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

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.

But here’s where it gets tricky, required services, in turn, are a function of need. And need, ultimately, is a function of condition. It is, in reality, the long-term care customer’s condition that will determine need; need that will deter-mine service; and service that will define setting. If a provider can accommodate any condition, adjust to any need occasioned by that condition, and provide all services responsive to that need, it makes little difference whether that provider is called home care, assisted living, adult day care, or skilled nursing.

I wrote those words, but I had never truly experienced their meaning until having lived through my mother’s experiences of the past 12 months. Our failing and, as it turns out, the failing of so many who pay lip service to the concept of aging in place is to overlook its real implications. The primary implication we overlook is the simplest one: Mom will age in place. We can’t fault communities for failing to recognize that reality if we fail to recognize it ourselves.

But we can fault both communities and ourselves if we fail to do something about it. Yes, we sons and daughters were clearly at fault when assuming that Mom could spend the rest of her life in a community that was clearly not designed to deal with the realities of her aging. And the community was equally at fault for failing to make even modest attempts to accommodate it.

The evidence that this was so became increasingly obvious during the past year. For example, medication management in the facility was all but nonexistent. Resident falls inevitably occasioned a call to 911 (and subsequent hospitalizations). Staff had not been trained to perform even the simple service of reinserting hearing aids. It’s not that Mom was in “affordable” assisted living, with services limited by the exigencies of budget—quite the contrary. Her monthly bills far exceeded industry averages. Rather, the problem lay with the reality facing so many in long-term care. To reiterate: It’s one thing to talk about aging in place; it’s quite another to accommodate it.

When I made the journey back home to confront these issues, I was confronted with yet another issue—the suggestion by facility management that the preferred approach to handling the additional services required by my mother’s increasing frailty was to supplement her care with private-duty support (this expense on top of the already hefty fees being paid). After discussing all this, our family’s reaction was to find a setting where the focus on healthcare was as prominent as the focus on hospitality—indeed, where it was recognized as a critical and indispensable component of the service package itself. And here’s where things really got difficult.

It was all but impossible to find such a facility. For example, very few assisted living communities are willing to accommodate the concept of the two-person transfer. How can one talk about aging in place if you are unwilling to recognize that increasing frailty will often lead to the inability of a resident to participate physically in the trans-fer process? Mom would like to help—but she just can’t. Yet, should that need inevitably require a different kind of transfer, i.e., one to a nursing facility? Twenty-four-hour nursing might be nice, but Mom has no pressing medical needs, and it isn’t essential. Moving to a nursing facility just didn’t seem appropriate, at least not for now.

That’s the dilemma. Most freestanding assisted living facilities can’t really fulfill the promise of aging in place. In retrospect, this might well have been the time for us to look to the nursing facility as, in fact, the location best capable of dealing with Mom’s remaining years. And from a purely clinical perspective, that is exactly what we should have done.

I know about nursing facilities. The public’s perspective notwithstanding, I am well aware of their commitment to quality. I was proud to have represented them for 14 years in Washington. Indeed, colleagues in Minnesota recommended to me the best nursing facilities available in the Twin Cities area. We visited a number of them and were duly impressed.

But, quality notwithstanding, Mom was not ready for a nursing facility—not physically, not psychologically. What we really needed, we decided finally, was a community oriented not to the particular state in which the resident finds herself, but to the constantly changing situation reflected in the aging process itself. And the service pack-age offered by CCRCs is, perhaps, the best example of that particular model.

No one provider type can easily or efficiently offer the entire continuum of long-term care without offering numerous settings. To CCRCs, the setting’s name is less important than the attempt to accommodate changing customer needs in familiar and comfortable surroundings. Responding to the concept of aging in place, they have not changed the definitions of the various locations in which care is provided but rather have changed the definition of “place.” Place is a state of mind, a level of comfort. It need not be a particular building or even the same piece of ground.

Locations may need to change during a resident’s stay. Settings capable of providing assistance with activities of daily living may not be in a position to offer continuous skilled nursing intervention. A resident’s need for convenience services is a far cry from the need for medication management. But the wise provider knows when transitions have to be made. And the compassionate provider knows how to do so without damaging the resident’s sense of community. CCRCs, perhaps, do it best, but numerous campus-oriented innovators are out there moving in the same direction.

We were lucky enough to find such a community. While calling itself assisted living, it was oriented more toward the individual than to any particular licensure category. It recognized that the customer’s situation today might differ considerably from her condition tomorrow, and it was ready to accommodate that ever-changing reality. To do so, it was ready to assume responsibility for delivering care within the context of those altered circumstances (and, as it turned out, at less cost).

Mom moved into her new home this September 1. Meanwhile, have we, her children, learned from our past mistakes? Only time will tell. I will try to keep readers posted from time to time on this long-term care odyssey and what I’m learning from it. But I can say this: Claims of aging in place are, and must be, more than glossy marketing. It is, when done right, a meaningful attempt to respond to our customers’ most basic needs. While it may tax our capacity for innovation, it’s well worth everyone’s effort.

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