by Mary Mathiew and Andrea Traskos
November is National Alzheimer’s Disease Awareness and Family Caregivers month. This year we honor the 5 million Americans living with Alzheimer’s disease and their more than 15 million family caregivers. Last year, these family caregivers provided 17.5 billion hours of unpaid care, valued at $216.4 billion. Few realize that 80 percent of dementia care provided in the community is done by unpaid family caregivers. By 2050, we can expect the number of Americans with Alzheimer’s to reach 16 million, likely tripling the number of family members providing their care.
In 2010, Maria Shriver published The Shriver Report clarifying the scope and burden of dementia and caregiving on women, stating that nationally, women make up 65 percent of individuals with Alzheimer’s—and up to three-fifths of all Alzheimer caregivers are women. Furthermore, the decision to become a caregiver—and about four in 10 report having no real choice—can have a major impact.
Common symptoms of caregiver’s stress and burnout are denial, anger, social withdrawal, anxiety, depression, exhaustion, sleeplessness, irritability, lack of concentration and other health problems. More than 60 percent of dementia caregivers rate the emotional stress of caregiving as high or very high and more than one-third report symptoms of depression. Last year, due to the physical and emotional toll of caregiving, family caregivers personally had $9.1 billion in additional health care costs.
To better describe the stress of dementia caregiving and how to best manage its challenges, the following three women shared their stories.
Sharon Koets’ husband Dana died two years ago of Alzheimer’s disease and Lewy-Body dementia. Dana, better known as Bumpa to his grandkids, became ill in his early 60s. Sharon worked full-time throughout Dana’s illness, using adult day services and help from family and friends. She managed the stress of balancing work and caregiving by reaching out for support although she often found herself worrying about Dana’s safety and well-being.
“I agonized all the time and I think I cried for the first two years,” she said, laughing. “I was in charge of the Kleenex at my support group meetings.”
Sharon stated her support groups were “first and foremost” in helping to handle the stress.
“I gained knowledge of services, coping strategies for myself and for managing the challenges of the disease.”
Today, Koets volunteers as a co-facilitator for both of the groups she attended, sharing what she learned and providing support to others.
“In hindsight, I think caring for Dana made me a better spouse and caregiver. I learned to be more patient with both him and myself,” Koets said. “I learned the importance of caring for myself—I didn’t want to become another statistic. Sometimes all I wanted was ten minutes in a bubble bath with my book or magazine. Finding time for me was hard, but so important.”
Anna Papke works at the Family Life Center’s Side-by-Side Adult Day Program. She also helps her Mother and Grandmother take care of her Grandfather who has fronto-temporal dementia. Anna states that being a caregiver is a blessing when you recognize the “uniqueness” of each person with dementia. She describes her job as providing “care, support, and guidance” to assure their comfort and safety.
Papke states that in dementia care “one approach can work one minute and not the next.” This “can overwhelm you and make you feel lost, questioning who you are and if you are doing what is best for the person.” She reports that faith helps her manage this stress.
“I believe God is in control of every situation and has a bigger plan.”
She also makes time for herself and her family.
“I try to keep weekly date nights with my husband, family traditions, and regular get-togethers with friends.”
She also facilitates two support groups where she connects with other family caregivers stating it helps “knowing you are not the only one caring for another person who relies on you.”
Deb Wittaker’s 52 year-old husband Keith has younger-onset Alzheimer’s disease. Since his diagnosis, Keith was forced into early retirement. Today he works hard as a stay-at-home dad to the couple’s two children aged 9 and 11. Deb works full-time while also learning to cope and manage this unplanned caregiving role. Being forced into caring for your spouse while raising your children is overwhelming; add to that the unpredictable nature of a progressive dementia and you have the definitionof stress.
Despite her situation, Wittaker relies on advice from her good friend who told her “focus on what you can control.” She states this simple but “so true” advice “immensely” helps her maintain a healthy perspective.
“I know there will be some hard times down the road, but if I worry about tomorrow, I have wasted today which is precious time with Keith,” Wittaker said. “So when I get stressed, I try to stop and focus on what I/we can control, this is not always easy. I try to stay as busy as I can, if I let my mind go to the ‘what ifs’ I get really stressed. So for now, I focus on NOW.”
TIPS TO PREVENT CAREGIVER STRESS
• Find a way to relax. Caregivers need to try different ways that works for them. Ideas that could help relax include meditation, breathing exercises, visualization, and progressive muscle relaxation.
• Make time for yourself. It is important to take care by seeing your doctor regularly, watching your diet, exercising and most important—get plenty of rest.
• Become an educated caregiver. Learn about the how to be an effective caregiver by getting on line and/or taking caregiving classes in your local community.
• Know what resources are available. Contact your local Alzheimer’s Association Chapter through their 24/7 Helpline at 1-800-272-3900 or visit them on line at www.alz.org.
ABOUT THE AUTHORS
Both Mary and Andrea work for the Alzheimer’s Association–Greater Michigan Chapter. Mary coordinates early-stage programs for people with the disease and their care partners, and Andrea works as a Marketing Specialist.