You're Not Alone
Caregivers find hope, friendship, and practical advice by connecting with peers in support groups
Families, health professionals, and policy makers alike are seeking solutions to the myriad problems caregivers face, including declining health, work absenteeism, and financial and mental stress.
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Caregiving can overwhelm even the most dedicated among us. With seemingly too few hours in a day to accomplish the tasks at hand, caregivers often neglect their own needs, which can have a major impact on their health and well-being.
With demand for caregiving expected to rise significantly as our population ages — the 65-plus age group is projected to be 71 million by the year 2030, according to the Administration on Aging — families, health professionals, and policy makers alike are seeking solutions to the myriad problems caregivers face, including declining health, work absenteeism, and financial and mental stress.
Agencies such as the Riverside County Office on Aging offer help, but experts agree that some of the best advice comes from caregiver support groups.
“There is nothing that works as well as being able to talk to people who are also in your shoes; it’s a strong way to help people deal with these [sorts of] issues,” says Beverly Greer, CEO of the Stroke Recovery Center in Palm Springs, a nonprofit organization offering caregiver support groups twice a month.
Connecting with others who are in the same situation is crucial to coping, says Denise Latini, nurse manager at the Five Star Club, an adult daycare center through Eisenhower Medical Center that cares for people with Alzheimer’s and dementia.
“The positive aspect is that there is hope, and you’re not alone,” she says. “You don’t have to do this by yourself. You cannot do this by yourself. You really need to build a support system.”
By sharing their experiences, Greer says family members are better able to come to terms with the rash of emotions that often arise.
“It’s important for caregivers to not suffer from guilt,” she says. “They need to have an outlet to be able to express their anxieties, to express their stress, and to alleviate and educate themselves so that they can handle this better. There is a tremendous amount of guilt from a caregiver because they may feel angry and they may feel put upon. It’s kind of a ‘Why me? Why did this happen to me?’”
Latini notes that this is especially true of those caring for a family member suffering from Alzheimer’s.
“It affects you emotionally, physically, financially, and spiritually,” she says. “It depletes you of everything you have. We offer a support group — it’s a safe haven where we teach you to take care of yourself. We always liken it to when you get on a plane and the airline stewardess comes out and says when the air mask drops, you put it on yourself first, because you have to be strong and healthy before you can take care of your loved one. Statistics show that 70 percent [of caregivers] will burn out.”
Educating caregivers about practical matters is an important part of the support group process.
“Alzheimer’s patients forget that they have a disease and they don’t know any better,” Latini says. “We teach the caregiver that number one, it’s not their fault that this journey is going to be bumpy. It’s a moment-to-moment disease. We have a to-do list because many people, when they get the diagnosis, the medical community really doesn’t have answers. You’re going to get your answers and solutions in the trenches with people who are going through the same thing that you’re going through.”
Groups discuss coping strategies, how to organize legal affairs, and finding a psychiatrist, neurologist, or primary physician. Latini recommends reading The 36-Hour Day, a reference book that serves as an excellent resource for dealing with new and unfamiliar topics.
For example, “If you’re experiencing a situation where your husband still wants to drive, it gives you pointers and tips on how to talk to your loved one about why it’s not OK to drive anymore,” she says.
Latini notes that backup plans are also important.
“If something happens to your loved one and you’re the sole caregiver, what happens if something happens to you?” she says. “Can you rely on a family member? Do you have a place already arranged where your husband, your wife, your mother, your father can go? We don’t think about the things that are coming down the pike because we’re trying to deal with the situation at hand. We talk about the emergency plan, and it has to do with doing your homework. That’s really important.”
Greer says this peer-to-peer sharing also allows caregivers to delve into subjects they can’t discuss with anyone else.
“As professionals, we can say, ‘You should be doing this,’ but to have the ability to [talk] with a group of people who are going through the same things that you are going through, and being able to compare — down to the real nitty-gritty types of stuff, like how do you transfer somebody out of a bed — these are huge issues when you’re a caregiver,” Greer says.
“In our support group, we started a mentoring group because it’s so difficult to pick up that 100-pound phone and say, ‘They’re doing this. I don’t know what to do,’” Latini adds. “Our mentors will stay in contact with our caregiver. Sometimes, we just need somebody to vent to because our family members and our friends have the attitude of, ‘Oh, he’s not that bad. He seems perfectly fine.’ But they don’t understand; they’re not living with them 24 hours a day, and they don’t see the behavior behind closed doors.”
Many members of the Alzheimer’s group return even after losing their loved ones to seek — and offer — support.
“They are the experts,” Latini says. “You can’t really understand until you have lived that disease and are part of it. They have solutions, they have the empathy, and they are there to give everything they have to help you.”
“Somehow, asking for help, we’re viewed as helpless and weak, and that’s not what it’s about,” Latini continues. “There’s a lot of laughter. Of course it’s very serious, but there’s so much laughter along with the peers in there. We teach you how to get rid of that stuff, and they connect because they’ve lived it, they’re going through it, and the whole process of bonding is just amazing.”
If you’re not taking care of yourself, you’re no good as a caregiver, she adds. “You can’t do it. You’re overwhelmed. You’re angry. Nobody is Mother Teresa. You did not create this. We just want to teach you how to cope with it. We want people to know there is hope out there and you’re not alone.”