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Saturday, February 04, 2012
Special Report: January 2008
A Necessary Heartbreak
When the best solution for a loved one is to let go
Story by Judith Horstman
Until her father showed up on her doorstep on Halloween 2006, Heather Scheblein thought he was aging pretty well.
He was only 75 and had been living independently and alone in San Luis Obispo for the past five years. Then he had a falling out with a daughter who lived nearby. It was agreed he would come north and stay temporarily with Heather and her husband, Bob, in Shingle Springs.
He insisted on driving up from San Luis Obispo himself. “But it took him more than 13 hours to make the five-hour drive,” Heather says. “He brought the possessions he thought were most important: his nightstand, a folding chair, his golf clubs and a shaving kit. That was it.
“And we knew then that something was terribly wrong,” she says. Her father had dementia, and it was progressing.
Heather and Bob were stunned. Co-owners of the River City Health Care & Pharmacy, each has more than 25 years experience in healthcare-related businesses. If they couldn’t see this coming, who could? They were aware of “just about all the health issues one could have,” Heather says.
In hindsight, Heather says, the signs of dementia were there. But it was difficult to sort out. Like many families, there was geographic distance. The couple visited four or five times a year, and things seemed okay. Her father made some financial and health decisions that concerned her, but “he wouldn’t let us meddle in his issues, including his finance issues,” she says. “We weren’t aware of it until the dementia was full-blown, and he landed in our laps.”
The months that followed became an ordeal for all as the dementia advanced. Both Schebleins work full time. Heather would call several times a day to talk to her dad, but soon she couldn’t leave him home alone. He refused to go to senior day care; some days he refused to get out of bed at all. More and more, it was “like caring for a two-year-old,” she says.
Issues arose that are familiar to those who have also struggled with the care of an aging parent. Family roles and histories resurfaced between parent and child and also among the five siblings. There were areas of agreement, disagreement and — even with the best of intentions — strong emotions of sorrow, anger, resentment, frustration and guilt.
Heather felt increasingly responsible and alone. In-home caregivers charged $20 to $25 an hour, which they could not afford. The couple’s marriage began to suffer. “We have a very strong 30-year marriage. We’ve never had major conflicts,” Heather says. “This was the first time I thought my husband might leave — he could not cope with my pain, and could not fix it.”
Nor could she fix her father. It was time to consider assisted living or other residential care.
But this brought more problems and issues. Money was a major concern, as it is for most families. Neither in-home caregivers nor assisted living were covered by his insurance. Medicare covers only short-term skilled-nursing care. Medicaid does not pay for home care or assisted living in most states, and covers nursing homes costs only after a person’s assets are around $4,000 or less.
Finding a suitable place, regardless of cost, was difficult. From their work in healthcare businesses, the Schebleins had seen “the worst of the worst” in assisted living and skilled-nursing care. Fortunately, one of Heather’s sisters lives Colorado — one of only three states Heather knows of that has Medicaid coverage for assisted living. She found a small assisted living center in a rural area, and they moved their father there last year.
It was a difficult decision. “I had to have it settled in my mind and my heart that this was the right thing,” she says. “I felt so guilty. About lying to him. About not knowing sooner that he was in trouble. Guilt that we could not keep him at home. That I didn’t step in earlier when I knew there was something wrong.”
Yet her father is happy in assisted living. “Heather’s dad is getting better care 24/7 than we could give him,” says Bob. “There are no villains here.”
Heather felt completely alone. But just about everyone who has living parents will face similar issues, says Barbara Gillogly, chair of the Gerontology Department at American River College. And all of us will someday need help as well.
“There are four kinds of people: those who are caregivers, those who have been caregivers, those who will be caregivers and those who will need care,” Gillogly says, quoting Rosalind Carter. “That’s everybody.”
She should know: She has helped her own parents through this transition, with all of its complications and emotions.
“Even if you are in the health profession, it’s different when it’s your own parents,” says Mark Robinson, a social worker and education core leader at the UC Davis Center for Healthy Aging. Robinson has also ushered a parent and step-parent through these changes.
It’s difficult to know when it is time to step in. Many people live independently and successfully well into their 90s or beyond. Robinson’s mother is in her 80s and still driving. Heather’s father’s sister is in her 80s and travels alone. Others, like their respective fathers, begin failing in their mid-70s.
No doubt, one child can’t take on this challenge alone. This is a trying time for everyone involved.
“It’s a huge decision. Unfortunately, what usually happens is families wait too long — someone falls and breaks a hip or arm,” says Chris Schoonveld, marketing director for Aegis Assisted Living in Carmichael. She says she tries to reassure caregivers by empowering them with information — and keeping a box of Kleenex close by.
“I ask them what they’re worried about. That’s usually when they start to cry,” she says. “I try to offer them enough information to make them feel better, to ease their pain.” She offers the caregivers both traditional literature and online resources. Then, when it’s time to make a move, the home offers multiple support groups for caregivers — from Alzheimer’s to hospice groups.
