Susan Spiker could never have imagined that at age 27, with a busy married life and two young sons, she would simultaneously become a caregiver to her mother. But six years ago, at age 61, Betty Spiker was diagnosed with Alzheimer's disease (AD).
"For quite a while after my mother's diagnosis, I think I was in denial," says Spiker, who was 33 when we spoke, in Atlanta, Georgia. "For a year or so, I really believed she had been misdiagnosed and might not get any worse."
But as the disease continued to erode her memory and thought processes, Betty Spiker became increasingly dependent on her daughter. "Sometimes I felt angry she had gotten this terrible disease and resented the fact that it was having a profound effect on my life, too," the young woman recalls. "Instead of enjoying motherhood, I was going to doctors, running errands, researching Alzheimer's disease."
More than 5 million people are afflicted with AD today; by 2050, the number could be between 11 to 16 million, according to the Alzheimer's Association. As more than half of all people with AD live at home, many families face enormous challenges in long-term care. Their loved ones must be cared for by relatives and friends day and night over as many as 20 years. In fact, a report from the National Family Caregivers Association found that Alzheimer's disease is one of the top three reasons (along with stroke and heart disease) that adult children become caregivers to aging parents.
The typical caregiver for someone with Alzheimer's disease spends 40 hours a week or more on such care and has been doing so for more than a year. This is the proverbial "36-hour day," as loved ones need increasing levels of help with everything from bathing and using the toilet to feeding themselves; in the late stage of Alzheimer's, people are often incontinent and completely disabled.
For Susan Spiker, whose mother moved in with her family three years ago, the progression of AD means full-time care-giving. "She is at the point where I have to bathe and dress her and assist her in the bathroom. However, we are fortunate that she is sweet and mild-tempered, and the disease has yet to affect her personality. She just cannot remember where the bathroom is, what town we live in, how to turn on her bedroom light, and so on."
Together the mother and daughter go for drives, pick up the kids after school, and do chores. Still, the stresses are unremitting. Spiker says, "Sometimes I feel cheated because instead of being able to concentrate on my young sons, my time is being taken up with Mother's care. And then, of course, I feel guilt for feeling that way. Depression, grief, bitterness, and guilt are all effects that AD has had on me as caregiver."
Alzheimer's caregivers are known as the hidden or second victims of the disease. They commonly suffer from fatigue, stomach problems, headaches, isolation, and stress. According to studies, three-quarters are depressed at least occasionally, and a third of those who care for severe cases are almost always depressed. Many caregivers also withdraw from former activities and friends as their daily tasks become all-consuming.
AD also presents great financial challenges. Most of it isn't covered by medical insurance unless people have pricey long-term care insurance -- because many people need supervisory rather than medical care. At an estimated cost of $35,000 a year, this can wipe out a family's resources in short order. Additionally, studies have found that because of AD's increasing demands, 66 percent of caregivers with a full-time job have to go in late, leave early, or take time off, and 8 percent of such employees eventually quit work altogether to provide full-time care.
The toll on family caregivers is not only physical and financial, however: The worst stresses are emotional. Feelings of helplessness and isolation, exhaustion and sadness are typical, according to studies.
But caregivers need not feel completely alone. Experts suggest the following tips:
- Educate yourself about the disease. Call the national Alzheimer's Association or your local chapter for brochures, web fact sheets, support groups, and lists of books that will help you better care for your parent and yourself.
- Join a mutual support group in person or online (the latter may be more possible for caregivers who have no respite care and rarely get to go out). The people most helpful in terms of resources and self-care tips are usually those familiar with this experience.
- Seek respite care, support, and/or counseling when times get rough. Elder daycare service centers are often available to people with Alzheimer's, particularly in the early and middle stages. There are also 3-day camps and home-based respite services families with Alzheimer's patients, which may be able offer you a few days to relax and catch up on your missing sleep; check with the National Respite Network for more details.
- Start early on legal and financial planning such as setting up a durable power of attorney, a living trust, and advance directives such as a living will, and have everything in place as soon as possible.
- Compile important documents and notify family members where these items are located.
- Hold a family meeting to discuss future medical needs, as well as the care and housing of your loved one. If your parent is in the early stages of AD, discuss her wishes and needs in regard to socializing, housing, medical care, a primary caregiver, and so on.
- Find out about medication options and investigate research clinical trials.
- Familiarize yourself with later stages of the disease and put a plan into place regarding housing. Options range from hiring in-home help and home modifications to outside residential care.
Caring for oneself is critical in caring for a parent with AD: Without respite breaks and support, burnout -- even hospitalization of the caregiver -- can ensue. According to a study at New York University, caregivers who got social support and education were 35 percent less likely to need to place a loved one in a nursing home. Of course, getting enough support is difficult when you are caring for someone around the clock, do not qualify for Medicaid services, lack the money to pay for respite care, and find that some volunteer-staffed respite call centers are often unreliable and basically useless. Hospice services, funded by Medicare, may offer some caregivers this needed support and respite.
For Susan Spiker, joining an online support group and involving her family in her mother's care-giving made all the difference. A church-sponsored daycare session on Fridays was another great boost. Even though Spiker feels her mother slipping away, she treasures the opportunity to care for her. She has also been lucky, she says, to have enjoyed unconditional support from her husband. Despite Spiker's earlier misgivings, she's convinced that she made the right decision. Her depression and grief have eased, and she cherishes the little things her mother is still capable of doing.
"My sons, 5 and 8, are always helping their grandmother," Spiker says. "They wake her in the morning and bring her blankets when she's cold. The oldest reads to her. They have more patience than I do when she asks the same question for the 10th time. As they've gained new capabilities, she has lost them -- it has been the irony of my life. I've learned to appreciate that I am able to take care of her full time."
As her mother's condition continues to deteriorate, Spiker says that she may be forced to put her in a nursing home eventually. "I dread that decision, but I will always treasure these years," she says. "I wish Alzheimer's had not been my teacher, but I'm grateful for the lessons I've learned -- about compassion, love, patience, and dignity."
919 N. Michigan Ave., Suite 1000
Chicago, Il 60611
Its Information and Referral Service (800/272-3900) can help you locate the Alzheimer's support group nearest you.
Administration on Aging
Provides local resources and links on caregiving.
Family Caregiver Alliance
Provides resources and support to caregivers of brain-impaired adults.
National Family Caregivers Association
Provides news and resources for American's 25 million caregivers.
Visiting Nurse Association of America
Offers a database of local agencies.
National Association for Home Care
Provides information on how to choose a home care provider.
Interview with Susan Spiker, Atlanta, Georgia.
Alzheimer's Association. Alzheimer's Disease Facts and Figures.
Michael Castleman et al. There's Still a Person in There: The Complete Guide to Treating and Coping with Alzheimer's. Putnam Publishers/
Howard Gruetzner, M.Ed. A Caregiver's Guide and Sourcebook. John Wiley & Sons.