‘Every day is an improvisation’ when caring for aging relatives

How many of us have seen problems with older relatives that we’ve looked away from, not wanting to acknowledge their seriousness or fully face the consequences?

There’s a word for this: denial. And there’s a good example of how it can affect family decision making in the current issue of the Journal of the American Medical Association. [Note: AHCJ members have free access to JAMA.]

Judith GrahamJudith Graham (@judith_graham), AHCJ’s topic leader on aging, is writing blog posts, editing tip sheets and articles and gathering resources to help our members cover the many issues around our aging society.

If you have questions or suggestions for future resources on the topic, please send them to judith@healthjournalism.org.

It’s a personal story written by Carolyn Cannuscio, a social epidemiologist who studies aging, about her beloved 96-year-old grandmother, Nana.

After a nasty fall, Cannuscio and her mother move Nana from Florida to a Pennsylvania assisted-living facility that they had visited often and checked out with some degree of thoughtfulness.

“We grilled the staff about their services, the environment, and the nature, costs and limits of care my grandmother would receive there,” Cannuscio writes.  “We were assured by the credible marketing director on multiple occasions that this would be the last move Nana would ever have to make.”

What a reassuring promise.  If only it were true.

Cannuscio and her mom soon find that the facility is unprepared for Nana’s arrival, with “no clear plan for her daily care, no bedroom door, and – most importantly – no grab bars in the bathroom.”  What?  They didn’t make sure these plans were in place before Nana stepped on the airplane that took her away from Florida?

It gets worse – right from the start.

We quickly learned that the facility was so understaffed that Nana would be neglected on the standard care plan.  We saw residents stranded in wheelchairs in random spots in the hallway, hoping for a generous guest or a more able-bodied resident to guide them to dinner.  We then accompanied Nana to dinner ourselves and saw residents waiting unattended and unfed for long stretches, until they were addressed rudely by the harried wait staff.

Where were these alarming signs when Cannuscio and family members visited the facility in advance of her grandmother’s move?

As it turns out, they were hiding in plain sight.  Searching the Internet, Cannuscio had come across a report from the state health department that apparently showed problems with the facility’s sanitary practices.  And during a visit, she’d been taken to an apartment reeking of “cat excrement” that was home to a “disoriented, disheveled man who clearly needed more help than he was getting.”

Yet, hope prevailed:  hope that this squalid apartment was an aberration, that Nana would get the care she needed, that this difficult move would prove satisfactory in the end.

Hope such as this is entirely understandable.  But in this case, it led to denial:  a refusal to give adequate consideration to evidence that this assisted-living facility wasn’t what it was claiming to be.  After Cannuscio acknowledged that, she was distressed to discover that no federal standards govern assisted-living facilities.

In the end, however, she lays blame on “my fantasy that all of our elder care problems would be solved” with the move to assisted living.

Indeed. As older people become frail, like Nana, problems abound and there is no foolproof solution.  Not if the older person is cared for at home, not if they’re in assisted living, not if they’ve moved to a nursing home.   Daily challenges exist in all these settings and, as Cannuscio notes at the beginning of her piece, “every day is an improvisation.”

It’s our job as journalists to bring these challenges into the public realm, where they can be seen clearly and understood in context.  Our hope is that the material going up now and in the months ahead on AHCJ’s aging web resource – information about assisted living facilities and nursing homes, on long-term care and caregiving, on aging-in-place and home care – will help as you pursue these kinds of stories in your communities and make it harder to deny the very real problems that so many seniors face.

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