“You want the caregivers to be happy because their loved ones will be living there,” she says. “We want to know what we can do to make their lives easier.”
Gillogly says this strain expressed by adult children shouldn’t be called guilt. Guilt means you do something you know is wrong, but you do it anyway. “With caregivers, it should be termed regret. You cannot be everything to everybody all the time.”
The role reversal itself can be very emotional. The basic roles never go away: They may be childlike, but they are still your parent, and you are still a child even though you are in control. “Even though I have a Ph.D. after my name, I’m still the kid,” Gillogly says.
Your parent may not be grateful, or even very nice. They may complain about just about everything. Don’t take it personally, say the experts. It has more to do with the situation than you. “It’s very difficult for any of us to give up any control over our lives — and all of us have to do it eventually,” Gillogly says. “If parents don’t appear to be grateful, it’s because of that fear. They don’t like it. You’re not going to like it.”
To help negotiate this journey, seek support from family, friends and professionals, says Heather. “Ask for help, and more importantly, accept it. Don’t try to carry it all yourself, whether it be a physical task or an emotional burden.”
Talk with your parents, your siblings and anyone else involved. In the best cases, siblings can work together, but it may not be easy. Try to put yourself in the other person’s shoes.
“This kind of stress will tear your marriage apart if you don’t take time to renew,” Heather says.
The bottom line for caregivers, says Gillogly, is to take care of yourself first. “It has nothing to do with selfishness. You are the foundation. If you get sick or die, the whole house of cards falls down.” This is a hard sell for caregivers, she says, but essential; one-third to 40 percent of caregivers will die before the person they are caring for.
And, ultimately, let go of expectations. “Let the past go. Try to live in the moment. And accept the inevitable,” Heather says.
Children of aging parents can use these experiences to prepare for their own old age, experts say. Among the best gifts you can give your children: talk to them about finances, prepare a will and an advanced health directive, and put your wishes in writing.
The next great gift is to take care of yourself. There’s a lot of talk about how the influx of aging and ailing baby boomers will strain the healthcare system, says Robinson. But the Medicare database suggests half of recipients are healthy, and that population is growing, he says.
There’s a saying that Robinson doesn’t like much, and it goes: “Growing old is not for sissies.”
“Well,” he says, “neither is dying young. Growing old is the goal. Rather than think about geriatricians, think about sports medicine. Adjust and adapt.”
What Kind of Housing Arrangement Will Your Family Need?
• Retirement community: Housing communities that limit ownership to seniors — typically residents 55 years or older — with no children living in the home.
• Retirement apartment: Same requirements as above. Some may offer assistance from federal Housing and Urban Development programs.
• Independent living facility: Residents can live here as long as they don’t require assistance from the facility. If the resident needs assistance with care, he or she may live with a private caregiver or In-Home Support Services worker. This housing can be paid for with personal funds, long-term care insurance and state programs, among others.
• Assisted living facility: A long-term option for residents that need a facility’s assistance for day-to-day living needs, such as bathing, dressing and taking medication. This option is for residents who do not need the 24-hour care of skilled nurses. This allows the resident to stay in a friendlier environment for longer, and for less money. Insurance is available to pay for this service.
• Residential care facilities for the elderly: Same as assisted living level of care. Outside agencies can also provide private duty caregivers or skilled home-care services.
• Board and care homes: Same as assisted living level of care, but also caters to younger disabled residents. Outside agencies can provide private duty caregivers, or skilled home care services.
UC Davis study: barriers to dementia care
The healthcare system has built-in limitations that prevent doctors from giving the best care for dementia, according to a recent study released by the UC Davis Health System. Time and reimbursement are the primary barriers for doctors to give the highest quality of care.
Overwhelming workloads and unfamiliarity with dementia-related problems also inhibited some physicians’ desire to see patients with dementia.
The study was based on interviews with 40 primary care physicians in Northern California. One limitation of the study, however, is that it relied on the physicians’ perspectives rather than families of dementia patients.
Limitations in the healthcare system can lead to delayed detection, causing families to become reactive instead of proactive — including a reliance on drug treatment instead of psychosocial approaches.
Physicians interviewed say it’s difficult to care for patients suspected of dementia with a standard 15-minute appointment. This lack of time and the subsequent failure to assess behavioral problems could delay detection and management until a time of crisis.
One physician interviewed says reactive care also contributes to family burnout and, ultimately, to the patient’s institutionalization.
Despite the bad news, there are steps primary care physicians can take to help patients and their families.
Better education and support for families can help them to become more proactive in making requests for appropriate treatments and specialists. In larger practices, dementia-care teams could be established to help manage more complicated cases.
Physicians often omit simple interventions that may help families find help for behavioral issues, such as a referral to the local Alzheimer’s Association or the National Institute on Aging’s Alzheimer’s Disease Education and Referral Center at 800.438.4380.
The study was funded by the National Institute on Aging and the UC Davis Alzheimer’s Disease Center, which conducts research and coordinates care for patients diagnosed with the disease.
