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As one parental care-giver puts it, “There were phone calls at all hours requiring one of two responses: ‘I’ll take care of it’ or ‘I’m on my way.’ It was the hardest thing I’ve ever done.” And, it cost her her marriage, as well.
The defining characteristic of the baby boom generation might well be its size, but eldercare is rapidly becoming its biggest challenge, both for the generation’s parents and for its members.
It is yet another baby-boom ripple that has become a tsunami. As the largest generation in American history nears 70, brags on grandkids, cashes in on Medicare and Social Security, downsizes and discovers new hobbies, a new reality is settling in. Millions of boomers are caught in the eldercare vice, taking care of aging and infirm parents who have, for one reason or another, lost self-sufficiency; and/or on the other end, being the recipient of that care.
Many relish the role of caregiver, others see it only as a responsibility of “family.” Some resent it. Siblings often quarrel and sue over the estate. One sibling will often be put in the position of doing the bulk of the work.
Raw statistics (mostly from AARP*) tell the story of a defining moment of a generation:
Twenty-nine percent of the adult population takes care of someone who is old, ill or disabled. That’s 65.7 million caretakers.
Of those cared for, 43.5 million are older than 50 and 14.9 million have Alzheimer’s Disease.
The value of the care is $450 billion a year, up a third in the five years before the study was completed in 2012.
Most of the care-givers (66 percent) are women and their average age is 48. The number of men in the role of care-giver is increasing.
Women do the hard work (toilet, bath, dressing), while men often concern themselves with the finances and the like. Women put 22 hours a week into care on average and men 17.4.
“Goals of care mean different things to different people,” says Dr. Brian Unwin, section chief in geriatric and palliative care services at Carilion Clinic. “Some patients want to live to see a grandson graduate; others want [to employ] every technological advance until they are brain dead.”
It is, says Unwin, the quandary of late life: “We don’t do dying well, expecting cure instead of care.” And it is a family expectation, sometimes—often—divided among relatives, depending on their closeness, goals and philosophies.
It is not always about the division of money upon death, though it often is. Recent examinations by the National Institute of Aging and the University of Michigan’s Health and Retirement Study show that Americans who die between 65 and 74 have a median net worth of $205,000, 80 percent of that in their homes.
“When people die with estates, there is often a knife fight,” says Unwin. But not many die with estates. Medical debt eats up a lot of the net worth: People spend $38,000 out of pocket on health care in the last five years and a fourth of us spend all of our money during that period. “It’s more if you’re single,” says Unwin, “and the government doesn’t pay for dementia.”
“It’s never easy,” says Kathy Wolford, a social worker and practice manager at Carilion’s Center for Healthy Aging and Infectious Disease Clinic.
If there is no specific health directive, says Unwin, “in the middle of all that stuff, the family is asked to make decisions. The clinician tries to sort it out and advise on where to go with [treatment and decisions]. Often the treatment [alternatives are] very sensitive.”
Family members are frequently left with “the say,” says Wolford. An advance directive and some intelligent planning can help, but those don’t necessarily deal directly with family dynamics which, says Wolford, “are sometimes driven by guilt; sometimes making sure I get my part” of the estate. Ultimately, she says, “it is rooted in patient autonomy.
“It is not so much nerve-wracking as heart-wrenching,” says Wolford.
“When money is involved, invariably the most bitter and awful [disputes arise]. But that is in the minority,” Unwin says. “Every family is different, but in America we tend to plan for life—the good times—and not for the bad times. We prepare pre-natal by painting rooms, buying clothing; we plan for vacations. Do Americans plan to retire, plan for bad times, how life will end? No.”
“Equitable is not always equal,” says Mark Dellinger of the Roanoke law firm of Rhodes, Butler & Dellinger, which specializes in family law. “People attach love to inheritance but sometimes one child makes a much greater contribution to the life of the parent in the years close to the time of the parent’s death.
“ The parent may love the child who lives in Kansas City and sees the parent one time a year the same as the child who lives down the street. However, the time and attention the child living in town provides dwarfs that provided by the out-of-town child. Should the child in town inherit more? … If a parent is going to leave less in a will or trust to one child than another, I advise clients to write a letter to the child who is receiving less explaining why … and reiterating that it has nothing to do with love.”
The will is crucial. “There is a growing consumerism attached to wills and powers of attorney,” says Dellinger. “Non-lawyers want to make a profit and so they offer ‘products’ at a cheaper rate than what the lawyer’s price may be.” Most often, says Dellinger, you get what you pay for.
Indecision and suspicion are important stressors, Dellinger says. A well-advised parent is prepared to tell her children what she would like to see happen prior to the events that cause the stress, he says.
“I think the families most likely to have legal difficulties are those that do not take the time to think through the ‘what ifs,’” Dellinger stresses. “… It is not fun to sit around considering your death or incapacity. However, it is a gift to those serving under a power of attorney or handling an estate.”
Herewith are some stories from the Roanoke Valley of those who have cared for parents in their final years. As you might imagine, the diversity is wide ranging.