Caring for the Caregiver
Life as a Caregiver
By Jeanie Lerche Davis
Reviewed By Michael Smith
Nov. 5, 2001 - Vivian Ames knows too well how life can turn upside down. She was single, in her 30s, living and working in San Francisco. Her folks were in San Diego, hundreds of miles away. She was their only child; they were "older" when she was born.
And as they aged -- as their health deteriorated -- she found herself making tougher and tougher decisions.
First, there were the subtle signs that her mother had Alzheimer's disease -- the growing forgetfulness. "She'd put a coffee cup in the oven," Vivian remembers. "Or she'd go off driving, then not know how to get back." Vivian's father carried the burden of care, doing the cooking, grocery shopping, driving, managing things on the home front.
Then her father was diagnosed with esophageal cancer. Not too long after, she got an SOS phone call from him: "I can't take care of her anymore."
"My father resisted putting her in adult day care," she tells WebMD. "But after we tried it, he realized how much easier it made our lives. She was this high-energy person, almost destructive at that point, where we had to spend so much time watching her. That's the main thing, it gives you a break."
Within months, he passed away. Vivian knew what she had to do.
"I had a one-bedroom apartment in San Francisco," she says. "She took over my bedroom, I took over the sofa bed."
Making Difficult Decisions
It's a scenario playing out all over America. Busy adults with their own careers and families are grappling with a parent's deteriorating health. And very likely, that parent lives hundreds of miles away.
"This is what's facing the baby boom generation," says Kathy Kelly, executive director of the National Caregiver Alliance, an association that focuses on helping families dealing with brain disorders like Alzheimer's disease and stroke. "As women generally live longer than men, the single surviving parent is often mother."
Parkinson's disease, multiple sclerosis, diabetes, Huntington's disease -- they also lead families into the caregiving dilemma. Figuring out what's best for a loved one is not an easy decision, says Kelly. Families face a spectrum of possible care arrangements.
Like Vivian, some bring their loved one into their homes, managing their care the best they can. Others try "long-distance care" -- letting mom stay in her own home, hiring care managers who act as surrogate children, making sure she gets her medications, gets to the doctor, etc.
For others, assisted living centers where people live fairly independently -- or nursing homes that provide complete care -- might be the most viable options.
Some issues help make the best choice clearer. What type of assistance does mom need? Does she need help with daily living activities, like bathing, dressing, getting from the bed to the wheelchair? Or does she need total nursing care? Is the family caregiver available all day or just in the evenings? Can the family transport her to community services, like day care programs? Can they take her to medical appointments?
For some families, the logistics of transporting an elderly parent -- especially during a busy work week -- can be a significant problem, says Kelly.
Every family needs some guidance in figuring it all out, she says. "That's where a case manager can help. It really helps to talk through these things with somebody who understands the range of options," Kelly tells WebMD.
Letting mom stay in her own home -- and managing her care long-distance -- may seem like a good option until you talk with a case manager. "If you're at a distance, you may have to travel more frequently to check in. That extra cost, along with the cost of care, can be significant over time."
Then again, the emotional component of relocation may defy all rational arguments, says Kelly. "Relocating may seem like the best option, but not what the older person wants to choose at that time. You can't discount the emotional aspect. Sometimes it takes a crisis to precipitate a decision."
Figuring Out Finances and Legal Issues
Legal and financial issues must be dealt with early, says Kelly. How do you pay for it all? Who will make decisions about the patient's care when incapacity strikes? Sorting through the legalities is a complicated issue, one that involves -- among other things -- setting up trusts to preserve assets, she tells WebMD. It also means assigning "durable power of attorney" status, which gives legal power to the adult caregiver.
These are difficult to discuss, especially when the family member is still fairly healthy. "People would rather talk about sex than money," Kelly tells WebMD. "It's very difficult to talk about the financial status of an older person while the person is still cognitively intact. But the earlier you can arrange those legal and financial affairs, the better.
"One of the most common myths is that Medicare will cover long-term care," she says. "It won't. Medicare is for acute, short-term hospitalization; it doesn't cover long-term care expenses."
By planning early, the family can make the best use of the person's assets, says Kelly. "Once the person becomes cognitively impaired, there are fewer options."
Long-term care insurance is another option -- one that Vivian discovered too late, she says. Such policies pay for a variety of nursing options, including day care, home care, nursing home care. But to qualify for these plans, the person must be in good shape mentally.
"We looked into it, but unfortunately mother didn't pass the verbal test on the phone," says Vivian. "She couldn't tell them her birth date, even though I was coaching her." While premiums on such policies are "pretty expensive, it would have helped with some of the anxiety about how we were going to deal with financing."
Caring for the Caregiver
Vivian cared for her mom a long time at home -- about seven years. She admits that it wasn't easy. She found a part-time caregiver who came in during afternoons, when her mother wasn't in day care.
"I was very fortunate to find someone who stayed with us the whole time," she tells WebMD. "Mother knew her and felt comfortable with her. I knew I would get a phone call if anything was wrong."
But in the evenings and on weekends, it was Vivian who looked after her mother. The physical demands of it all -- including constantly having to lift her mother from bed to wheelchair -- were very, very difficult. Vivian was afraid it was going to permanently hurt her back.
Emotional burnout is a very real possibility, due to the isolation and physical demands of caregiving, she says.
In fact, 50% of caregivers show symptoms of clinical depression, Kelly tells WebMD. About 60% have health problems. Older caregivers -- spouses -- are the most stressed and depressed, she says, and most likely to die early.
"I had my emotional ups and downs," Vivian says. "Partly it was watching mother deteriorate, and the stress of having to be responsible for someone. I never want to be aware of what goes on in someone's body. You have to be aware of everything. It's overwhelming."
She turned to a nursing home only during the last stages of her mother's illness.
"It makes people wild when I say it, but to me it was very rewarding," she tells WebMD. "It was a chance to give back to the person who gave me life. I have met some wonderful, caring people -- nurses, doctors, social workers -- who really do have people's best interests at heart. And I've ended up changing a lot. It's a sad way to learn about yourself, but it's life."
Today, Vivian moderates an email support group for the National Caregiver Alliance. She's seen it help bring together all sorts of people, all in the same boat. "We give tips, support, a pat on the back for having done something. Someone says, 'I got away for three days.' We say, 'Bravo to you.' It's a community of people out there who are all going through the same thing."
She's heartened by the growing numbers of community services to help such families. She urges them to seek help, even if it goes against their first instincts.
"People say, 'we're strong, we'll do it ourselves,'" she says. "But even if you have a big family, you are eventually going to need outside help.'
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