Caring for the caregiver: Focusing on self helps everyone in long run | by Kelly Pate Dwyer


Posted on Thu, Jan 16, 2014

Sharon Gordon works full-time and handles most household tasks since her husband, Mac, 57, was diagnosed with amyotrophic lateral sclerosis, or ALS, in November 2012. Their son works full time and their daughter is in college, but they help out when they can.

Sharen Schmidt has been caring for her daughter, along with her husband and son-in-law, since the young woman suffered a severe brain injury in early 2012. Until a night nurse arrives at 11 p.m. each night, the trio is always “on.”

Although the situations differ, these and other caregivers face similar hardships. Finances might be tight, emotions and stress can run high, and time to care for themselves is sorely lacking. Oftentimes, caregivers develop health problems of their own.

“Caregivers are at greater risk for stress and depression and, as a result, increased illness,” says Dr. Monique Giroux, co-founder of the Englewood-based Movement and NeuroPerformance Center of Colorado, which takes a holistic approach to helping patients and their families.

Movement and NeuroPerformance Center of Colorado

Dr. Monique Giroux says caregivers of the ill and disabled must make focusing on themselves a priority.

Indeed, one in five family caregivers suffers from depression, according to the National Center on Caregiving. And 17 percent of the 65 million Americans – many of them baby boomers – that serve as unpaid caregivers said their health was “fair to poor,” compared with 13 percent of the general population, according to a 2009 report by the National Alliance for Caregiving and AARP.

Here are a few tips to caregivers for staying emotionally and physically well:

Reframe your relationship

Shift your perspective, and view caregiving as “carepartnering,” says Giroux, explaining that relationships often lose fullness in light of illness or injury. For example, if you’re a husband caring for your wife, recognize the value she brings to the relationship. If you are a wife being cared for, respect your husband’s needs and do what you can to maintain your health. This empowers both parties and can reduce stress, resentment and other negative feelings.

Set carepartner ground rules

If you feel like you are nagging your aging mother to do her physical-therapy exercises, then she might think so, too. Then you both end up frustrated. Giroux suggests coming up with a catch phrase your mom can use if she’s just too tired one day, such as “I’d rather have a cup of coffee.” You know she’s acknowledged the reminder, but you respect her response and move on.

Create quality together time

Mac & Sharon Gordon

Mac & Sharon Gordon

Don’t let illness or injury spoil your relationship. “Find moments where you can be together that represent the relationship that was, and still is,” Giroux says. For Gordon, even though ALS zapped her husband’s energy and made speech difficult, they find couple and family time watching TV together or going for walks. “I’ll push him in the wheelchair, and my daughter will walk the dog.”

Plan ahead

Anticipate problems with your caregiving role and create possible solutions, so you don’t feel out of control when and if those problems occur. Plan for the long-term as well, Giroux advises. What will happen if you no longer can care for your loved one? What resources are available to help? Ask your medical provider to connect you with a nurse or social worker to discuss these issues.

Simplify your schedule

Make a list of things you used to do before you started caregiving. Say ‘no’ to lower-priority activities and “yes” to what’s most important and enjoyable to you. Book club seem frivolous? Not if it helps you relax, laugh and enjoy the company of friends.

Ask for and accept help

Remember that friends and family feel good when they can help. Give them a specific task or errand. You get what you need, and they don’t struggle to decide how to help.

Seek support

Many caregivers find value talking to someone in a similar situation, be it through a caregivers’ support group or connecting one-on-one. “We don’t have our friends here,” says Schmidt, noting that she and her husband, Volk, normally live in California. But for now, the couple lives with their daughter, son-in-law, Paul, and 7-year-old granddaughter, Emma. “When the (nurse’s) aids come, we share stories, and it straightens my head a little,” she says. A therapist also visits every two weeks to talk with the whole family.

Keep up your physical health

Don’t forget to schedule yearly physicals, dental and other health care appointments. Eat well, exercise and get as much sleep as possible. The payoff is more energy and less stress, which helps everyone.

Recognize signs of depression

Depression is common among caregivers, so seek help if you are feeling overwhelmed, cannot sleep or notice a change in your eating habits.

Seek out skilled help

Be realistic about what you can handle as a caregiver and how your loved one’s needs are being met at home. Consider hiring a nurse or nurse’s aide to give you a break, and research respite services in your area. Expenses run high, but Medicaid or Medicare help pay a portion of costs in certain situations.

Practice self-healing

Set aside ‘you’ time every day, even for just five minutes. Have a cup of tea, talk to a friend or keep a journal. This honors your needs and can help revive your energy. For instance, Gordon sometimes takes breaks to work on her photography. “I can just sort of forget about everything else for a while,” she says.

Be present and find the positive

Remember that planning is important, but so is being present. When your thoughts are right here, right now, it can help you from feeling overwhelmed and allow you to fully experience a beautiful sunset or laugh at a funny joke. Schmidt’s bright spots are simple: her daughter’s smile and the light her granddaughter brings to their lives, every day. “Emma is unquestionably full of love. She will say, ‘Opa, you are sad,’ and make a funny face. That makes us all laugh.”

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