2016-06-30
For years, my brother John and I have had eerily similar nightmares starring our older sister, Sue. One began when we were kids. We dream that we're riding in our old family car, a 1954 Chevy wagon. Sue is behind the wheel.

We're terrified. Sue is cerebral palsied. She can't drive. We go over a cliff.

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  • We can laugh now about that dark dream because it won't come true. But recently, we've each had a scary new dream involving Sue. This one isn't funny because it could happen. In this dream, Sue gets sick and needs costly treatment. The modest estate Dad left for her runs out, leaving John, with whom she lives, homeless.

    We're not the only people having such nightmares. My brother is one of millions of caretakers who voluntarily look after sick, elderly, or disabled family members.

    A recent study by the National Family Caregiving Association (NFCA) found that there are 54 million caregivers in the U.S. Follow the math: 54 million caregivers plus an equal number of care recipients means 108 million Americans either give or receive care. That  staggering sum encompasses one in three Americans.

    As the U.S. population ages, care recipients are increasingly likely to be aging adult relatives like Sue, who is 63. Most of the people providing care are family members like John, who, at 51, is no kid himself.

    Like many family caretakers, John essentially has two jobs. He earns his living as a salesman and display decorator at the Winterthur Museum Store in Wilmington, Del., and he spends over 20 hours each week helping Sue. When she gets physical therapy, John gives more than 30 weekly hours to Sue's care.

    Although his duties aren't hard labor, their cumulative effects are draining and isolating. When I called John on his birthday last August 15, he was exhausted. For the first time in the five years he's been Sue's primary caregiver, John wasn't too polite to say so. "I'm at the end of my rope," he admitted. "You don’t know how demanding my life is."

    I knew he was often frazzled, sure, but he was right: I never dwelled on his plight; doing so would have made me feel guilty. So until his call awakened me, I ignored the problem. Now I had to help, or John might burn out.

    From August to November, my wife, Kit, and I went to Delaware several times. We did small chores, easing John’s grind a bit. We shopped for groceries and took Sue to therapy and the library. I puttered around the house. Kit worked on family finances and took John on an antiquing jaunt. We rented a couple of movies, cooked some meals, and hung out together.

    John's chores never end. Fortunately, Sue isn't sick and doesn't need special nursing--yet. Her congenital condition is not an illness. Cerebral palsy, however, makes her susceptible to accident and illness; it can't be cured and worsens over time. She needs help with simple daily tasks like shopping, cooking, cleaning, and taking medication.

    There's nothing technical about John's work. It just takes commitment. John has devoted hours, weeks, and months to the family for 11 years. For six years, he cared for our father, Bert, too. Along the way, John has lost a dream of buying his own house and reduced his management ambitions.

    As hard as he works, John actually devotes fewer weekly hours to his good deeds than most caregivers. NFCA reports that more than 30 million Americans spend over 40 hours a week caring for dependent loved ones. (Check www.nfcacares.org for data and good tips about how to cope.) For givers whose loved ones have serious problems like Alzheimer's disease, spinal injury, pronounced retardation, or severe breathing disorders, caregiving is virtually constant.

    For some caregivers, merely arranging a night at the movies can be as hard as planning a two-week vacation is for an unencumbered person. Caregivers suffer frustration, fatigue, and depression. It is a lonely, unremitting grind.


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  • No One Reimburses Caregivers
    Caregivers save the nation an incalculable amount of money. If all these generous people stopped their good deeds tomorrow, the government would be overwhelmed. Millions of people would flood hospitals and long-term facilities. Health care systems would collapse overnight; costs would be astronomical.

    Caregiving is a huge unknown industry, as big as the most stupendous feats of government. Consider: The Persian Gulf War cost the U.S. and its allies roughly $61 billion. However, in budget terms, all those missiles, bombs, tanks, ships, and troops cost a fraction of the annual expense of caregiving, which--together with home nursing--was estimated to be worth more than $200 billion in 1997. Given our aging boomer-heavy population, that figure will grow further--yet this bloodless struggle is waged year after year with no outlays to caregivers.

    Although this labor leaves no battlefield casualties, it takes a toll. Millions of helpers voluntarily limit their personal independence. Their careers are stunted. Leisure is constricted. Caregivers voluntarily tether themselves to their loved ones. Most family caregivers are between 35 and 64 years old, prime earning years: Thus this tender work shrinks financial well-being.

    Caregiving could be the biggest charitable donation of them all, but neither the nation's accounting policies nor its tax rolls consider these vast donations of time, love, and effort tax deductible. You can deduct medicine, therapy, and doctor's visits, of course, but you can't deduct your emotional gifts, your time, or the income you forego.

