Who can you turn to when your caregiving responsibilities leave you frustrated, and then feeling guilty on top of it? “That’s what caregiver support groups are for,” says Sallie Carlin, executive director of Willow Gardens at United Hebrew of New Rochelle, a comprehensive geriatric care center in Westchester County, NY.
“A support group is a safe, confidential setting where you can feel comfortable saying anything you want,” says Carlin. “Forming relationships, and even friendships, with other caregivers helps you to understand that you’re not the only one going through this.”
Research has shown that learning caregiving strategies can improve the health of caregivers themselves. The Resources for Enhancing Alzheimer’s Caregiver Health (REACH) clinical trial, for example, found that caregivers who received guidance in managing their caregiving responsibilities showed a significant improvement in their overall quality of life, as well as lower rates of clinical depression.
Realizing that you may need a support group is the first step in getting help. Not everyone is willing to admit that though, says Brian Carpenter, professor of psychology in Washington University’s Department of Psychological and Brain Sciences.
“Be humble about what you know and what you don’t know,” says Carpenter. “If you’re facing new challenges, you may understandably not have the skills, resources, or knowledge that you need. You may also be feeling stressed, tired, and depressed because of the changes in your life. Don’t be ashamed to ask for help.”
Online or telephone support groups are helpful for those who are unable to find or take part in a face-to-face support group, or just crunched for time. But the experience of meeting in person with others who are in a similar situation can be particularly beneficial, says Carpenter.
“There is a level of connection when you’re in the same room with the same people with the same challenges that you don’t get online,” he explains. “There is a deeper understanding that can come from actually seeing the other person, and an emotional connection and honesty you can get from reading someone’s facial expression or body language. The conversation is often more spontaneous and free-flowing as well.”
In-person support groups offer the added benefit of giving caregivers the opportunity to get away from their responsibilities, if only for a short time. “That in itself has mental and physical benefits,” says Colin Milner, CEO of the International Council on Active Aging, whose own mother is taking care of both her 104-year-old mother and her 83-year-old husband.
“She was feeling isolated,” says Milner of his mother. “Just having an outlet to vent and to learn has been highly valuable.”
Other benefits of a “real world” support group include gaining a sense of control, learning coping skills, understanding what to expect of both your situation and that of your loved one, and receiving practical advice about community resources.
There are many types of support groups; some are for caregivers in general, others focus on specific illnesses such as Alzheimer’s disease, cancer, stroke, etc. They may be organized by another caregiver, or by a hospital, mental health association, or advocacy association. They may be peer-led, or run by a healthcare professional such as a nurse or social worker. Some are structured and are more educational in nature, offering information on a particular illness, community resources, etc. Others focus more on emotional support. And many are a combination of the two.
To find a support group:
- Ask your doctor
- Search the Internet; several worthwhile resources include the National Alliance for Caregiving, AARP, and the Rosalynn Carter Institute for Caregiving
- Contact local community agencies, religious organizations, hospitals, and senior centers.
- Ask other caregivers.
Keep in mind that support comes in many forms. “You can attend a formal support group, but it’s also important to keep a supportive network of people around you,” says Colin Milner. “Even getting together with friends who are going through the same thing to compare notes over a glass of wine is helpful.
“The biggest challenge of being a caregiver,” Milner continues, “is taking care of yourself. If you can’t function, caregiving becomes an extremely difficult task. Do whatever you have to do to get support. And don’t forget to provide support as well. There is something very energizing about sharing what you know.”
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