to Woodstock back in the ‘60s and while the experience was … memorable (for those of us who remember it), most of us would be loathe to repeat the experience of chanting “no rain” — in the rain.

I quote the Times article: “… remaining in one’s own home indefinitely is not always the best choice, even if it is financially feasible. As life draws near a close, many older adults need more care that can be provided safely (emphasis mine) at home.”

Really?

An accompanying article, also from the Times, shouted to us: “Knowing when home alone no longer possible,” and proceeded to list 21 situations, conditions or events that could “… help families determine when the time has come to move older relatives from their homes and into a more supportive environment …”

How helpful.

Again, in fairness (which I sometimes think is greatly over-rated), I wouldn’t argue the accuracy of any information presented in either article; and, clearly, both articles targeted “families,” meaning (I presume) anyone vaguely related to whichever elder might be in the family’s crosshairs today, and I’d certainly agree that there are “problems” associated with “not dying.” What do we suppose I’ve been going on about for the last 12+ years?

Here’s my problem(s): (1) All of this helpful info was targeted, again, toward families – like it was going around the elder; (2) elders read papers – I would have suspected that The New York Times would know that; so, elders read those same 21 “warning signs” that can “… help families determine when the time has come…” and do you know what some elders decide?

Right: They decide to keep secrets. They decide not to mention that this-or-that happened or that this-or-that is getting to be too much or they got confused about this-or-that or or or … sshhh, be quiet, because “if I let them know that, they will determine that the time has come … sshhh.”

So nothing is said. The bad news, the fears, the scary things aren’t communicated, because we’re keeping secrets — because we value our lives and our independence and respect more than we value “safety.” …sshhh.

So we don’t take a little help – make a few adjustments, cut a few corners, find a few different ways – that could make life a whole lot easier (and, probably, safer) because we don’t want it determined that the time has come.

And some of us, with a bit more…chutzpah, just get mad: “Oh, yeah? Try it! I’ll do what I want, when I want, the way I want and if you try to mess with it, you’re going to pull back a stub!” (Or something even more colorful). We get mad, we get stubborn and we become even more entrenched, but the outcome is the same: No help.

I have no illusions about my ability to influence the editorial decisions of The New York Times, but I do hope to influence “families,” so one more time: Take the word “negotiation” and have it tattooed on your heart, then pray that the people who love you will do the same.

Do unto others.

Mark Harvey is the director of Senior Information and Assistance for Olympic Area Agency on Aging. He can be reached at harvemb@dshs.wa.gov or 532-0520 in Aberdeen, (360) 942-2177 in Raymond or (360) 642-3634. FACEBOOK: Olympic Area Agency on Aging-Information & Assistance.