About ten days ago, I posted a story about a remarkably good book by geriatrician Robert L. Kane who holds an endowed chair in long-term care and aging at the University of Minnesota School of Public Health, and his sister, Joan C. West. It Shouldn’t Be This Way: The Failure of Long-Term Care.
The book, which tells the story of their frustrating journey through the long-term care system while seeking the best and most appropriate care for their mother following a stroke, is an indispensable guide for all of us who face or may face such care for loved ones and, perhaps, ourselves one day.
Dr. Kane agreed take questions from interested readers and here are his answers:
From Cop Car:
Dr. Kane, what is your experience with the Long-Term Care Ombudsman program that is federally mandated to be in place in each state of the US? Although the ombudsman's jurisdiction is only within state-licensed facilities, I should think that the program would be having a distinct impact.
KANE: The ombudsman program was reviewed by the Institute of Medicine a few years ago. Its performance varies across the country. In many areas it is a useful source for advocacy, but it tends to be reactive rather than proactive. It investigates complaints but it does not often pursue an agenda to change the system.
Does the statement, "...40 percent of all adults in this country who live to age sixty-five will enter a nursing home before they die" include those who use a nursing home in the short term - for a few weeks following surgery, for example?
KANE: You are quite correct. That quote does include short-term, post-hospital stays in nursing homes, which are usually covered by Medicare. They account for at least half of all nursing home admissions today, probably more, but they account for far fewer days of nursing home care.
Comment: The statement, “Because family, not the resident, is often the real customer...." reflects unethical behavior. If the resident is not considered to be the "real customer", their best interests are not being served.
KANE: There are at least two implications to this observation. 1] Many nursing homes and other agencies that serve older people see the familiy as a major target. For better or worse, families do play a big role in decision making. Even when older clients are competent to make choices, many rely on (or confer with) their families. 2] Many older people are not cognitively competent to serve as their own agents; in those cases family members may serve as their agents.
From a reader in her 80s who lives (I believe) in San Francisco:
My question for Dr. Kane is: "What are the ramifications financially of moving from one state to another after becoming disabled?" I am low income and cannot pay for more than 3 months care in a nursing home so would need public assistance.
KANE: The residency rules for Medicaid eligibility (and for financial eligibility) vary from state to state. You need to check on those for the state to which you plan to move.
From Mage who blogs at Day Tripper
My husband and I are taking care of an old friend. Four of us have formed a sort of caretaking committee to take care of our friend Duck. (He stutters and Dick became Duck one day.) One of these friends is ill. One travels. Another lives out of state. My husband has his power of attorney and medical power of attorney, so we are the ones who are there with him every day.
There are millions of elders who, like Duck, have only their Social Security and Medical. Single men or women, gay or straight, who find themselves with Alzheimer’s or dementia also find themselves helplessly unknowing. If Duck hadn't had friends to take him to the hospital when he had a thrombosis in his brain, anything could have happened that day.
And again when he fell later at home, we are all so grateful that he remembered how to use the speed dial on his phone. Again hospitalized, and this time placed in long-term nursing care, he can't be put on the street but is unwanted.
He's so like many others - dapper, dressed perfectly, charming, smiling, and - unable to remember anything that happened during his day. We care. We are there every day. We follow every suggestion and because they don't have a bed for him there, we have been on hold waiting for a final decision for two months.
There are so many like me writing blogs everywhere...
If there are any suggestions on how just friends can help an older friend when dementia or Alzheimer’s has taken their lives away, we would appreciate it. What preparations could be made in advance for the single person who has no family or few friends remaining?
KANE: Duck is very lucky to have friends like you. Indeed, you may be onto something very important, small communes. One answer to avoiding big institutions may be to develop small co-ops (at least among those with enough resources), which are willing to be or to hire caregivers as needed. Presumably such arrangement may also require living in close proximity to share the costs of caregiving.
Preparing for dementia is a task no one (married or single, straight or gay) does very well. Perhaps the best we can hope for is to recognize the symptoms early and take appropriate steps, if the person with dementia is not in denial (a common symptom). Obviously getting all your personal and financial papers in order is a first step. Someone you trust needs to know how to access your resources and has to have legal authority to do so. Ultimately that person may also become your agent for making medical and other decisions.
In general, we often say the best protection against long-term care is to have good friends and family, but that means starting early in life.
I have two questions. First, I too am single without children but still quite young. What can I do to prepare for these circumstances? What other suggestions do you have for single, childless people?
KANE: That is a good but difficult question. Creating enough financial resources to support you is important. The second step is creating a social support system; this is obviously much harder. There may be other people you know in your situation who are willing to form some sort of co-op to pool resources to look after each other. In the future you may want to consider continuing care retirement communities.
Second, what do you suggest as to ways we can influence policy? Is this primarily something we should be speaking to our state legislators or federal legislators about?
KANE: You bet. We have got to find ways to let legislators know that long-term care is important and that people care about it.
It Shouldn’t Be This Way: The Failure of Long-Term Care is available at all online booksellers. It is an honestly-told story of the final three years of Dr. Kane’s and his sister’s mother with some of the best practical information you can find. Particularly useful are the “Lessons” – a recap at the end of each chapter of the most important points you need to know.