Care for caregivers: Many put their own physical and emotional needs aside

05/31/2014 2:50 PM

08/08/2014 10:24 AM

Caring for someone shouldn’t mean you stop caring for yourself. But experts say too many caregivers often put their own physical and emotional needs aside when they start caring for someone.

So much so that about 60 percent of caregivers die before the person receiving the care does, said Joan Brubacher, a licensed specialist clinical social worker who’s been working with caregiver issues and caregiver support groups for the past decade.

“You can’t overstate to caregivers how important it is to take care of themselves,” said Brubacher, who is on the staff of Prairie View, a Newton-based mental health provider.

High levels of stress can lead to chronic health problems and burnout for caregivers, experts say.

As many as 70 percent of Alzheimer’s caregivers, for example, develop more than one unhealthy condition or disease, said Linsey Norton, program coordinator with the local Alzheimer’s Association office.

“I tell individuals that in order to take care of a loved one, they have to take care of themselves,” said Connie Mansaw, caregiver program coordinator for the local agency on aging. The agency offers various caregiver resources, including support groups and respite relief.

“Self-care is important. If you are taking care of someone who is depending on you, what happens if you’re not taking care of yourself? Then there’s two of you in need,” Mansaw said.

Susan DuPerier knows how stressful caregiving is, but she learned early that getting help and “coming clean” about her husband’s diagnosis was helpful. Three years ago her husband, Wes, was diagnosed with Alzheimer’s disease.

“I’m trying to do everything I can to take care of myself,” said DuPerier, who quit a full-time job at Green Acres, a natural foods market, to help care for her husband. She still works there one morning a week, as a way to stay connected to co-workers and do something she enjoys.

Sharing her husband’s diagnosis with co-workers, friends and others has helped, she said. From her hairstylist, for example, she found out about an adult day care facility. Now she takes her husband there at least once a week. She often uses those breaks to go to work or enjoy some quiet time at their Wichita home.

Brubacher and other experts offer these tips for keeping caregiver stress and burnout in check.

• Ask for help. Caregivers can’t do it all alone, Brubacher said. Sharing a diagnosis with others will often bring an offer of help, so take them up on it.

“A lot of people have a fear of asking, but most people are sincere about helping,” said Mansaw.

“Everybody wants to help. It’s a natural reaction,” said Terry Ercolani, an engineer with Cessna who found himself in a caregiver role when his wife, Deanna, was diagnosed with breast cancer in March 2011. “I got to the point where I was ready with an answer. It helped to be specific.”

For example, he knew he needed help preparing meals for the couple and their four children. He used the online site www.takethemameal.com to coordinate donations of meals.

• Keep social connections. Don’t give up your network of friends. When Diana Thomi, executive director of the cancer resource organization Victory in the Valley, was a caregiver for her mother, who was battling breast cancer, she was reluctant to do things with friends for fear of something happening while she was out. It was her mother who finally persuaded her to accept a friend’s dinner invitation. She remembers laughing, enjoying conversation and even more so, how happy her mother was to have her share highlights of that outing.

“I began to see the value of doing something normal in an abnormal time,” Thomi said. “When I was refreshed, I was a better caregiver.”

Taking a break from caregiving also means the care recipient gets the benefit of someone else’s company, whether it’s in-home respite care or at an adult day care, Brubacher said.

• Stay healthy. Stress can compromise your immune system so eat healthy, exercise regularly and take care of your own wellness and preventative screenings, Brubacher said. For the DuPeriers, walking continues to be an activity they both enjoy. As a self-professed “health food hippy,” Susan DuPerier also makes sure they eat nutritious meals. Too often caregivers only pay attention to the medical care the care recipient needs and they don’t schedule regular wellness and preventative care checks for themselves. Don’t wait to see a doctor until a health condition becomes catastrophic, said Brubacher.
• Take a break. Caregiving tends to be a 24/7 job, but you need to carve out some time for yourself. “Even 15 minutes a day to yourself will do wonders for your mind, body and soul,” said Mansaw of the local aging department. “Maybe its nothing more than going into a room and closing a door to read a magazine.”
• Do something you enjoy. Becoming a caregiver doesn’t mean you should give up all the things you really enjoy. For Terry Ercolani, being a Scout leader was an important part of his life and a way to help him keep a sense of normalcy while dealing with his wife’s cancer. With the help of friends and family, he managed to go on his troop’s annual camping trip for a few days while his wife underwent treatment.
• Stay organized. Use calendars and other tools to remind yourself of appointments and activities. Being disorganized and missing appointments or medication times will add to your stress.
• Become knowledgeable. Read books and blogs and talk to professionals about your care recipient’s condition. DuPerier said she often uses the advice she’s read in books such as “The 36-Hour Day” and “Dr. Ruth’s Guide for the Alzheimer’s Caregiver.”
• Use community resources. A number of nonprofit and government agencies offer resources for caregivers. Generally, the most common resource offered is a support group, where caregivers can get together and share insights and information.

“People in a support group who are in a similar situation are very affirming and they can provide some really good solutions,” Brubacher said.

In Wichita, for example, the Alzheimer’s Association, Victory in the Valley and the Central Plains Area Agency on Aging offer support groups for caregivers of Alzheimer’s patients, cancer disease patients and the elderly, respectively. Many departments on aging offer caregiver respite programs, where one can receive a few hours a week of free respite care.

• Savor the moments. Too often caregivers give in to feelings of guilt, anger or remorse. “Note those moments of joy and plan things to help inspire those special moments,” Brubacher said.

For the DuPeriers, cranking up the music and dancing around the house has provided some special memories, Susan DuPerier said.

Focus on the positive aspects of caregiving whenever possible, Brubacher said. “Think about how wonderful it is that you are taking care of another human being.”

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