November is Alzheimer’s Awareness Month, and it is no secret that caring for someone with that disease is heartbreaking.
Now, the first-of-its-kind caregiver support group is launching in Connecticut. It is geared particularly toward men.
Pansy Homecare Service is starting virtual group, with support from the Alzheimer’s Association. The first meeting is Tuesday, Nov. 1.
Two-thirds of the people suffering from Alzheimer’s are women, and experts say a huge percentage of caregivers are men.
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One of those caregivers is Hamden resident Rick Collins. His wife, Carolyn, lives with advanced Alzheimer’s.
“We met when we were teenagers. I was 15, and she was 14, and we've been together ever since,” Collins said.
Their love story began when they were just kids. Rick and Carolyn Collins even went to prom together before a decades-long marriage.
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“We've been married 52 years. It's been a journey,” Collins said. “The thing that breaks my heart, is we had so many plans for our retirement.”
Those plans were derailed by Carolyn’s diagnosis.
“We were going to see every ballpark in the country,” Collins said. “All our dreams for our future and our retirement are by the wayside.”
Carolyn was diagnosed with Alzheimer’s at age 61. At first it was small memory issues, but that changed four years into her diagnosis.
“She ended up in the hospital for a week, and when she came out of hospital, she was never the same,” Collins said.
She is no longer able to move or speak.
“I said to my daughter one day, I said ‘I would give anything to hear your mother call me an idiot, just one more time. To hear you say, I love you, one more time would mean the world to me,’” Collins said.
He is the witness to the disease eating away at his wife’s abilities.
“My wife hasn't called me by name in four years. How much she recognizes me, I don't know,” Collins said.
Collins said what's most devastating is that Carolyn does not remember their decades-long love story, a story so vivid to him.
“This is one of my favorite pictures, because it's the last family vacation we took together,” he said. “We have periods of time when she looks at me and there's a look, she has a smile on her face. And I get the sense that she knows who I am. And all of a sudden she leaned forward and kissed me on the forehead. Makes my day. Every day as a caregiver, you live for those moments.”
The emotional toll prompted Collins to turn to support groups run by the Alzheimer’s Association, and it is why he now plans to log in Tuesday and join the brand new group for men.
“What is unique about this support group, it is a men's-only Alzheimer's support group,” Jonah Francis, Pansy Homecare Service president, said.
The new Alzheimer’s men’s support group is the first of its kind in Connecticut.
“It's just to really create a safe environment, a comfortable environment so that they will be induced to share, open up and, you know, gain camaraderie, if you will, from other men that are helping people living with Alzheimer's and dementia,” Francis said.
Francis will lead the free meetings. They will take place virtually on the first Tuesday of every month between 5:30 and 6:30 p.m. Each week, the group will tackle a new topic.
“Whether it's communicating with your loved ones with dementia, you know, how to get keys away from them, financial, when it comes to dealing with Alzheimer's and dementia, things that you should be aware of, the 10 warning signs,” Francis said.
He adds the group will offer men the opportunity to share their stories.
“A lot of caregivers are living with depression, and guilt, and burnout,” Francis said.
He said talking about their situations and sharing their emotions is crucial.
“You know that you're not the only one in it,” Francis said. “Sometimes that might be all you need to survive another couple of weeks until you see these same individuals again.”
Most male caregivers will spend three to five years tending to a loved one with Alzheimer’s, according to the Alzheimer’s Association.
“I get very emotional sometimes in a support group, and it's okay, because we're all in it together,” Collins said.
Collins already knows the many benefits of joining a support group, especially finding that camaraderie with other caregivers.
“You need somebody who's going through it, to pat you on the back and say, ‘I'm here for you,’” he said.
He said the group also gives him reminders to carve out special moments with his wife.
“To keep you on track, to remind you how important it is for you to cuddle with your wife from time to time,” Collins said. “If we're going to be watching TV for any length of time, I want to do it on the sofa, so that I can sit and cuddle with her on the sofa, like old times.”
Anyone who wants to join the new Alzheimer’s men’s support group can call the Alzheimer’s Association 24/7 Helpline at 1-800-272-3900. You can also contact Pansy Homecare Service directly to register at 860-212-6433.