As a caregiver, you know Alzheimer's disease never affects just one person in a family. Your life has changed, too, from your social life and relationships to your goals and priorities. "Changed" isn't even the word -- you've gone through a total upheaval, the kind that splits a life in two. In the years before Alzheimer's, you may have worried about the lawn or local politics or today's kids. In this new era, you worry about getting through the day.
As isolated as you may feel, you are far from alone. Millions of other caregivers are going through the same struggles. Like you, they are providing near-constant care and supervision to someone who doesn't always recognize them. Like you, they feel embarrassed if their loved one yells obscenities or disrobes in public, and they feel a deep sadness that they have to show their parent, grandparent, or spouse how to use the toilet.
All of that hard work and frustration takes a toll. According to the Alzheimer's Association, over 40 percent of all caregivers say they live with high levels of stress, and at least half suffer from depression. Such turmoil saps a person's strength, patience, and energy, making it even harder to give loved ones the care they need. Depression and stress also threaten a caregiver's health by weakening the immune system and raising the risk of heart disease, substance abuse, and many other disorders.
You've spent so much of your life caring for others. Now it's time to care for yourself. By taking steps to reduce your stress and preserve your health, you'll be helping everyone in your household.
Cardinal rules of caregiving
Staying informed is an excellent way to reduce the stress of caregiving. Books such as At the Heart of Alzheimer's, The 36-Hour Day, and Alzheimer's: A Caregiver's Guide and Sourcebook explain the course of the disease and provide invaluable practical advice. Knowing how to bathe, feed, and dress an Alzheimer's patient with a minimum of fuss and frustration will greatly ease your burden. Just as important, you'll learn to set realistic goals -- getting clothes on his body vs. getting him perfectly dressed -- and to take things one day at a time.
These books also drive home the cardinal rule of caregiving: You can't do everything yourself. Even if you're physically capable of performing every task your loved one needs, your mind can't take the endless strain. There's no shame in asking a relative, friend, professional aide, or adult daycare service to give you some time off. If you don't know anyone who can help, call your local chapter of the Alzheimer's Association for advice.
Make sure to invest at least some of that free time in your health and peace of mind. Regular exercise will help revitalize your mood as well as your body. You should also get plenty of rest and make regular visits to your doctor. And take the time to join a support group, either in your town or on the Internet. Hearing about other caregivers' experiences and sharing your own will give you new knowledge and strength to cope with the illness.
Don't wait till you snap
If you find yourself losing your temper regularly and yelling at your loved one, or doing other things that you regret, you have to get some help. It's not fair to the person with Alzheimer's or yourself to go on like that.
You should always be on the lookout for signs of depression and stress. If you regularly experience any of these symptoms, see a doctor, therapist, or other expert for help:
- Irritable mood
- Feelings of worthlessness or excessive guilt
- Suicidal thoughts
- Sleep problems
- Loss of interest or pleasure in usual activities
- Difficulty concentrating
- Unexplained changes in appetite and weight
Finally, save a corner of your emotional life for yourself. Try to make sure your emotional life doesn't revolve entirely around your confused loved one.
As a case in point, a woman whose father had early-onset Alzheimer's recalls a time in which her father's deterioration weighed on her so heavily that she lost interest in anything else.
She relates the following dream she had during that period: Her father was in a car rolling slowly downhill, but for some reason he was unable to step on the brakes. Terrified, she ran after the car and grabbed the bumper, pulling backward with all her strength to keep it from rolling any further. But the car continued to roll forward, dragging her through thorny underbrush and forcing her to let go. Then she ran in front of the car and stopped it with her hands, straining to hold it in place, but it kept pushing forward until, in order to save her life, she was forced to jump clear.
When she woke up, she said, the dream's meaning seemed transparent: The car rolling inexorably downhill symbolized Alzheimer's, and neither she nor her father nor anyone else could stop it from running its course. "Of course, I kept on helping take care of my father," she said. "And I loved him just as much as ever. But I tried not to let the disease run me down and destroy me, too. I knew that's what my father would want me to do: jump clear."
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.
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.
Nancy L. Mace, M.A., and Peter V. Rabins, M.D., M.P.H. The 36-Hour Day. Johns Hopkins University Press.
Lela Knox Shanks. Your Name Is Hughes Hannibal Shanks: A Caregiver's Guide to Alzheimer's. The Penguin Group.
Carol Simpson. At the Heart of Alzheimer's. Manor HealthCare Corporation.
Alzheimer's Association and National Alliance for Caregiving. Families Care: Alzheimer's Caregiving in the United States. http://www.alz.org/documents/national/Caregiverreport.pdf
Sloane, Philip. Advances in the Treatment of Alzheimer's Disease. American Family Physician. Vol. 58, No. 6, 1577-1586.
Arkin, Sharon. Elder Rehab: A Student-Supervised Exercise Program for Alzheimer's Patients. The Gerontologist. Vol. 39, No. 6, 729-735.
Virginia Bell and David Troxel. The Best Friends Approach to Alzheimer's Care. Health Professions Pr: 1996. 264 pp.
Dr. William Molloy and Dr. Paul Caldwell. Alzheimer's Disease: Everything you Need to Know. Firefly Books. 208 pp