The Strength to Give

My cousin cared for his wife, at home, for seven years as she slowly died from frontal temporal degeneration, an incurable neurological disease. He has Multiple Sclerosis himself. Instead of golden years of retirement together, he and his wife both faced incurable illnesses. During those long years before his wife's quiet death this past spring, I often wondered how he and other caregivers find the strength, patience and hope to care for a loved one with a terminal illness.

In addition to taking her to doctor's and therapy appointments, my cousin offered daily kindnesses I can hardly fathom. It took 90 minutes for him to feed her at each meal. In addition to bathing her every day, he washed and styled his wife's hair as she would have done herself. He went to Nordstrom's cosmetics counter to learn how to apply her makeup (and did a good job, too). He recorded Oprah and Ellen and watched them with her long after she stopped speaking. He took her to visit her only child, a daughter with a young baby, as often as possible. He would tell you that he did all this because he loved her, because he knew she would have done the same for him and because he couldn't bear to have her in a nursing home.

He was exemplary with her care, but it was far harder for him to help himself. He hired a certified nursing assistant to help a few hours a day, and friends from his church and hospice pitched in at times. It is only now, after her death, that he has been able to ask for help and support for himself.

My cousin recommends asking physicians and local hospitals what support services and networks are available to caregivers. As usual, AARP offers a slew of resources and information relevant to health care, financial management, and support services. My former employer, Johnson and Johnson, established a wonderful, free online support center to help caregivers facing similar challenges called Strength for Caring, supported by The Caregiver Initiative. The site offers information about common, debilitating health problems such as dementia, cancer, Alzheimer's, HIV, AIDS, and diabetes, a housing comparison chart, advice about legal, financial, insurance and end-of-life planning, as well as message boards and personal caregiver stories that help caregivers feel less alone each day.

My experience in caregiving is limited to raising three babies (now young children) -- lonely, frustrating and at times frightening work, but joyous, too. Although some will attack me for my honesty, the truth is I'm not sure I could care for my husband full-time by myself if he fell ill. I would need lots of help. I wouldn't hold it against him if he could not care for me, either. But we will face these issues one day -- and with an aging baby boomer population, more and more of us are tackling the tough questions of how to care for ill family members.

What about you? Have you cared for a seriously ill or terminally ill relative? What keeps you going? How do you find balance? What online or other support can you recommend? How can our communities, businesses and government help caregivers more?

By Leslie Morgan Steiner |  August 15, 2007; 7:00 AM ET  | Category:  Conflicts
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