Caregivers share their stories to help others

Toni Stuart, an 81-year-old Peoria resident, made one choice that shaped her entire experience acting as a caregiver for her husband Ted. She found a caregiver support group.

In 2011, when Toni found a local support group through a community partner, her husband’s dementia symptoms were barely noticeable. This gave Toni time to update their will and trust, research available local resources, and learn about Alzheimer’s disease. By educating herself, Toni was able to accept what was possible from her husband of 53 years while his disease progressed.

“The support group was a godsend,” said Toni. “The group not only provided support, but they also brought in people to educate us on our future needs, legal issues, and resources in the community like day care.”

Toni was able to enroll Ted in a program that provided care during the day, which gave her time to complete daily tasks and pursue her own hobbies of yoga, book club, and lunches with supportive friends.

“Emotionally, I’ve lost my life partner,” Toni says. “That’s what ambiguous loss is about. He’s here physically, but mentally I’ve lost the person I’ve married. That’s a loss. But I think the research, education, and support has made the loss a little easier.”

Toni and her 70-year-old fellow support group member, Suellen (pronounced Sue Ellen) Brahs, took another critical step at the beginning of their caregiving journey. They both participated in a program that helps couples work through emotional and logistical issues of caregiving while the person with Alzheimer’s disease or dementia is healthy enough to make decisions.

“I found the program very helpful,” said Suellen, who has been married to her husband Dwight for 48 years. “It gave us a lot of good conversation starters about what might be coming and decisions that we might have to make. It made us to talk about those things before we wanted to, but while everybody had a clear mind.”

Toni and Suellen shared their caregiving stories hoping that others could learn from their experiences. They offer the following advice to other caregivers.

1. Find a support group. No one will understand your experiences like other caregivers. The group can offer compassion, advice, education, and camaraderie.
2. Educate yourself so you know what’s possible and what isn’t. If you understand how Alzheimer’s disease and other dementias change a person’s brain, you can better accept your loved one’s behavior.
3. Learn about available resources in your community. This includes day care facilities, educational workshops, legal assistance, healthcare providers who make home visits, and long-term care facilities.
4. Appreciate what you have with your loved one. Toni says she still enjoys sunsets with Ted.
5. Let go of worries. Suellen used to focus on her biggest fear, that Dwight would no longer remember who she was. “Don’t get carried away with worrying because it might never happen,” she said.
6. Be flexible. Suellen’s husband is no longer comfortable leaving their house for their favorite activities. Now Suellen and Dwight stay home to watch baseball games and eat pizza with friends.
7. Find a neurologist who specializes in dementia. Contact your insurance company to find a healthcare provider that best fits your needs.
8. If you’re a reader, check out The 36-Hour Day and Loving Someone Who Has Dementia.
9. Don’t hesitate to ask for help when you need it. Both Toni and Suellen’s children spend nights with their fathers if the women need to leave town.
10. Have a sense of humor and compassion towards yourself. “Caregiving is about the person and not the task,” Suellen said. “No one died from being dirty. You can try again later.”

For more information about caregiving, healthy aging, and Alzheimer’s disease and related dementias, please visit the Arizona Healthy Aging website.

 

The award-winning, nationally recognized Arizona Department of Health Services is responsible for leading Arizona’s public health system, including responding to disease outbreaks, licensing health and childcare facilities, operating the Arizona State Hospital, and improving the overall health and wellness of all Arizonans.