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Paul Willging says...I've learned about long-term care's reality, thanks to Mom

April 1, 2008
by Paul Willging
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Paul R. Willging, PhD, was involved in long-term care policy development at the highest levels for more than 20 years. For 16 years as president/CEO of the American Health Care Association, Dr. Willging went on to cofound the successful Johns Hopkins Seniors Housing and Care postgraduate program (cosponsored by the National Investment Center for the Seniors Housing & Care Industries), and later served as president/CEO of the Assisted Living Federation of America. He has enjoyed an equally long-lived reputation for offering outspoken, often provocative views on long-term care.

I’ve been at this business for some time now. First came 13 years with the Health Care Financing Administration (now the Centers for Medicare & Medicaid Services), where I was intimately involved with issues surrounding both the financing and quality of long-term care. That was followed by 17 years representing both nursing homes and assisted living facilities in Washington, D.C. In the last six years, I have been consulting, teaching, speaking, and writing on those same issues.

You’d think I’d know it all by now. But let me tell you, nothing brings the real issues of long-term care home in a more compelling fashion than confronting them personally. As I write this piece, I’ve just returned from Minnesota, where multiple siblings and I spent a fascinating, frustrating, and educational week seeking an appropriate long-term care community for Mom.

Not that this is our first venture into the thicket of long-term care. Mom and Dad left their high-maintenance home in St. Paul for an active adult community in Minneapolis in 1989. But, after experiencing a stroke followed by Dad’s death, Mom just wasn’t up to staying in a community that honestly considered itself to be housing, not healthcare. It was time to consider a community that considered itself both. We thought, in short, that it was time for assisted living.

And here is where we confronted a dilemma, one that continues to face the industry: Just what is assisted living? There are still too many providers in the profession who seem torn between the twin (and sometimes fratricidal) concepts of hospitality and healthcare. Mom needed both, and the first community we (Mom included) chose claimed to be both. Certainly, the facility excelled at the former; its physical layout was stunning, its food good, and its staff attentive.

But maybe we didn’t do our homework. Maybe we spent too much time admiring the hospitality and not enough time assessing the facility’s capacity to deal with a frail and declining clientele. It was only when Mom became less and less ambulatory that we discovered that the bathroom in her unit had not been designed for wheelchairs and scooters. And a high-rise with a single bank of elevators is simply not capable of handling the evening rush hour of residents on their way to dine.

Should we have known better? Of course we should have. Our fault lie mostly in our quest to make Mom happy but, in so doing, we focused possibly excessive attention on ambience and less on the community’s capacity for care.

That same failing all but did us in at the next community Mom called home. This time we did measure the width of the doorways. We did check for the ease of movement from one section of the building to another. Doing so showed that we had learned at least one lesson, but we failed in another. Assisted living needs to accommodate not just a resident’s current state, but her anticipated decline, as well. It’s one thing to talk about “aging in place.” It’s quite another to prepare for it.

Mom had been only 74 when she first moved into an active adult community. But by the time she moved into her second assisted living community, she had aged—not just the by 11 more years but more so in terms of physical capacity. Yes, she was still capable of limited ambulation. She could toilet and dress herself, albeit with difficulty. Hygiene required some help but only in terms of navigating the bathtub. (Feeding herself has remained a passion with which she has never experienced difficulty—sorry, Mom.)

We discovered a facility that was well capable of dealing with all those needs—that is to say her needs at that time. And she loved her new home. Indeed, I wrote an article back in 2000 extolling the facility’s virtues and Mom’s ecstasy at having discovered it. “Actually, Mom’s feeling pretty good,” I wrote. “She loves her apartment. It’s close to most of her 10 sons and daughters still living in the Twin Cities area, and they make it a point to get her out and about when she’s not too busy with the activities available at her assisted living community. The staff is friendly, attentive, and capable. While still learning (the building has been open less than a year), they seem intent on treating her like the valued customer she is. All in all, she’s as happy with her living environment as she’s ever been since Dad died.”

The community was perfect for Mom—at the age of 85, that is. But could it accommodate her further aging? As I wrote in this magazine last year:

What it comes down to is this: Saying is easier than doing. We spend too much time grappling with labels rather than with underlying concepts. The issue is not adult day care versus nursing homes. It is not assisted living versus home care. Those are just words, definitions that take on meaning only when applied to the services offered. It is the services offered that, ultimately, underlie the ability of any long-term care provider to facilitate aging in place.

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