More than 20 million people in North America provide unpaid care each year for nearly 7 million people living with Alzheimer’s or other dementias. I’d like to share the story of one of these many family caregivers, my friend whom I will call Debbie.
When Debbie was 62, she and her husband invited her 86-year-old mother to live with them. Debbie’s mother had mid-stage Alzheimer’s disease and was unable to care for herself. Debbie lamented that her once sweet, upbeat, community-service-oriented mother was ravaged by Alzheimer’s disease. Now Debbie was required to care for her mother, the same person who had provided care for her and so many others throughout her life.
Debbie had to assist her mother with all the activities of daily living like dressing, bathing, and eating. Her mother continually repeated questions about what was happening. She frequently became disoriented and often fought against the care she was receiving because she could not remember what was happening or why it was happening. She became agitated and often lost her temper.
Her mother suffered from sundowning, which meant she was confused about when to sleep and when to be awake. Debbie awoke in the middle of the night to find her mother wandering through the house extremely anxious and disoriented. Since her mother no longer recognized Debbie’s husband, Debbie was the only one who could calm her mother down.
Twice Debbie’s mother was able to leave the house and start walking down the street in the middle of the night. The first time it happened, Debbie fortunately heard the front door close and was able to retrieve her mother before she had wandered too far. However, the second time, her mother left the house undetected, and Debbie received a phone call at 3:30 a.m. from the local police letting her know that her mother had been found walking down the road in only her nightgown.
The continual stress and effort that Debbie gave to care for her mother became intense. She did not know where to turn for help. Her two siblings didn’t accept that their mother had Alzheimer’s disease, nor that the symptoms were as bad as Debbie described. Their denial was reflected in the lack of assistance they offered. Since both of them lived hundreds of miles away, they were unable to regularly visit or offer help anyway.
Debbie felt awkward turning to friends, ward members, and other neighbors because she wasn’t sure how to explain her mother’s condition, and her mother didn’t respond well to new people. Debbie rejected the idea of getting help from professional services because she felt responsible to serve and care for her mother. Moving her mother to an assisted-living community was out of the question as well since her mother had once said she didn’t want to go to any place like that.
Week after week and month after month, Debbie continued giving more and more care to her mother. She focused less and less attention on her own health. One afternoon about 20 months after Debbie’s mother moved into Debbie’s home, Debbie’s husband returned from the store to find his mother-in-law agitated and pacing around the kitchen. He found Debbie collapsed on the living room floor. She was breathing but unconscious. She was taken to the hospital and was admitted due to a mild heart attack brought on by exhaustion.
Unfortunately, Debbie’s story is all too common. As the executive director of the Alzheimer’s Association of Utah, I hear a version of this story often. Due to the nature of the disease and the impact it has on memory, cognition, and personality, there is often a stigma associated with Alzheimer’s or other dementias that leads to isolation for caregivers and a lack of engagement with family and others. This stigma tends to discourage family caregivers from seeking outside assistance.
I encouraged them to visit alz.org to find free web-based services offered by the Alzheimer’s Association and other community organizations. The site includes family support services as well as education programs about the signs and symptoms of the disease and how to reduce risk of developing it. The site offers an online Alzheimer’s and Dementia Caregiver Center, with helpful tools for caregivers. It also provides connections for caregivers to local support groups, care consultations, and opportunities to connect with others who are in the early stages of the disease. Likewise, ward council members can use this resource to better understand the disease and learn how they can offer assistance to people serving as caregivers.
Another effective service is a free 24/7 helpline at 800-272-3900. Trained consultants offer callers advice, information about care, help with crisis situations, referrals to local organizations, and support in more than 200 languages and dialects.
The site communityresourcefinder.org is a database of organizations in the United States that offer services for people living with dementia and their caregivers. Services include respite care, adult day care, assisted living, and connection to local area agencies on aging.
Ronnie Daniel is the Executive Director of the Alzheimer's Association of Utah.