In order to cope with difficult situations, many people seek the help of their loved ones, asking for advice or finding a shoulder to cry on. When those loved ones are facing difficulties of their own, however, finding support within one's home can become impossible.
When a spouse or a parent becomes ill or suffers from memory loss, the burden often falls on a husband, wife or child. That's where caregiver support groups can come into play.
These groups offer those who care for their loved ones the chance to learn, share their experiences and find strength.
Article Photos
Sue Wilke, left, poses for a photo with her mother, Dorothy Parrish, who has Alzheimer’s disease, and their dog, Daisy. Parrish has two sons, one of which she donated a kidney to. She moved to Jamestown from Ohio to live with her daughter and son-in-law, Dave, a few years ago.
P-J?photo by Scott Shelters
SHARING THEIR STRUGGLES
Sue Wilke has been a member of the local Alzheimer's Association caregiver support group for three years. She and her husband, Dave take care of her mother, Dorothy Parrish. They moved her up from Ohio to live with them.
"If you're doing things on your own, there's really nobody you can go to," she said. "This (support group) is helpful. When you're having a problem at home, other people will have suggestions on what they did to solve that problem. It's always a new challenge. We vent a lot. We laugh together. We cry together. That helps to get everything off your chest. It's a very supportive group."
Lois Bentley joined the group a couple months ago. She cares for her 96-year-old father, who has short-term memory loss, and her 63-year-old brother, who has a severe case of Alzheimer's.
Her situation became more difficult when she decided to take their car keys, and her father got angry with her.
"I was really beside myself," she said. "I didn't know what to do. I was so hurt. You do the best you can, and the people you're caring for don't appreciate that and really think that you're not doing the best for them."
She called Maggie Irwin, the group's facilitator. Irwin, who was on vacation, returned Bentley's call, despite the fact she had never met her before. The two later met in person and Bentley began attending the meetings. She has enjoyed the transparency that the support group offers its members and described Irwin as "phenomenal."
"It's hard to put into perspective what you're dealing with," she said. "After listening to other people, I realized that this really isn't easy. I'm not the only one who's having a difficult time. Taking care of both of them is quite a challenge. When you listen to other people, it makes you more aware of your own emotions. At least that's what it did for me."
As many as 15 people, most of which are women, attend the Alzheimer's Association group. The attendees are typically sons, daughters or spouses who take care of loved ones.
"They come to talk about what they're going through," Irwin said. "It's a degenerative disease. There is no cure for it. If you're taking care of somebody, they're just going to go downhill, but they're going to go downhill at different rates. You could have Alzheimer's for 25 years before you die. People with Alzheimer's sometimes are very angry. They can be very anxious or confused. It's very sad; it's a very sad disease."
Group members discuss how to solve problems. Irwin just keeps the conversation going, making sure everyone gets a chance to talk.
"You don't have to talk about your feelings; you can just talk about your problems," she said. "These people are losing someone they love, and it's not the person they love anymore because they act differently. Imagine living with someone who constantly asks you the same question. There's a lot of frustration. Everybody experiences it differently. Everybody goes through it at a different rate and different things happen."
Family Service of Chautauqua Region has its own caregiver support group. Like the Alzheimer's Association group, the Family Service group is free to attend, is run by a licensed social worker and area residents meet to share their feelings and to learn from one another. However, the group is different from the Alzheimer's group in that it's meant for caregivers of all kinds.
"If a person is struggling giving care to a loved one, they are absolutely welcome to come to the group," said Connie Ackerman, the group's facilitator. "Some of the participants are caring for elderly parents. One new gal is caring for a disabled spouse who is young. We have some people who are attending who were caregivers, but their spouse or parent died. They're continuing because they can kind of contribute some ideas for the people who are dealing with it currently. It can be anybody. If they have an 18-year-old son who has a traumatic brain injury and isn't able to care for himself, they certainly would be welcome to attend."
Typically, the group hosts eight to 10 area residents each month, including a couple of men. Very few men have attended the Alzheimer's Association group to this point.
"A lot of times, men don't like to talk about their feelings," Irwin said. "I would love to start a male support group if that makes them more comfortable, but I'm not going to start it unless like five men come to me and say they're interested."
Like the Alzheimer's group, the Family Service group is primarily discussion-based, with Ackerman facilitating conversations. Both groups occasionally host guest speakers.
FINDING SUPPORT TO DELIVER BETTER CARE
Janell Sluga, geriatric care manager for Senior Life Matters, a program of Lutheran Senior Housing, has found that many local caregivers choose not to seek help. Without that support, she doesn't believe caregivers will deal with the hands they've been dealt as effectively.
"I think it's really significant that someone who is going through what you are going through can give you information that someone who hasn't been through it won't even begin to tell you," she said. "We need to acknowledge our caregivers, the work that they do and the 24-7 responsibility that they have. We need to give them the support that they need to succeed. The more support that they have, the more successful the caregivers are going to be."
Caregivers often struggle with added responsibilities. A spouse or child may have to pick up the slack around the house, completing activities previously handled by the person receiving care.
"In each relationship, each person has a responsibility," she said. "When you become the caregiver, you often are carrying both parts of that relationship. In addition to caring for the person, you're also mowing the lawn, paying the bills, buying the groceries, cooking the meals and making sure that the laundry is done. What the other half of that relationship used to do, all of the sudden you're doing all of it."
Ackerman has seen first-hand the effects of those added tasks. Some of those who attend the Family Service group struggle with the additional stresses.
"I think of one person in particular who had been in a regular, normal relationship, and now her husband is not able to do anything," she said. "The full load is on her, and it's just not something that you really plan for. The caregiver becomes the primary person to have to take care of everything. If it's a parent, you essentially gain a child as the parent gets older. They become so much more dependent. The caregiver ends up with essentially double the load that they had."
Although each meeting is similar in many ways for both groups, opportunities to give and receive advice vary by the month.
According to Wilke, those who have been caregivers for the longest often give tips to newcomers. In some cases, they'll discuss how to cope with specific situations, such as how to take a loved one's keys, how to select a nursing home and how to manage funds.
The Alzheimer's Association group has allowed Bentley to find strength in numbers. Through the group, she believes area caregivers find the best ways to cope.
"Everyone's situation is similar, but everyone's situation is very different," she said. "We deal with things according to our personality and according to our background."
WHERE AND WHEN
The Family Service of Chautauqua Region caregiver support group meets on the fourth Tuesday of each month at 12:15 p.m. at Christ First United Methodist Church, 663 Lakeview Ave., Jamestown. Call 488-1971 for more information.
The Alzheimer's Association caregiver support group meets on the second Tuesday of the month at 1 p.m. at Jamestown Area Medical Associates, 15 S. Main St., Jamestown on the second floor. Call 483-5448 for more information.