Bill Thomas, in response to an earlier essay I posted on his blog, asked me what I imagined custodial care would look like in the future.
Shortly thereafter, I was hospitalized with pneumonia for the fourth time in as many years — each hospital stay followed by an average of three weeks of rehab in a Skilled Nursing Facility (SNF). At the conclusion of physical and occupational therapy, I returned to the assisted living community where I resided.
In fact, over the course of the last twenty years, as I’ve stayed the course in my battle with Young-Onset Parkinson’s, I’ve spent time as a resident in three Assisted Living Communities (ALC) in two states, more than ten acute-care hospitals and roughly a dozen SNFs.
In light of these facts, I believe it’s safe to state that today, now 65, I bring no small measure of personal experience to a discussion on the future of custodial care in the US.
First, let’s define our terms: Custodial Care (CC) is supervised, long-term care. The word “custodial” itself means “providing protective supervision; watching over or safeguarding.” The terms “custodial care” and “Long-Term Care (LTC)” are interchangeable and refer to the kind of care one receives when in need of assistance with activities of daily living (eating, bathing, toileting, etc).
In the mid-nineties, when I had the opportunity through my blog, Mr. Long-Term Care, to interview Hillary Clinton, Jimmy Carter, Clint Eastwood and other prominent individuals on the subject of LTC, we tended to conjugate our verbs in the future tense. (i.e. the inevitable and catastrophic cost — in financial, emotional, political and personal dynamics of LTC was always an event that was going to happen.)
Today, two decades later, we conjugate those same verbs in the present tense.
The train that Jimmy Carter used in our discussion as a metaphor as in ” . . .the dining car is filled with sated Americans traveling 200 mph on a stretch of track from NY to Washington, unaware of the train-wreck around the next bend,” is finally heading into that bend with dozens of derailed cars on the tracks, and we are truly ill-prepared population and what awaits them. Now let us return to the question at hand . . . How do I perceive the future of custodial care in the future.
As the Great Generation fades into oblivion, and 77,000,000 Baby Boomers move in and take their place, I perceive an American phenomenon I call Denture Capital — money initially designated as testamentary, second-generation gifts, caught in a power struggle between parents with expanded LTC needs (as they continue to live beyond expectations), and their children, who’ve always fancied themselves behind the wheel of an XKE Jaguar.
But I digress . . .
Let’s stay on topic; namely, custodial care circa 2040.
What will LTC look like in 25 years?
Here’s a hint — didn’t we learn anything from warehousing the mentally ill?
Bleak, institutional living didn’t work for the mentally ill in the 50’s and it won’t work today for those who need Activities of Daily Living assistance.
If we are to create a custodial care system that actually works, we need to look closely at three components:
(1)Size; I have a friend who left a 75-bed assisted living facility as its medical director and created a very successful 3-bed “sanctuary” for advanced Alzheimer’s patients in her home . (Complete with horses, a beautiful parcel of land and a deep personal commitment. All this becomes possible when you adjust the SIZE of your resident population. The days of the 100-bed assisted living facilities are over.)
(2)Service: Americans, once proud and vigorous volunteers in a wide range of worthwhile projects have forgotten their heritage. John Kennedy said it best at his inauguration: “Ask not what your country can do for you, ask what you can do for your country.” We need a national long-term care volunteer program the likes of the Peace Corps.
(3)Community: While my sister Linda lay dying of cancer in her Toronto home in 2001, the communities of Buddhists and gay women – both integral parts of her life – appeared in such numbers that many spent nights in sleeping bags on floors throughout the house.