ICCOA prepares to support Alzheimer's caregivers

Feb. 08--IONIA COUNTY -- Doris Hanulcik traveled the long road of Alzheimer's disease beside her husband, Andy, for close to 10 years.

Andy's doctors gave Doris information on the disease, and helped her with tips on what to do -- and what not to do -- when dealing with someone with dementia. But she also learned a lot about caring for her husband, and surviving as his caregiver, along the way, often by trial and error.

On Tuesday, a handful of people gathered at the Ionia County Commission on Aging to be trained as facilitators for a new Alzheimer's caregivers support group starting up at the ICCOA March 20. Doris was one of them.

The caregiver support group will meet from 12:30-1:30 p.m. on the third Tuesday of the month at the Senior Center in Ionia. Caregivers will be able to meet, talk about their experiences in a safe and confidential setting, share their ideas and seek advice from one another. Caregivers will also learn about other resources in the community where they can get support.

The group is open to anyone caring for family or friends who have one of the 110 different types of dementia. With more than 60-70 percent of those Alzheimer's-related, it's still the leading dementia diagnosis, according to Denise Gibson, program coordinator with the Alzheimer's Association, Greater Michigan Chapter in the West Michigan office.

"Alzheimer's is a very stressful disease and takes an emotional toll on caregivers," said Gibson, who provided facilitator training. "Often their own health goes, because they're always thinking about the other person, and caring for another person. It is important for caregivers to take care of themselves and get the rest they need in order to survive this as a caregiver."

Who are those caregivers? Because the cost of long-term care is high, there is no cure, and the disease can progress over anywhere from eight to 20 years, caregivers are often family members taking care of their loved ones at home. And it's a 24/7 job.

As Alzheimer's patients lose the ability and initiative to do things for themselves, it's the caregivers who have to keep them safe "and bring them joy in every moment of the day, which is not easy to do," Gibson said. "Learning the skills along the way is what people are doing."

That's where the support group comes in.

Even though the Hanulcik family knew what was going on with Andy, interactions with him still could be challenging.

"We got a diagnosis pretty early, but even knowing Dad had Alzheimer's, it took us awhile to train our minds to not say certain things," said Doris and Andy's daughter, Carol, who now is the ICCOA executive director. "Sometimes people think that the best way to talk to somebody with Alzheimer's is just try to really explain something to them. It takes a while to train your mind that that's not how to do it. That just leads you down the rabbit hole. You just change the subject."

Rachel Yenchar, an ICCOA wellness technician and caseworker whose two grandmothers have Alzheimer's, said another place family members can stumble is telling their loved one, "Well, you remember," or asking them "Do you remember ...?"

"Some people truly want them to remember. They really want to pull them out of the disease and bring them back," said Gibson. "I think that's why they do that a lot of times, until they figure out the knack that's needed to redirect appropriately."

Gibson told the facilitators-in-training the people in caregiver support groups become a tremendous resource for each other.

"These people are phenomenal -- they really are. They come up with some brilliant ideas," she said. "By the end of (the disease's) progression, the caregivers get really good by tapping into their strengths and knowing their person."

With the progression of her father's disease, Carol said, something would work for a while, and then it wouldn't.

"You accept it and find something else to do. It's those kind of experiences -- unless you hear someone say, 'Yeah, that happened to me, too' -- I thought I was the only one," said Carol.

"It has to make people feel just more connected and a little more at peace with it, because it's happening to other people and those people are having issues, too," Yenchar agreed.

Gibson cited some 2017 statistics on Alzheimer's disease, including that 5.5 million people in the U.S. are living with the disease -- 180,000 of those in Michigan -- and 511,000 people are caregivers. In 2011, Baby Boomers were turning 65 at a rate of 10,000 a day. It's predicted that 1 in 8 people will have the disease.

"In the next 10 to 15 years, we're going to see a huge increase. ... As we wait for a treatment or cure, my job, with your help, is reaching more people who are living with this disease (as caregivers) every day," she said. "It's going to be hard for some of you, but the experience you've had with spouses and grandparents is going to be very, very helpful for the people."

Doris admitted that she was apprehensive when her daughter encouraged her to become a support group facilitator.

"It's living it all over again," she said. "But I lived through it, and I have experience to share."

To learn more about the Alzheimer's caregiver support group, call the ICCOA at 616-527-5365 or email iccoa@ioniacounty.org.

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