Mary Ann can say firsthand that living with someone who has Alzheimer’s takes a heavy toll: David, her husband of 45 years, has the disease and she is his sole caregiver. “I lose it sometimes,” Mary Ann confided, tears choking her words.
During Alzheimer’s Awareness Month and National Family Caregivers Month, NewBridge Services is sharing Mary Ann’s story to shed light on the struggles and support available to those caring for a family member with Alzheimer’s. Mary Ann described the help for Alzheimer’s caregivers she receives through NewBridge@Home.
According to the Centers for Disease Control and Prevention, 1 in 5 U.S. adults is a caregiver to a family member or friend with a chronic health condition or disability. Over 11 million provide unpaid care for someone with Alzheimer’s or other form of dementia, the CDC reported.
What Is It Like to Be Married to Someone with Alzheimer’s?
Through most of their marriage, David “had always been so easygoing,” Mary Ann said. Unable to have children, Mary Ann’s parents helped them adopt a daughter from Ecuador in the late 1980s. Within a year they sold their home to adopt a son from the same country. David “always wanted to make me happy,” she said.
Mary Ann noticed a change in David about five years ago, when he began having bouts of anger while also dealing with serious health issues. A CT scan of his brain showed early signs of Alzheimer’s. “The surgeon said, `This is going to get bad,’” Mary Ann recalled.
David, 69, is one of more than six million Americans with Alzheimer’s, a progressive, irreversible brain disorder that destroys memory and thinking skills.
Caring for a Spouse
David continued working at an auto parts store but was let go in 2022 because his of memory loss, she said. Then he suffered a heart attack. Mary Ann enrolled him in an adult day care program, but he would wander away. David has been mostly homebound since last June. Mary Ann, who has epilepsy, had to give up her job as a certified medication aide to care for him.
Mary Ann and her daughter-in-law made signs and posted them around the house to remind David to change his clothes, brush his teeth, and take his medication. There’s one congratulating him for retirement as a reminder he doesn’t go to work, she said. Mary Ann also attached a location tracker to his shoe.
The emotional effects of Alzheimer’s on family caregivers is significant. “It can be really hard. He doesn’t like to be away from me and follows me around the house,” she said.
Mary Ann was introduced to NewBridge@Home through Jersey Assistance for Community Caregiving, which coordinates services for David. Katie Skolsky, director of NewBridge@Home, visits Mary Ann weekly. “I look forward to seeing Katie. I talk to her about my problems and she helps me put things in perspective,” she said.
Skolsky gives Mary Ann advice and teaches her coping strategies. For example, she encouraged Mary Ann to identify activities she enjoys and devote time to them. Mary Ann said she is back to sewing, a lifelong passion, and attending Weight Watchers meetings (bringing David along).
“Katie listens to me and guides me,” Mary Ann said. “She is always there for me.”
Resources for Alzheimer’s Caregivers
In addition to providing one-on-one therapy for Alzheimer’s caregivers, Skolsky has developed an hourlong course about caring for family member with Alzheimer’s disease and other dementias. The course addresses Alzheimer caregiver depression/burnout/stress. Senior centers, residences and other organization can arrange for a free class by contacting Skolsky at KSkolsky@newbridge.org. The Alzheimer’s education program for caregivers is funded by the John Bickford Foundation.
Another program that can provide assistance for Alzheimer’s caregivers is NewBridge SAIL (Senior Assistance for Independent Living), which connects older adults with needed community services and provides wellness check-ins so they can remain in their homes. Like NewBridge@Home, NewBridge SAIL is free to Morris County residents age 60 and up.
Professionals from NewBridge SAIL have shared key Alzheimer’s information for caregivers, as well as general advice on caregiving.
Caregivers “can expect to feel lots of emotions: anger, depression, fear, isolation, a sense of loss,” team leader SueAnn Schierloh said in a 2020 interview. For some people caring for family member with Alzheimer’s disease, “there’s a sense of relief, because now there’s a diagnosis and they finally know what’s been causing the problems, what they’re dealing with.
Alzheimer’s Caregiver Guide
Shierloh’s key tip for family caregivers whose loved one was recently diagnosed is to “build a support network, educate yourself about the disease’s progression, and never lose empathy for them.” Patience and flexibility are important qualities to develop.
“That’s especially true when the person is having mood swings and going through behavioral changes,” Schierloh said. “You want to allow them to be as independent as possible, but you have to balance that with safety — and that’s a very fine line.”
Here’s a must on any Alzheimer’s caregiver checklist is self-care: “There are times you need to walk away, to sit outside or lock yourself in the bathroom for a few minutes,” registered nurse Margaret Macrae said. “If you can, get help from family members or a home health aide to give you a break.”
Schierloh suggested anyone caring for family member with Alzheimer’s disease keep a journal, talk with friends or a therapist, and/or join a support group. “Getting feelings out of your mind can have a very therapeutic effect,” she said. Exercise and meditation are helpful. Trying to numb feelings with drugs or alcohol only leads to more problems, she said.
NewBridge SAIL and NewBridge@Home are lifelines for hundreds of older adults and their caregivers each year. Please help fund essential support for neighbors caring for a family member with Alzheimer’s by making a donation at newbridge.org/donate. Thank you!
