How to Build a Caregiver Support System
When suddenly thrust into life as a caregiver, one needs support—financial, social, emotional, and physical—but how and where do you find it?
The answer to that will be unique for every person and each situation. Some people might have big families or an extensive group of supportive friends who jump in to help out, but most will not have this ideal situation.
And even with strong support, caregiving can be such a demanding, lonely job that isolation is common whether it happens while waiting for hours in the hospital or while at home struggling to figure out the ins and outs of insurance coverage.
For example, even with supportive siblings, in-laws and an active church family, former Kathi Koll Foundation award recipient Suzanne Aragon spends 90 percent of her time visiting with her husband alone. However, the support she has received has been essential to caring for her husband, who has had multiple strokes over the past six years. A couple of years ago, her savings were exhausted, so financial aid from siblings and others, helped fill the void.
Her husband has since been in and out of care facilities and hospitals, and a church member, who travels frequently, offered Aragon a room, meaning she can live just minutes away from her husband's current home. Another source of support sprang from her best friend, who organized a 6 a.m. daily phone call that evolved to include multiple women who now meet in person once a week.
“They've been an extreme support,” Aragon said. “They make sure I'm getting rest. They check in with me. It's very comforting.” Once, the entire group came to visit with her at the hospital. “That was huge. I wasn't alone. You just get tired of being in the hallways by yourself.... After their visit, I could go right back to the ICU and face another few days.”
Whatever the situation, there are ways to find support, and this support is essential to a caregiver's well-being. Here is a list of steps that caregivers can take to enhance their support networks:
1. Create a team: If at all possible, this should be not only the first step, but also something to keep in mind throughout the entire caregiving process. Often, there are various family members who are responsible for the ill loved one, even if only one is the primary caregiver. For example, with an ill parent who has several children, it's important that one sibling not take on the entire effort. Instead, get together regularly, even if it's by phone, to consider how to divide the work. Some may be able to help monetarily, while others can give time. Perhaps someone is good with bureaucratic issues and can take on dealing with the insurance company and hospital bills. Maybe someone else can help with errands or cook meals. Make a list of all of the needed tasks and divvy them up, so that everyone is part of the support team. Adjust the list as time goes by, so that no one ends up taking on most of the work.
2. Share the situation: Another important step is to take the time to share the difficulties of a loved one's condition with extended family and friends. Talk to cousins, distant relatives, neighbors, acquaintances, church members, or even work-related groups that your ill family member had joined. If social media works for you, reach out that way. Let people know if the illness has made money a concern or share that you're struggling with balancing work and caregiving. Or maybe you need someone to simply listen to you vent. Unless people know your challenges, they won't be able to think of ways to help. Not everyone will volunteer to help, but some will happily do so if they are given a chance.
3. Find a way to get support even when it’s difficult to ask: Some may find reaching out excruciatingly difficult. However, if it's too hard to ask for what you need, don't give up. Aragon found that she simply couldn't ask directly for help. She knew the other people in her life also had struggles, and she didn't want to push hers on them. She found that a support group of women helped, because she could listen and support their struggles, which made it easier to share and find help with hers. “It was a give and take,” she said. “For me, it gets real awkward when it's always just about me and my situation.”
4. Accept help: It can be tempting to want to handle things yourself, but this isn't feasible, especially for long-term caregiving. You'll need a lot of help, and many people feel pleasure at being able to provide it. Some may even feel hurt or left out if you don't include them in requests for help. So if friends or family offer a check or a meal, take them up on it. Enjoy the assistance!
5. Be creative: If you aren't having any luck finding assistance from your family, friends, or immediate network, think outside the box. Do a google search for in-home care agencies in your area. At the starting end, caregiving agencies will charge $23 to $25 an hour, which can provide some relief. Your ill family member’s healthcare plan also may cover in-home care support. For low-income residents in California who qualify, Medical now offers grants to full-time family caregivers of approximately $2,500 a month. Additionally, you can contact Meals on Wheels, nurses and doctors at local hospitals, therapists and even churches or temples. Somewhere out there are people who can help. No matter what, don't give up. Keep looking for ways to get support, because it's vital to you and your loved one that you get it. The health of both of you depends on it.