Caregiving – the challenge of compassion

A caregiver, is defined by The Family Caregiver Alliance, as “anyone who provides assistance to someone else who is, in some degree, incapacitated and needs help: a husband who has suffered a stroke; a wife with Parkinson’s disease; a mother-in-law with cancer; a grandfather with Alzheimer’s disease; a son with traumatic brain injury from a car accident; a child with muscular dystrophy; a friend with AIDS.” They further distinguish between informal caregivers who are unpaid family members, who provide full time or part time care from formal caregivers, who are volunteers or paid care providers.

This column addresses informal caregivers who engage in one of the most challenging task any kindhearted loving person can undertake. The following statistics helps us understand the magnitude of caregiving in the U.S. According to the Department Of Health and Human Services, “52 million informal caregivers provide care to someone aged 20+ who is ill or disabled. 7 million people provide care to persons 65+ who need assistance with everyday activities.” National Alliance for Caregiving and AARP report that, “34 million adults (16% of population) provide care to adults 50+ years.” According to The Alzheimer’s Association, “8.9 million caregivers (20% of adult caregivers), care for someone 50+ years who has dementia.

The future numbers are expected to grow as the baby boomer generation ages. Assistant Secretary for Planning at Health and Human Services told congress that, “Unpaid family caregivers will likely continue to be the largest source of long-term care services in the U.S. and are estimated to reach 37 million caregivers by 2050, an increase of 85% from 2000.”

The majority of caregivers are middle aged and those caring for people over 65 are themselves 63 years old or older and many are in fair to poor health. For 40% of caregivers, their task spans 5 or more years and 20% have been doing so for 10 or more years.

The physical and emotional toll on caregivers is well documented. Drs. Cannuscio, Glazer, Lee and Schulz, in separate studies, found that caregivers might have impaired immune systems, elevated blood pressure and insulin levels and increased risk for cardiovascular disease. Spousal caregivers aged 66-69, have a 63% higher mortality rate than noncaregivers of the same age.

Emotionally, caregivers show higher levels of depressive disorders, anxiety, anger and other stress reactions, as reported by researchers in the “Journal of Aging and Health” and “The Gerontologist”.

So why do caregivers make this ultimate sacrifice of health and well being to improve the life of their family members? Research findings give us the data and no explanation. Personal contact provides some clues.

Most informal caregivers of the young are parents and those caring for the elderly are wives and adult daughters for whom nurturing is a second nature. They do this challenging task out of love, commitment and compassion for their loved one and in order to spare the care receiver from being cared for in an institution by non-family members. They also view their caregiving as the moral, loyal and kind treatment their child, spouse, parent, or relative deserves and any other option seems unacceptably neglectful.

The process of doing the best for the care receiver is so overwhelming and all consuming that caregivers end up abandoning their own needs. Some feel stressed and even depressed, but their needs are denied or deferred. Some accept the physical outcomes as an unavoidable price that has to be paid for doing what is right.

Scharlach and associates found that 75% of California caregivers studied did not know where to access support services, which have shown to positively improve caregivers’ well being.

If you are an informal caregiver,

• Your caring for your family member is an exceptional act of compassion, love and devotion.
• This commitment may commands a personal price of your health and wellbeing that must be recognized and handled appropriately.
• Your loved ones care about you with the same zeal you care about your care receiver and want you to be healthy and happy.
• You do not need to bear all the responsibility yourself. There are caregiver support services that may alleviate some of your burdens. Contact the organization associated with your care receiver’s condition. Local groups offer respite help, groups, counseling, information and support of others who are facing similar challenges.
• You can keep your mission and stay well at the same time, which will enrich you and all who love you.

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About Author

Offra Gerstein, Ph.D. is a licensed psychologist in clinical practice in Santa Cruz, California for over 25 years, and specializes in relationship issues for couples and individuals for improved quality of life. Her work includes: mate selection, marriage, long term relationships, gay and lesbian couples, work relationships, parenting issues, family interactions, friendships, and conflict resolutions. Offra has lectured extensively to various groups, conducted support groups for several organizations, and has been writing a weekly column "Relationship Matters" for the Santa Cruz Sentinel since 2001.

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