    Sue Does All She Can, Too
    Fortunately, our sister, the recipient of John's tender ministrations, is sunny, quick to laugh, and extravagantly grateful. She has much for which she's thankful, if you ignore the trick fate played on her at birth.

    For one thing, she's glad for John's unstinting help. Without him to shop, cook, launder, clean, and drive, she couldn't live on her own. (NFCA reports that men like John are increasingly likely to handle caregiving chores, but women still do the bulk of the work.) John also manages their finances with Kit's help. He handles Sue's health care and her medication. He arranges physical therapy to help Sue stave off rigidity.

    Sue, who is 63, can vacuum and dust. She can dress and feed herself. A wonderful device called a Rollator--www.starlift.com/rollator.htm--mechanically helps her move about.  Weather allowing, she pushes her Rollator twice daily around her suburban streets, chatting with anyone in earshot. Her neighbors are patient. It isn't easy to understand Sue because her speech is garbled (she's spastic).

    John and Sue don't go to church regularly. Weekly attendance would be just one more chore for John. Yet the love he gives Sue every day is grounded in the Presbyterianism our mom taught us. Presbyterians accept their fates with Scots-Irish stoicism. As did our parents, John helps Sue unassumingly, knowing virtuous acts must be their own rewards.

    Over the years, John and Sue received help from next-door neighbors Cerd and Jesse Marsh, long-time members of our own mom's Westminster Presbyterian Church. However, the Marshes just sold their house and are moving to a retirement community. The newcomers won't remember Sue as she was--a sweet, cheerful little girl--as the Marshes do.

     


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  • The care John gives Sue reminds us that charity not only begins at home; sometimes it ends there, too, imperceptible to the outside world, but noble nonetheless. 

    If You Think That's Bad, It Could Be Worse.
    As trying as his caregiving has always been, John faces an even bleaker prospect. If Sue gets sick, forcing her into either a group home or long-term hospitalization, John could end up without a place to live in.

    In an effort to ensure his daughter's independence, Dad left his estate--a nice house and some investments--in a trust for Sue's welfare, naming John and me trustees.  John can live with Sue as long as he cares for her. When she goes into a facility, the house and her small trust fund will probably go with her.

    Inadvertently, Dad created a perverse situation. Intending to secure Sue's future, he made it more precarious. The rawboned son of Swedish immigrants, Dad was self-sufficient to a fault. Devoted to his daughter, physically tough, he seemed capable of caring for Sue forever. Like most mortals, he failed to foresee his decline. As his health deteriorated, he wasn't capable of revisiting his will or acknowledging his growing debt to John. Nor did he foresee all the consequences of leaving everything to Sue.

    His intentions were clear: Help Sue. That's what we still wish to do. (In-home care provides a loved one with comfortable surroundings and familial help.) But Dad's will diminished our ability to draw government resources on Sue's behalf, limited our capacity to use our employers' benefit packages, and restricted our maneuvering room. Because she has her own assets, Sue doesn't qualify for Medicaid, nor can we claim her as a dependent or cover her through our health plans.

    Keeping Sue independent costs over $20,000 a year. Social Security pays Sue about $8,000 yearly, and investments provide her another $6,000. So John, Kit, and I dig into our pockets for more than $6,000 annually to keep this two-person unit going.

    What We're Doing Now
    Unless we find a solution for the legal bind, John is, um, screwed. After years of toil for which he's taken no pay and from which he's taken less than a month of vacation, John could end up with nothing except his clothes, furniture, and a small IRA.

    If--no, make that when Sue goes into a group home or long-term facility, the cost will be horrific. Residential care runs from $30,000 to $100,000 a year, so Dad's trust could disappear fast--leaving John without a house.

    We've learned about a nonprofit organization called Delaware Care Plan (DCP) that may help with Sue's transition. That potential help will come at a cost. John might be able to hang on to the house through DCP--that isn't clear--but the investments that keep the house running would be absorbed by the organization.

    We're undecided about what to do. We're not quite paralyzed by doubt, but so far, our prayers have delivered no miracles. We were buoyed to read that Sen. Barbara Boxer is considering legislation that would offer caregivers some benefits, but passage seems remote.

    Remember those nightly dreams turned into daytime nightmares? We're keeping them at bay for now, but they're lurking. John and Sue rely on their Calvinist roots. While we hope for celestial aid, we're doing what we can on terra firma. For me, that means thanking my brother for his kindness--compassion verging on heroism.

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