Jackie Kuhn-Damron said Alzheimer’s leads to two deaths. “One is when the person physically passes, and the other is when they forget who you are. Guess which one people say is harder?” she said. As a community educator for the Alzheimer’s Family Organization, the Village of Bonita resident helps with the journey of caring for those with Alzheimer’s, but afflictions such as cancer, strokes, multiple sclerosis and more can lead to someone filling a caring role. According to the 2020 Caregiving in the U.S. report from the AARP, more than 1 in 5 Americans are caregivers, a growing group that is recognized each November during Family Caregivers Month. From 2015 to 2020, the number of caregivers caring for another adult increased by more than 8 million, according to the report.
Carolyn Vena, of the Village of Summerhill, cares for her husband, Richard, who was diagnosed with dementia about 12 years ago.
She said they immediately started following the doctor’s advice to remove stressors from Richard’s life, keep a routine, have him stay as mentally active as possible and always take things one day at a time.
“We are very, very fortunate,” Vena said. “You never know how this disease is going to work on anyone. They just know that it is. You can never go back, but you can try to slow the progress by doing the right things.”
Carolyn and Richard regularly attend Walk Away the Pounds classes, go to driveway concerts together and love to dance anywhere they can. Richard makes sure their car is always the shiniest on the block, does house chores and daily word searches and crossword puzzles.
However, Carolyn still bears extra responsibility of making sure he’s safe and doing the right things.
“From a caregiver standpoint everything goes through me,” she said. “‘What shirt he should wear, should he close the front door, should we raise the temperature in the house or lower it. Everything single thing I have to decide, and that’s one thing that’s very stressful, but in the big picture that’s pretty small.”
She also carries the weight of the worry of what his condition may turn into.
“You worry about it all the time” Vena said. “You keep waiting for the other shoe to fall.”
Barbara Gaines cares for her husband, Steve, who has multiple sclerosis. She has a formal caregiver come to their home in The Village of Calumet Grove for 12 hours a week.
That allows her to go to Paula Luvs 2 Stamp in Wildwood to continue her scrapbook design passion without worrying about Steve, who gets around by power chair and can’t use his left arm.
Barbara said each of them having their own “thing” — for Steve, that’s playing cards — has helped them cope with a journey that hasn’t always been easy.
Caregivers making time for their own health and hobbies is essential for both the caregiver and the loved one, said Jim Deutch, a licensed clinical social worker and volunteer with Transition Life Consultants.
“That is the bottom line, no matter what the disease is or the stage it’s in,” he said. “If the caregiver is unable to give, what’s going to happen to the loved one?”
Deutch, of the Village Santiago, co-leads a group with TLC called ‘What About Me?”
The group offers support to people who are caring or have cared for someone battling cancer.
Deutch cared for his late wife, Marcia, when she had cancer and then dementia. He said most people keep their focus on the loved one and their diagnosis.
“Sometimes you sit down and think, ‘What about me? I’m a human being. I have feelings. Why don’t I count?” he said. “Some people don’t want to think about that because it sounds selfish. But it’s not selfish — it’s about self preservation.”
The need for caregivers will increase, according to the Center for Disease Control and Prevention, which predicts the number of people aged 65 and older will double between 2000 and 2030.
Kuhn-Damron supports a portion of that growing number by setting up support groups and doing home visits for caregivers of those with Alzheimer’s.
She said many people feel overwhelmed and don’t know what the next step should be. She offers them support, encouragement and education — starting with the fact trying to argue someone with dementia back to the present won’t benefit anyone.
“They may be back 50 years, and if they are adamant that’s where they are, then that’s where they are,” Kuhn-Damron said. “If they try to bring them to reality, the only person who suffers is the caregiver. I work with them on getting through one day at a time.”
Call Kuhn-Damron at 574-721-1177 for information about support groups.
Caregiving should be treated as a team game, Deutch said, and you’re going to lose if you try to be a hero and do it all yourself.
“If anybody knows of a family member who is a caregiver, the greatest gift you can give them is time,” Kuhn-Damron said. “Watching the loved one affords them an opportunity to have some time for themselves.”
The majority of caregivers potentially have a long road ahead — and for more than just Alzheimer’s — 63 percent of caregivers say they are caring for someone with a long-term condition.
“To me, one of the biggest things in dealing with a long-term illness is dealing with the unknown,” Barbara said.
People with multiple sclerosis have communication problems between their brains and the rest of the body due to the protective covering around nerve fibers being destroyed by the immune system.
Steve was diagnosed in 1995, and how it affects people varies widely — some people lose their ability to walk while others go years without any new symptoms.
There is no cure.
Barbara said having groups like the Multiple Sclerosis Village People to turn to for support along with a team effort with Steve make her more prepared for the journey ahead.
“This really is a partnership,” she said. “It’s the kind of thing I know he would do for me. And it means he’s still with me.”
Specialty Editor Mackenzie Raetz can be reached at 352-753-1119, ext. 5354, or firstname.lastname@example.org.