If you haven’t already, it is likely that you will one day find yourself caring for an aging, sick relative. Once upon a time, this kind of caregiving was done at home and indeed, when I was a child, many of my friends and playmates helped with that care. “I can’t go to swimming today, Ronni,” they would say. “I have to take care of gramps while mom goes shopping.”
Today, for a variety of reasons, home care is frequently impossible, or impractical, so you will need some form of professional long-term care. And it will not be easy:
“[Long-term care] is the country’s best-kept embarrassing secret. Almost every adult in this country will either enter a nursing home or have to deal with a parent or other relative who does. Few people, however…are prepared to deal with a system that is seriously flawed.”
Those are the opening words of a book by brother and sister, Robert L. Kane, M.D. and Joan C. West - It Shouldn’t Be This Way: The Failure of Long-Term Care - which tells the story of their quest for appropriate, quality care for their mother over the final three years of her life following a stroke.
I met Dr. Kane recently in St. Paul where I shared a panel with him during a taping of a PBS series titled, Life (Part 2). He holds an endowed chair in long-term care and aging at the University of Minnesota School of Public Health. His sister is an educator, currently an adjunct professor at St. Joseph’s College in Patchogue, New York.
Their story is harrowing in the practicalities of choosing appropriate facilities as their mother’s health declined. Assisted-living has as many definitions (and regulations) as there are states, and there is no mechanism, even in the age of the internet, to properly assess the suitability of facilities, especially as they are operated by chains of for-profit corporations:
“Most assisted living facilities have a sales office. Although the sales people were friendly enough, we knew to approach them with the same caution one employs in a used-car lot. They have a product to sell. No assurances are too great, no claims too exaggerated.
“Because family, not the resident, is often the real customer, many assisted-living facilities invest heavily in the look and feel of the common areas. This is what people see when they come in. Little of it is ever used by the residents, however. For them the salient aspects are rooms where they live, the food, and the staff.”
Following each chapter, Kane and West provide an excellent checklist of important points to remember, “Lessons,” which in the case of choosing an assisted-living facility include:
- Make sure you see the actual room promised, not just the common space or some showroom.
- The term assisted living has come to mean anything a vendor wants it to…In general, you get what you pay for, but the formula is never that simple.
- Assisted-living facilities will continue to look to family members to intervene in crises and to provide services.
- Most assisted-living facilities do not view themselves as health care providers and are very likely to respond to a resident’s health problems by sending the person to the emergency room.
When your relative can no longer live at all on his or her own, a nursing home is the next step. They are an entirely different animal from assisted-living facilities with fixed rules and regulations, but can still vary widely in quality. Some of Kane’s and West’s “Lessons” from that chapter:
- It is essential to shop carefully for the right nursing home…Try the nose test: If it smells like feces and urine, get out. If it smells like disinfectant, beware; to much may be sacrified to achieve cleanliness. But if it smells like chicken soup, this could be the place
- Informal caregiving, the jargon for family care…never stops, even after a person enters a nursing home.
- Nursing home residents need active family advocates. Like it or not, squeaky wheels do get the grease.
- No matter how “out of it” a person with dementia seems, moments of lucidity are possible.
This and the rest of the knowledge and advice in this book are hard won. Even Ms. West and her brother, a respected gerontologist with a worldwide reputation in his field whose mother had substantial financial resources often felt nearly defeated by the long-term care system in the United States. Their experience can help you navigate the labyrinths.
While recounting their mother’s story, Kane and West cover rehabilitation facilities, assisted living, dementia units, nursing homes, doctors and hospitals and informal (that’s you) care. They are clear-eyed, informative, compassionate and angry about the state of long-term care.
“No organized voice speaks for long-term care consumers and their families. Most nonprofit advocacy groups are organized around a specific disease…The time has come to create a national organization to build a groundswell of concern and attention for long-term care,” they write.
Good long-term care makes a big difference in the lives of those who need it and their families. Good care does not happen by accident. It must be actively pursued and it can, say the authors, be done:
“Universal long-term care is feasible. Other countries have developed universal programs that cover long-term care. Some use public monies; others use a combination of public and private money.”
I read a lot of books on various aspects of aging. Few are worth the effort due to too many feel-good platitudes and not much new thinking or information. It Shouldn't Be This Way is extraordinarily worthwhile, filled with hard facts, compassion, understanding, instruction and good ideas we will all need one day for as the writers report:
“…40 percent of all adults in this country who live to age sixty-five will enter a nursing home before they die. Even more will use some other form of long-term care. Few people, however…are prepared to deal with a system that is seriously flawed.”
When one of the most respected gerontologists in the world – someone who can pull rank to speak directly with physicians and directors at long-term care facilities – cannot get through the bureaucratic maze without superhuman effort, what will the rest of us encounter? Dr. Kane’s and Ms. West’s guidelines are an indispensable guide.
[EDITORIAL NOTE: Dr. Kane has graciously agreed to answer any questions readers may have about long-term care. Please leave them in the comments below. The cutoff date is 31 March and I will post a followup-story with Dr. Kane’s answers shortly thereafter. Please keep in mind that he cannot comment on specific health conditions or facilities.]
UPDATE: Questions are now closed.