Care for the Caregiver

Montrose Daily Press [September 24, 2017] Kathryn R Burke

Caregivers need care, too—sometimes even more than their Careé (the person they care for). When they don’t get it they are susceptible to Caregiver Burnout—a very real, debilitating medical and psychological condition brought on by unrelieved stress. Care for the caregiver is often forgotten in the emotional and physical demands of caregiving.

Caregivers face changes in family dynamics, financial problems, emotional distress, and time constraints trying to juggle personal life and work with constant caregiving. Marcie is a perfect example. Her husband, Alex, is chronically ill. They have two teenage children—one just learning to drive. Marcie’s mentally-impaired mother lives with them. Care for the caregiver just wasn’t in the mix. Marcie was in trouble.

Marcie’s friends saw the signs. If she had visited with her family doctor, he would have, too. Burning the candle at both ends, Marcie suffered from sleep deprivation, overwhelming fatigue, and energy loss. She withdrew from friends and non-essential activities. She was depressed and worried about money. The kids felt neglected. Marcie didn’t have enough time to spend with any of them. Guilt, anxiety, and stress made her cranky and irritable. Grandma can behave badly and the kids started acting out when she did. Alex needs help feeding himself. Mealtimes were a mess—literally. Marcie’s appetite disappeared. She lost weight.

Migraines and stomachaches resulting from no sleep, poor diet, and constant anxiety sent Marcie to the hospital. Which was a blessing, because she finally got some help. The doctor diagnosed Caregiver Burnout. A nutritionist suggested a healthy diet plan. A physical therapist put her on exercise regimen. While she was hospitalized, friends, family, and church members stepped in to help with Alex and her mom, and realized the enormity of what Marcie had been handling alone.

John, a social worker, introduced Marcie to a support group, whose members were on similar paths. They suggested she see an options counselor at Region 10, who provided resources and helped Marcie find homemaker and home-health agencies, which could take over some of the duties that overwhelmed her. The counselor also advised her on ways to cover the agency costs.

Alex, is a vet. Marcie discovered the VA has program that provide homemaker aides. The house was clean again! Alex’s doctor put him on hospice palliative care, which meant regular home visits from a nurse and on-call help when needed. Volunteers and VA-paid aides stayed with Alex while Marcie was at work, helping with household chores and running errands, so when she got home, so she had some free time to spend with her family. Marcie enrolled her mother in adult day care, which made a huge improvement at home. The kids had quiet time for homework after school, instead of the craziness that kept them away from home.

Marcie had vacation time coming. She had planned to spend it cleaning house and catching up on chores. But with the homemaker aides to do it for her, she spent the week indulging in personal care, walking at the park, sitting by the river with a book, and meditating—a new technique taught her by a support group member, Janine, who had beome a good friend. People who understand what you are going through as a caregiver are worth their weight in gold. When Marcie’s vacation days were over, she was rested and her house sparkled.

Fortunately, Marcie did not fall into the bad habit of self-medicating (alcohol and drugs), which plagues too many caregivers. She visits with a psychologist occasionally, who taught her relaxation techniques. Marcie attends support group faithfully and makes time to spend with Janine. They enjoy activities that are fun and interesting. They are taking a jewelry-making class and joined the photography club.

Marcie learned some important lessons, ones that we caregivers need to remember, practices we need to follow to stay healthy.
1. Make time for yourself — an hour, a day, more when you can manage it.
2. Get help. Don’t try to do it all yourself. Delegate.
3. Join a support group.
4. Research, learn more about your careé’s disease and how to manage it.
5. Advocate. Don’t be afraid to speak up about what’s best, even medically, for your Careé.
6. Reach out to disease-related organizations, forums, and support groups—in person, online.
7. Engage in companionship activities with your Careé; emotional ‘caring’ is important, too.
8. Engage in personal activities that have nothing to do with caregiving. Give yourself a mental break.
9. Eat right, exercise, get out in nature, take care of your physical health.
10.Stay positive. Positivity is the most powerful tool we caregivers have.

Despite the stress and constraints of caregiving, Marcie has found she has options, and you will too, if you get help and stay positive.

Kathryn R. Burke is the author of the Caregiver Journey series. She facilitates the Western Colorado Lewy Body & Dementia Support Group. Learn more at