Strangely enough, when someone suffers from a stroke or other debilitating ailment, at least two people end up needing help—the sufferer and the caregiver.
But often, caregivers, who may be spouses, children or other relatives, are so focused on the needs of their ailing family members that they forget about their own needs as they look for help. In fact, many don’t even realize that it’s important to call themselves caregivers.
“Most of us call ourselves daughters, wives—’I’m not a caregiver; that’s my mom,’” said Donna Benton, the director of the USC Family Caregiver Support Center. “If you use the word caregiver or informal caregiver or family caregiver or unpaid caregiver, all of those will get you to the right services. About 80 to 90 percent of care is by the informal caregiver—you have to self-identify and if you are helping someone with basic tasks, then you are a caregiver.”
While there is no typical caregiver, 60 percent work either full- or part-time and many also spend more than 20 hours each week providing unpaid care, although almost half provide less than 8 hours a week of support, according to the Family Caregiver Alliance. On average, caregiving duties last for 4.3 years and about 50 percent of caregivers go it alone despite the emotional, health and financial strains. These strains include on average more than $659,000 in lost income and doubled rates of heart attacks, cancer, diabetes and arthritis versus non-caregivers due in part to lowered immune system response and increased exhaustion, anxiety and depression.
When people call the USC Family Caregiver Support Center for assistance, they generally are seeking services for their loved ones, ranging from information on the best doctors to ways to get meals delivered, Benton said. The center helps with those requests, but the assistance doesn’t stop there.
After answering questions about a loved one’s needs, “we will in turn say, ‘How are you? What can we do for you?,’” Benton said. “If the caregiver isn’t supported, you have two people who are going to be lost.”
So if you find yourself caring for a family member or friend, what are the steps for getting help not just for your ill loved one, but for yourself?
1) Go online
A first step is reaching out to your local Department of Aging by doing a quick web search and visiting its website to learn about local assistance. The Family Caregiver Alliance (caregiver.org) also provides a good starting point for both your loved one and yourself. In addition, benefits.gov and benefitscheckup.org can help you determine what services your loved one should be able to receive, while eldercare.gov is another good resource. The USC Family Caregiver Support Center (www.fcscgero.org) also offers personalized assistance to caregivers who register for a free program, CareJourney.
2) Write a List of Needs and Wishes
Make notes of the needs and desires of both you and your loved one. Usually, the list for your loved one is easy to do, while the latter is more challenging. But since caregiving is typically an endeavor that lasts for several years, taking care of yourself is vital. “You can drop things for 3 to 4 days, but caregiving is usually 3 to 7 years,” Benton said. “You can’t put your life on hold for 3 to 7 years. If you do, you become isolated and worn out. What are you going to need to be a long-term caregiver? What are the options for backup? Set those types of things up.” Make sure to also check into the legal necessities, financial needs, healthcare issues and your work requirements, such as flexibility if you may have to take time off.
3) Address these Needs
To handle the list of needs requires both research and making connections. You will want to check with the health insurance company (read the policy), Medicare, and various organizations ranging from Meals on Wheels to local senior services for the elderly. Transportation for those with disabilities might be provided by your city or may need supplementation through Uber or Lyft. Churches, temples, or other local organizations can provide help. Caregiver organizations may have free classes, paid for by your tax dollars, to help you learn the new skills to both care for your loved one and yourself. Reach out to people—friends and family—who may be able to act as backups and take over some of the caregiving.
4) Contact Specific Resources
Depending on the ailment, particular foundations may be able to provide special assistance or support groups. For example, people who have Parkinson’s disease or diabetes can contact the disease’s connected association for help, which might include help for caregivers, such as respite care or support groups. Veterans also qualify for specialized assistance through the Veterans Administration.
5) Develop a Team
The team will include groups you discovered through your research, including a wide variety of people, such as friends, a taxi company, wellness centers or firefighters who can help with someone who falls and needs help getting up. In addition, sometimes friends or family offer help, but don’t know specifically what to do. Refer to your list of needs/wishes and tell them specifically what you would like. Perhaps cooking is too much and you’d like some frozen meals on hand to heat up when needed. Be gracious if they say no, and try to give people enough time as it is much harder to accommodate a sudden request then one that has adequate preparatory time. Whatever you may need, put that request out there, because if the need isn’t voiced, no one will know you need help.
As a caregiver, you’re on a new journey with your loved one that requires connection to a broader community. You may have to step out of your comfort zone to manage it in a healthy way. As Benton says, “Just remember you can do anything, but you can’t do everything.”
Kathi Koll is the founder of The Kathi Koll Foundation and author of Kick-Ass Kinda Girl: A Memoir of Life, Love and Caregiving. Please visit KathiKollFoundation.org or KathiKoll.com to learn more and read an excerpt.