Like most of us, Pat Summitt needed a nudge to get real about her health and her plans for her long-term care. Summitt, head coach of the University of Tennessee Lady Vols basketball team, is the winningest NCAA coach ever, men's or women's. She is also, at age 59, newly diagnosed with early-onset Alzheimer's disease. Her son, Tyler, the Washington Post reports, was the one to persuade her she had to face her diagnosis, talk about it and make plans. Her initial reaction to the devastating news had been to deny it and clam up.
Americans are notorious disease-and death-deniers. We cling to the fantasy that death will come quickly and peacefully as we sleep and only when we're age 100 and have earlier taken a brisk walk, read the Wall Street Journal and had a romp in the hay.
It doesn't happen that way.
Chronic illness and end-of-life issues come with infinite difficult decisions about pain control, medical intervention, where to live and who to trust with your care when you need help. Thinking about those issues in advance is a team effort involving loved ones and your family physician. Summitt has her friends, her son and her medical providers. As Tyler Summitt said in the Post interview, "So, as much as we wanted to be Superman and Wonder Woman and take care of things alone, we needed each other."
No one gets to play the lone superhero against a foe as wily as dementia. This reality is a living truth for the five million or so Americans suffering from Alzheimer's, a number that has doubled since 1980 and is expected to go as high as 13.5 million people by 2050. The disease is rare before 60, and its risk rises with age. Some 5 percent of adults ages 65 to 74 have Alzheimer's; nearly half of those older than 85 have the disease.
Well-known personalities like Pat Summitt and singer Glen Campbell, who also has gone public recently about his Alzheimer's diagnosis, help us all by speaking out. Campbell, with the support of his wife, Kim Woollen, is on a farewell tour. In what a Los Angeles Times editorial called a milestone in the fight against Alzheimer's, Campbell aims to show his fans -- with crucial support from his wife -- that life goes on after the diagnosis.
Meantime, a class-action lawsuit by six former players and one current player against the National Football League over its handling of concussion-related injuries illustrates that it's not just Alzheimer's that can lead to dementia. Impaired memory and a lessened quality of life also can result from serious head injuries, such as those suffered by many football players and boxers, as well as mini-strokes, substance abuse and overmedication.
Never Too Early to Plan
So go ahead, folks, and wish for long life with excellent health. But for your own sake and those you love, you also must take steps to plan for your long-term care, if the best case scenario doesn't materialize. It's never too early to start talking about what you want when the time comes and you no longer can go it alone. As difficult as these discussions may be, conduct them while you can, when your health is sound, you have full possession of your memory and control of your faculties and resources. This early discussion, planning and decision-making will prove to be a giant help to you and your family, preserving your quality of life and theirs, and when the time comes, offering you a death with dignity.
The difficult things you must consider include where you want to be -- and where you can afford to be: a troubling truth about America's health care system is that, while Medicare covers acute care, or treatment for a specific disease, it does not cover prolonged long-term care services such as assisted living care, skilled nursing home care or home health services. Medicare has limited provision for skilled nursing home care -- up to 100 days of full or partial coverage if a patient has spent three nights in an acute care hospital and further nursing care is required and prescribed by a doctor. Medicare also covers, with strict rules, some short-term home health care for homebound people who need intermittent, not 24-hour-a-day care. It covers only medical care, and does not cover home assistance with activities such as bathing, dressing or eating. People with Alzheimer's often need the kind of care that Medicare does not cover. Medicaid covers about half the nation's long-term care costs in nursing homes.
Only about 10 percent of Americans 65 and older have private long-term care insurance. While it can be expensive, the premiums are lower for those who are younger, and it might be something to consider while you're working and healthy.
Most people want to stay in their own homes when disability strikes and the new Health Reform Law has a provision to help make that possible. Under the community living assistance and supports act, employees now can opt for voluntary payroll deductions, and after vesting for five years, the benefit will amount to about $50 a day to help pay for nonmedical care to help people remain in their homes. While that sum won't cover all home health needs, it could provide some relief to spouses, adult children and other caretakers.
Your loved ones might welcome that help since most long-term care in the United States is provided by family and friends. It isn't easy. Adult caregivers often must adjust their work schedule or even retire early. It can cost them financially and emotionally, with one survey reporting that 15 percent of caregivers experienced physical or mental problems as a result of duties tending to others.
While there isn't a guaranteed system for providing long-term care, there is a patchwork of services. Every community in America has an Area Agency on Aging to help people find elder services in their area. (Click here to find yours.) In addition, the Los Angeles Department of Aging lists local services for the elderly, including day care for seniors, respite care to give caregivers a break and Alzheimer's day care. The Alzheimer's Association, California Southland Chapter offers resources including where to find adult day care, assisted living, skilled nursing care, home care and transportation options.
Some innovative programs are available in the Los Angeles area. ONEgeneration in Van Nuys, for example, pioneered the idea of intergenerational day care, pairing seniors, including those with Alzheimer's disease, with day care for toddlers. With separate and distinct areas for each age group, elders and tots spend the bulk of their day with peers, but are able to get together for parts of each day for voluntary -- not mandatory -- interaction across generations.
How Your MD Can Help
Your physician has a responsibility for starting to talk with you about all the "what-ifs" ahead for you if you have a chronic illness and as you age. In fact, a doctor who knows you well can be crucial to structuring productive discussions and helping you to understand options. If MDs don't bring up the topic, you can tell them that you're interested in making your wishes known about how you want to live in the event of diminished capacity. They then can explain advance care directives: documents that let you get your wishes down on paper and which can and should be reviewed and revised yearly. They can advise you about filling out the paperwork. They also will help your family members make certain your wishes are followed at the hospital bedside. (To ensure your wishes can be located in a time of need, California has an Advance Directive Registry.)
How questions are worded in advance directives makes a difference. Health care providers too often speak in medical-ese, talking of respirators, resuscitation and feeding tubes. What ordinary folk want to know is: Will I get out of bed again? Will I taste food? Will I recognize my wife? A study found that people are less willing to accept aggressive care if they understand in simple terms that it will leave them severely impaired, functionally or cognitively. So help your doctor keep the discussion real and be explicit about your goals. Talk about your own values and wishes in terms of your real life. And keep the discussion fresh by bringing it up anew at every annual physical.
I'll discuss more in another post about end-of-life discussions and decisions -- a topic that has set off a partisan and political firestorm.
But if a productive dialogue with your physician can help get you thinking about your life, values and wishes -- come what may -- it can end up easing guilt and pain for all concerned in the event of your physical or mental decline.
Meantime, Campbell, with his family's support, will keep performing his music -- which, miraculously, the brain holds onto longer than other memories -- for now for an audience that understands his condition and empathizes with him. Summitt, with the support of her son, her medical team and those understanding Vols, will keep coaching -- with a redefined role and responsibilities shared with her colleagues -- for as long as she can. We'll cheer for them and those NFL players (who already have helped push their league and sport to adopt sounder concussion and head injury guidelines). Their courageous candor, we can only hope, will inspire all of us to think, plan and act for an uncertain future.