When a person becomes a caregiver for a loved one with Alzheimer’s, they face new challenges in their lives—and some even find new joys. And having others with similar experiences they can talk to can make a big difference.
That’s where Alzheimer’s support groups come in. Since stay-at-home orders were declared in March, support groups offered by the Alzheimer’s Association of Greater Missouri are meeting via virtual platforms or telephone.
But KSMU was able to attend a meeting at Willard’s First Baptist Church just before they were halted to prevent the spread of COVID-19.
About 25 people sat at three long tables, formed into an open-ended rectangle, and listened to a speaker who was a caregiver for her mother who passed away from Alzheimer’s. She used humor to lighten the mood. The tables were adorned with fun decorations, and there were snacks for participants. Each person had an opportunity to share with the group while others nodded in agreement or offered advice.
Carol Bourbina helps lead this support group. And she greets everyone with a friendly smile and hello as they enter the building.
Wayne Creed started attending the support group in Willard three years ago. He attended one in Springfield, but it wasn’t the right fit. This one was.
"I got a list of different places and just started going down the list, and talking to people and ended up here," he said.
Creed’s wife, Caroline, has Alzheimer’s, and he cared for her at home for about a decade until 2017 when she was moved to a care center in Strafford. He still feels guilty about the decision, even though he knows it was a necessary one. And it helps to have others to talk to who understand.
Creed said support groups are "worth their weight in gold."
Shirley Fouraker cares for her husband of 56 years, Bob, whom she recently had to move to a nursing home. She started attending the support group three years ago—not as a participant but as a helper. She sat with dementia patients as their caregivers attended the meeting.
"The Lord had kind of revealed to me that I was going to be facing this sooner or later, and he put me right in the right place at the right time," she said.
There’s still someone at each meeting who is prepared to sit with dementia patients as their caregivers meet.
Nancy Johnson and her husband, Gregory, cared for Nancy’s mother who in a nursing home with Alzheimer’s until she passed away in April. They’re now caring for Gregory’s godmother who was recently diagnosed. Nancy says they found out about the support group from the sign in front of the church.
"I was frustrated cause I wanted to help my mom. I didn't know how to do it," she said, "and my best friend took a picture of the sign and sent it to me and said, 'if Greg is busy, I'll go with you, but we're going next Tuesday,' and we started last August."
They’d only missed one meeting since. And they say they appreciate the things they’ve learned at the meetings and the support they provide.
"These people are wonderful," said Gregory Johnson. "You couldn't ask for anyone better. They have probably more information, and most of them have been through it, the things that you're going through. You know, as you see in the meeting, you have first timers that maybe the person they're caring for isn't as advanced into dementia as our person is, so you all the stages of dementia right in that room."
Fouraker said the support group gives her an outlet for her feelings and frustrations. And what is said in the room, stays in the room.
"Just to be able to vent, be able to talk because you don't want to just tell everybody that your husband wouldn't let you come to bed last night, you know, because he wants the other Shirley to come to bed with him, well, and just being able to see that, no matter how much you hurt, there's others that are hurting worse," she said.
Or as much, adds Nancy Johnson, because she said until you’ve had to watch a person live with Alzheimer’s, you have no idea what it’s like.
"I could say something like, 'well, when my brother comes down, I get a break.' Well, somebody else hears me say, 'you get a break from your mom?' But all these people (say), 'oh, that's good he comes down to give you a break.' You know, before I came here I probably would have felt guilty telling anybody that. But, you know, when you're in it every single day, it makes a big difference in all your life, you know, all the other things you do in life."
Her husband adds that another reason to attend a support group is that they allow you to learn about symptoms before they happen so you can prepare for them.
"You've heard about that already. You've seen someone or visited with someone that's explained it to you to where you understand it, and now it's not as bad," he said.
Support groups offer opportunities for those who share similar experiences to come together, according to Sarah Lovegreen, vice-president of programs for the Alzheimer’s Association of Greater Missouri.
"It allows them to share their frustrations, their feelings and hear that other have had similar experiences to them and that they're not alone, so it really helps reduce potentially that feeling of isolation that caregiving for somebody with dementia may present," she said.
Judee Steward is a support group leader in Springfield.
When they can meet in person, there are 12 to 20 people at each meeting, according to Steward, and there’s a respite group that allows Alzheimer’s patients to attend. Activities for the patients encourage reminiscing.
The major benefit of support groups, according to Steward, is the camaraderie a support group provides in a safe setting.
"No one knows what you're going through except for the person sitting next to you, and, so, by being all together, they're able to provide that support and that understanding, and an unconditional understanding, about about what's going on, and there's no judgment there," she said.
Some groups are taking a break since the pandemic forced cancelation of in-person meetings, according to Lovegreen. But many are still meeting online or by phone. And group leaders are reaching out to individual members to check on how they’re doing. There’s no timeline yet for when in-person meetings can resume.
"Certainly, when it comes to our caregivers and those living with Alzheimer's disease or another dementia, you know, by nature of being older, potentially having other co-morbidities, they're at higher risk, for, you know, adverse outcomes when it comes to contracting COVID-19, so we really want to be sure, I think, that our communities are ready to come back...that we're not seeing that, you know, potential resurgence, and so we're being conservative, we're being really conservative," she said.
When in-person meetings are allowed to resume, Lovegreen said, they’ll continue to offer opportunities for people to join virtually—something they’d never done before the pandemic.
There are friendships that are formed in the Willard support group and others. Wayne Creed tried to quit when his wife went to a nursing home, but the other members wouldn’t let him. They told him they needed the advice he gave, and he enjoys going. Fouraker calls Creed their rock.
You can find a list of support groups for caregivers of Alzheimer’s and dementia patients in southwest Missouri here. And the Alzheimer’s Association has a 24/7 helpline. That number is 800-272-3900.