Care for the caregivers

Dec 9th, 2011 | By | Category: Recent Pioneer Press Columns

As seen in the St. Paul Pioneer Press on December 9, 2011.

Molly Cox

We know them. We are them. The people who change parents’ Depends; sit with children through chemotherapy; answer the same question from a spouse over and over. Caregivers are the bone-tired folks who attend to others’ basic needs, often while balancing family responsibilities, not to mention employment.

Unpaid caregivers often step in after learning a loved one has Alzheimer’s, cancer, autism, cerebral palsy, an eating disorder, addiction and more. In addition to grappling with the diagnosis, they provide emotional and financial support and assist with intimate needs such as bathing or toileting.

The Family Caregiver Alliance (www.caregiver.org) provides the following profile: Roughly 66 million adults provide care for someone who is ill, disabled or aged, 44 million of them unpaid. Most such caregivers are women, although more men are assuming the role, particularly for younger individuals. The average caregiver is close to 50, so she or he may be raising children as well.

On average, caregivers devote 20 hours per week unless they live with the patient or care for a child, in which case the time commitment is even greater.

The duties take a toll. “A substantial body of research shows that family members who provide care to individuals with chronic or disabling conditions are themselves at risk. Emotional, mental, and physical health problems arise from complex care-giving situations and the strains of caring for frail or disabled relatives,” reports the Family Caregiver Alliance.

Studies demonstrate the longer a person provides care the more his or her health suffers. Moreover, a large percentage of caregivers experience symptoms of or are diagnosed with depression. While drug and alcohol use often increase, healthy eating, sleeping, exercising and socializing are neglected. Anxiety ramps up while self esteem declines. Finances are strained.

Minnesota author and speaker Molly Cox is an accidental caregiver. She began by caring for her mother when she had cancer. Today she cares for her father, who has Alzheimer’s. “I didn’t choose to be a caregiver. It chose me,” says Cox. She considers care giving an honor that provides a sense of purpose, particularly when a parent has a terminal illness. Yet she is mindful that even the happiest people can become exhausted when the demands become overwhelming.

“When you are dealing with a dementia patient, you’re getting calls five, six times a day. Imagine the toll it takes on the single mother taking care of kids and an aging parent, holding a job where she can’t make phone calls or take off a half day without losing pay,” Cox says.

“Whether you are taking care of your mother, a special-needs child or a spouse, everyone has the same experience that generates a common response,” she says. “If you ring that bell one more time … if you ask me to do one more thing … Everyone experiences it. Only half of the people talk about it.”

Recognizing the tension between honor and duty, Cox resolved to share a hard-earned lesson: It is critical to take care of yourself when you take care of others. So she produced a film entitled “Note to Self” (www.mollyspeaks.com), drawing upon her own experiences and those of other experts.

Created for both professional and family caregivers, “Note to Self” includes insight as well as action steps. “It’s critical to recognize our limitations and to develop a support system. Asking for help is one of the hardest things in a caregiver’s life,” she says. “They are almost too busy to ask for help.”

Surrounding yourself with the right people is paramount. “Allow yourself the permission and the time to be with people and to connect with people who can make you laugh,” Cox told me. Otherwise, she cautioned, it is easy to “get inside yourself and become depressed. People rub off on you — good or bad. Are you with energy suckers or are you with people who support you, lift you up and make you laugh?”

Licensed psychologist and family caregiver Nancy Van Dyken observes caregivers are so concerned about doing a good job they frequently neglect themselves, sometimes due to pressure from the patient. She found that taking a short break with her daughter refueled her, despite pressure to remain at her mother’s side.

Dale Anderson, a family practice physician and surgeon, has studied the impact of emotions on health. “Many studies show that happiness or an emotion spreads like a virus,” he says in the film. “With PET scans and functional MRIs I can show you the map of an emotion” — happiness, sadness, anger. “And they can be changed.”

“The healthier our emotions, the more we have to offer others,” says Cox, who has observed a difference in how happy and toxic caregivers care for her loved ones. From both family and patients’ perspectives, a cheerful disposition goes a long way, she says.

A humorist by profession, Cox says, “Laughter benefits the heart, blood pressure and mood and releases endorphins, which are free drugs with no co-pay.”

Caregivers, start this holiday season. Give yourself the gift of permission: to savor a healthy meal; take a walk; romp with kids in the snow; or do the unimaginable — enjoy a massage or a nap — guilt free. Most importantly, embrace humor. Laugh. Loud and often.

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9 Comments to “Care for the caregivers”

  1. Liane Carter says:

    There’s an innovative new website designed specifically for caregivers called Caregiver Village. I moderate a discussion group for autism caregivers, and there are discussion groups (called book clubs) for caregivers dealing with ADD/ADHD, Alzheimer’s, arthritis, cancer, depression, diabetes, general aging, general caregiving needs, heart disease, mental and developmental delays, mental/emotional illness, Parkinson’s, physical disabilities, stroke, surgery, injury or wounds, and war-related injuries. Please check it out at
    http://www.caregivervillage.com.

  2. Jan Luker says:

    Great article, Caryn! I always enjoy reading these!

  3. Connie Anderson says:

    Caryn, you really captured the emotional and energy-sapping role of caregivers, and how important it is for them to take care of themselves. Another aspect of caregiving is handling the financial demands for their care, as well as the fact the caretaker usually takes over a parent’s financial life–another job that takes time, energy and focus. So many demands on his or her time, and only so many hours in the day. For anyone who takes over the care of a parent, one of the unique reactions is to the role reversal that sneaks up on us. Bless those wonderful caretakers.

  4. Terry Joseph says:

    GREAT! I love it. Congrats and thank you.

  5. Great job, Caryn and… Molly!
    I very much enjoyed reading the article and learning a ton about care giving.
    This, “Surrounding yourself with the right people is paramount” applies to all of us in all situation, but those who care for others need extra love, understanding, and … FUN!

    Thank you,
    Chez

  6. Lori La Bey says:

    Wonderful article. A topic which needs to be talked about much openly and honestly with both family and professional caregivers. Society at large is struggle with juggling the demands of giving care not only physically but emotionally. Training for caregivers needs to become a priority, to help them balance and get into perspective the actual task at hand, and they hows, whens and whys of getting it completed,

    In the US in particular, we are awful about asking for or pulling help in when giving care to another. I think most people view it as a sign of weakness. Not true. We can typically give optimum care only when we feel our life is in balance. We are not at our best when feeling overwhelmed and tired.

    Kudos for Molly making the film “Note to Self.” It is an excellent training tool for both family and professional caregivers. I think every organization and business should look seriously at training their staff, volunteers,and families; because Caregiving effects every nook and cranny of our lives and our businesses.

    http://www.AlzheimersSpeaks.com

  7. [...] The film is called “Note to Self.”  Here is an article which will tell you a bit more about Molly and her film.  Below is the trailer to the film. Share [...]

  8. Caryn,
    I can relate. An accidental caregiver myself, I feel grateful that I have a sister who shares the responsibilities with me. Your suggestions for taking care of ourselves mentally and physically are excellent. The financial aspects are as varied as the families involved and could easily be the subject of another article. The rewards–are priceless.

  9. Matt says:

    Caryn,
    Nice job conveying the perils and challenges of caregiving. Your point about it taking teh toll on the caregiver as well as the patient is real, especially in situations where elderly help elderly. There are no easy answers and we all hope that none of us will require caregiving, but its not always a choice, unfortunately.

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