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The brain changes as we age, deep memories lingering and others coming and going with frustrating unpredictability. Experiencing such changes is particularly unsettling, and at times tragic, for people with the memory disorders that magnify and compound changes in the aging brain. And nobody knows this better than the loved ones who care for them, experiencing these frustrations vicariously, and protectively.
Los Altos resident Judith London, Ph.D., a psychologist and author who specializes in Alzheimer’s and other dementias, has paid increasing attention to the caregivers who watch over aging patients with cognitive impairment.
Approximately 80 percent of people with Alzheimer’s are cared for at home, so unpaid family members make up a huge corps of volunteer, untrained caregivers thrust into challenging duty. And the work doesn’t stop when a loved one moves to a live-in facility.
“Just because they’ve placed the person in an Alzheimer’s residence doesn’t mean they don’t still have that responsibility – caregiving is forever while that person is in your life,” London said. “Caregivers don’t realize that they’re not alone. When you’re in a support group, you learn you’d better relax. If you get sick, who’ll take care of your loved one?”
Patty (last name withheld on request) joined a support group London leads in the area. As the primary caregiver for her mother, who has Alzheimer’s, Patty struggles to manage all the elements of her responsibility.
“A lot of my experiences have been very negative,” she said regretfully. “It’s very difficult as a caretaker to feel good about the situation and why you can’t make it better or go right.”
A former nurse, Patty transferred her mom among different facilities four times as problems arose. Along the way, she’s encountered a laundry list of challenges – and potential resources – that caregivers should plan for and seek out.
“My mother was running her own home – the only sign (of illness) was the bills and taxes,” Patty said.
But over the years, paperwork and identity theft built up to become an overwhelming problem.
“It’s a beautiful sunny day and I feel guilty for not being over there visiting. But I’m here – every room in my house is stacks of paper,” she said.
Planning ahead within a family to set up living wills, trusts, powers of attorney and conservatorships is a key piece of advice caregivers offer to the next generation of family volunteers. Learn about it now, from elder law attorneys or at a caregiver’s conference, before you need it.
“You need to plan ahead, while your loved one can tell you what their wishes are,” London said.
Prepare to assume financial responsibility and protect a loved one’s financial information before a crisis hits. And ask parents or spouses to prepare an advance directive – who should serve as spokesperson for them, and whether they want to be consulted on decisions even if they become too ill to answer.
“Those are the two major things they need to have legally in place,” London said, adding a less legalistic thought, too. “From the beginning, build in rest for yourself. It’s hard for people to ask for help.”
Lenny Park, who directs the day program for seniors at Avenidas Rose Kleiner Center in Mountain View, sees caregivers who are embarrassed that they need help or worried whether it is the right time to seek it out. What they realize, she said, is that support services like a day program can add value for all parties involved.
“One of them really emphasized how it gave her husband something his that was in his life now that he was no longer able to work. If he weren’t in a program, he would feel like a lost soul and lonely and just kind of lethargic,” Park said. “It’s not like they’re doing something to their loved one – they’re doing something for their loved one.”
Connect and delegate
“There’s a tendency for caregivers to want to be in complete control,” said London, who advocates connecting with others coping with the same situation, online or in person. “In a support group, everybody knows about a somebody – the support group becomes your network.”
Awareness about the hard work of caregiving must reach beyond the adult child or spouse at the center of the task. Other family members can think about volunteering once a month to step up and give the primary caregiver a chance to take a walk or get a cup of coffee with a friend. And community groups like trained volunteers at local churches can provide a grassroots resource for respite, London noted.
Patty hired a geriatric care manager to help her negotiate issues with her mom’s living facility, and she hired a skilled nurse to travel with her when they flew across country to move her mother to the Bay Area.
Learning to ask for help was key. Patty found, for instance, that American Airlines had a special service representative who arranged to seat Patty’s mom near a bathroom and between vacant seats, so she could elevate an injured leg.
At Rose Kleiner Center, support for caregivers is built into the programming. Support groups meet twice a month for family caregivers to trade notes and get information from staffers. Last month the center convened a panel of experienced family caregivers to talk about their experiences.
“There’s a lot of give and take, and actually people end up helping each other more than the professionals, even,” said Park, adding that they share their fears, and plans for the future, as well as tips on how to communicate effectively as memory impairment progresses.
Feel your feelings
“If you’ve ever done any caregiving – the closer the relationship, the more angry and aggravated you get,” London noted from her own experience caring for loved ones. “In the case of dementia of any type, they’re not always easy to deal with, even if they’re easygoing people.”
For caregivers who are supposed to be the stoic, reliable figure, stress can manifest as impatience and frustration. And delegating can be terribly difficult when you’re protective of your loved one.
“I’m not really as good as I could be with my mom, because now I don’t really trust anybody,” Patty said.
Years of being let down by paid caregivers, and her mother’s vulnerability to theft and neglect, make this a rational fear. Yet Patty acknowledged the downside to her hypervigilance.
“My health has really taken a turn for the worse worrying about this,” Patty admitted.
But even during a time of great trial, she’s been finding small ways to watch out for herself. including walking in the pool to get exercise. And she’s even made the most of one side-effect of all the stress.
“I lay here worrying, and can’t sleep. If I haven’t slept, I get up, fix a big bowl of oatmeal, then I go back to bed and I eat the oatmeal and I read the paper – that’s an escape for me,” Patty said.
She’s also started seeing a counselor to seek balance in her life.
“Acknowledge your feelings – you’re human,” London said. “You need to tell your feelings and not act them out on the person.”
But London pointed out that there are good feelings, too – moments when people find new levels of love and understanding in the relationship, even as it changes. Patty speaks glowingly about her mother’s watercolor painting, and the math acumen that caused her to sweep bingo games at a care facility.
“People who have this kind of illness still have so many kinds of thoughts left in their brains,” London said. “The feelings of love and surprise that you experience might in fact be similar for the person who has Alzheimer’s – ask them, are you feeling this?”
London is writing a book – “Support for Alzheimer’s Caregivers: The Unsung Heroes” (forthcoming, 2012) – based on stories she’s picked up over the years about interactions between caregivers and the person in their life, canvassing the kinds of frustration – and support – that people find.
“My goal is not to have a despairing book, but a book of inspiration and hope for people,” she said.
What to ask and do when evaluating care facilities for a loved one
• What training do you give staff caregivers specific to Alzheimer’s?
• What activities and activity therapists do you provide?
• What safe, outdoor spaces are available to residents?
• Visit the unit and see what is happening: What are residents doing? What is the body language of caregivers?
• Get the scoop on the facility/service from others in a caregiver support group, online or in person.
For more information on London’s book and to read her blog, visit drjudithlondon.wordpress.com.
The Alzheimer’s Association’s website at alz.org features a caregiver section that includes resources, coping strategies and an online community.
WebMD.com’s Alzheimer’s guide includes caregiver resources.
Avenidas Rose Kleiner Center is located at 270 Escuela Ave. in Mountain View. For more information, call 289-5499.