Caregivers get no holiday, though friends, family help
By Mary Brophy Marcus, USA TODAY
Something about Carol Blackwell is reminiscent of the main character from this year's film Miss Pettigrew Lives for a Day. Not because she solves her and everyone else's relationship problems in 24 hours. But like Miss Guinevere Pettigrew, Carol focuses intently on the present and in subtle, loving ways makes everyone around her feel all right at the end of the day.
Carol's husband, Bob, 66, a retired CIA executive, was diagnosed with Alzheimer's disease two years ago. After the initial shock, Carol says, she had no other choice than to keep a firm grip on reality. That meant pursuing health solutions for Bob and keeping family happiness and security thriving.
That doesn't mean it always has been easy, or not scary and frustrating at times, she acknowledges. "It's really hard to put into words, but I've come to a place where I think I'll be OK."
Carol doesn't think of herself as Bob's caregiver, because he leads an active life. But by definition she is one of about 50 million Americans who care for a family member or friend with a chronic or disabling health condition: a spouse with Alzheimer's, a sibling with a traumatic war injury, an aging parent, a child with physical or mental challenges.
And though the holidays add an extra element of stress for many caregivers, Carol is relying on a recipe of being proactive, leaning on family and friends, staying physically well and advocating for Alzheimer's research and education to stay buoyed this season.
Those who study the needs of caregivers say keeping a focus on what you can do, celebrating in a low-key fashion and relying on a web of friends and family for support will help many navigate what's supposed to be — and still can be — a sacred, joyful time of year.
About 60% of family caregivers are women, according to the National Alliance for Caregiving and the AARP. While the typical caregiver is a woman in her mid-40s, 1.4 million are children ages 8 to 18. About 30% of family caregivers are 65 or older, according to the U.S. Department of Health and Human Services.
The Blackwells have their financial paperwork, such as wills and retirement accounts, in order, but many families do not, says Suzanne Mintz, president and co-founder of the National Family Caregivers Association. Mintz says sitting down and going over future plans and money matters can be a gift to any family's primary caregiver, lightening her emotional and financial load.
"It really is a good time to talk about these issues," Mintz says. "Everybody's together. It's the end of one year and the beginning of another. Families can draw together and say, 'We're all in this together.' "
This approach may not help families who have never been close, she says. But discussing living wills, powers of attorney, DNRs, long-term care — whatever hasn't been laid out on the table — and divvying up jobs among relatives is imperative.
"You don't want to wait. It may be hard now, but the point is it's going to be a whole lot harder if you don't do it at all," Mintz says.
Caregivers, whose energy sources are already tapped, shouldn't feel pressed to re-create a Norman Rockwell holiday or to pull out all the stops decorating and throwing parties the way they always have in the past, says Jill Brink, who counsels family caregivers at the Alzheimer's Association's Southland Chapter in Los Angeles.
"Keep it light and flexible. Prioritize, scale back, pick events and traditions that will be most meaningful to you, like a quiet religious service or a small family get-together," she says.
Brink recommends choosing only one or two events. Caregivers of Alzheimer's patients may want to avoid big holiday bashes because patients are sometimes confused and agitated by bright lights and noise.
She says that if you do attend a party, let good friends know ahead that your relative is having memory problems so they won't be surprised when Uncle Bob or Grandma doesn't recognize them. She also suggests minimizing decorations that may confuse dementia patients into thinking they are no longer in their own home.
"Even a glittering tree or a little jingling, light-up toy can cause confusion," Brink says. If you have a tree, place it in a room with a door that can be closed, she says. On the other hand, some families take comfort in traditions and should follow them as long as they don't add stress.
The Blackwells are sticking with their usual holiday routine. "We buy a tree at the local tree place, and we'll put it up and decorate the house," Carol says. "Our grandkids are coming, and we'll sing at church."
But they'll tweak their plan when they head out to Colorado to ski in January. Carol says that while in years past Bob would have gone off with the guys to ski, this year he and she will stick together. "He might not get lost at all if we separate. … I'm not sure we should take that chance, but I hate to keep him from doing something he may be able to do perfectly fine."
But unlike Carol, some caregivers opt out of everything at holiday time. "There's a lot of loneliness," Brink says. Support groups can be a haven. "They help caregivers work through and normalize life by listening to others who are going through the exact same thing."
Tony Pesare of Orange City, Fla., who was his wife's primary caregiver and was able to keep her at home until three weeks before she died in July, says he and his sons have benefited from the counseling services at their physician's office. He says becoming active with his local Alzheimer's Association chapter has helped him move forward, as well.
He recently organized a garage sale and raised $200 for the group, and he is now a spokesman for the association. "I want to go to Washington and do some more lobbying. If you don't keep it out in the public eye, there won't be progress with this disease," Pesare, 51, says.
Family members not directly involved in caregiving may want to focus on the caregiver's needs, Mintz says. "Everybody asks, 'How's John?' or 'How's Dad?' They don't ask how the family caregivers are. They're the invisible ones. The research shows their health is very much at risk."
Research shows caregivers have high rates of depression.
CBS sportscaster Jim Nantz, who recently wrote a book, Always By My Side, about his father, who had Alzheimer's, says his parents' 50th wedding anniversary occurred during the 2002 holiday season. His father was in a care facility at that point and unaware of the date, but Nantz and his sister, Nancy, knew the day could be a blue one for their mother.
"We felt we could not let the day go by unrecognized," Nantz says. They flew their mother from her home in Houston to New York City and put her up in a presidential hotel suite, and she watched the Macy's Thanksgiving Day parade live.
"We had a beautiful dinner with Champagne, and we gave her flowers from Dad. I think she needed to be given a heavy dose of love to mark this special occasion," Nantz says. "Obviously we were all there with a heavy heart, but I think for my mom it would have been far worse to ignore it."
So what's Carol Blackwell tucking under the tree for Bob this year? Other than Wii Music (because he has always secretly wanted to be a conductor, and besides, it's good for him to play games), she says the best gift she can give him doesn't come gift-wrapped: "His personhood. I don't want to become his mother or his jailer," she says.
"It's all about that balance of making sure Bob's OK but not doing more than he needs at this point, not overdoing and taking away his personhood."