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HEADINGS 

"Helping Elderly and Disabled in Need Gain Support"

  A West Virginia Based Advocacy Group

Monthly column featured in Two Lane Livin' Magazine - 2011 Archives

April 2011 - Caregiving takes a toll.

Back in 1998 when we lived in Texas, while helping care for my husband’s grandmother who suffered from Alzheimer, my sister’s husband suffered a spinal cord injury on Memorial Day at Bee Run, in Sutton, West Virginia. Just an hour before, he had called to say they were going swimming. An hour later he went from a physically active employed worker earning a living for his family to a paralyzed, flat on his back, hospital patient for over three months, until he was stable and well enough to be “allowed” to come home. The option for my sister was either to learn how to care for him and prove it to the doctors, or he would be transferred to a nursing home. She spent hours at the hospital learning what was necessary to ensure his return.

We didn’t know their income was reduced to $30 per month SSI. I was horrified to learn she was sleeping in CAMC’s parking lot in Charleston , West Virginia , because she could not afford lodging or gasoline. Our low income disabled parents were watching her two children during the ordeal. My husband finally said, “Your family needs help more than just sending money. Before he comes home, a ramp must be built, and the house made wheelchair accessible. Also, your mom and dad aren’t in the best of health, and your sister and brother-in-law aren’t going to be able to do much for them, especially now with her having to take care of him, two kids, AND your parents.”

I agreed, but was concerned about his mother. We’d moved in the year before to help her, and planned on building the following summer. She wasn’t dealing well with his grandmother’s Alzheimer, and refused to consider a nursing home, insisting she’d care for her alone if necessary. Caring for her mother was taking a terrible toll on her health and she couldn’t afford to hire help. He told me not to worry, that his sister, who lived nearby, would help out with his grandmother. Since we would be moving in with my parents and our house was just about to be built, we sold the vacant property, most of the furniture, and moved from a city of 4 million people to a state whose population was 1.8 million; where over 22% of the people were disabled and 20% over the age of sixty.

Well, we weren’t the only ones making the leap across the chasm of fear to an unknown future. The National Alliance for Caregiving in collaboration with AARP stated, as of November 2009, “More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one.” The impact on caregivers’ physical and mental health, work performance, savings depletion, and other stress factors clearly demonstrates their need to TAKE and MAKE time for themselves.

Shortly after arriving in West Virginia , we recognized the need for advocacy for the elderly and disabled, and formed HEADINGS, an acronym for “Helping Elderly and Disabled in Need Gain Support”. For several years we strongly focused on Aged Disabled Medicaid Waiver issues to help reduce expenditures, including exorbitant senior center directors’ salaries. During that time period we met frequently with the Governor’s office, Department of Health and Human Resources, as well as the legislature, where we were asked to attend and speak at various meetings and hearings.

By the summer of 2003, we were exhausted. My mother’s health was failing fast. Her strength gave out, and she succumbed from COPD in December 2003. We were forced to limit our advocacy. Dad was having more heart and lung problems, requiring me to help clear his lungs throughout the night. It didn’t make for much sleep. He succumbed in March 2007. We all like to think that if it had not been for our constant caregiving and persistence in obtaining quality health care and proper medical treatment that he probably would not have lasted as long as he did. We learned a lot during our vigils. Because of our personal experience, we have been reaching out to other caregivers and their families for over 12 years now. 

Since 1998, the prevalence of disability in West Virginia has risen to 26%. Our population continues to age, gain weight, and have higher incidence of diabetes, all which can result in increased future disability, resulting in lower quality of life for both the caregiver and those receiving care. As reported in the Evercare Study of Caregivers in Decline: A Close-Up Look at Health Risks of Caring for a Loved One, as reported in the National Alliance for Caregiving and Evercare 2006, “Nearly three quarters (72%) of family caregivers report not going to the doctor as often as they should and 55% say they skip doctor appointments for themselves. 63% of caregivers report having poor eating habits than non-caregivers and 58% indicate worse exercise habits than before caregiving responsibilities.”

The emotional toll resulting from caregiving is extraordinary. Life itself is a full time job. Besides the needs of a “regular” job, as well as the needs of children, spouse, friends, plus extra curricular activities, the duty of a caregiver for a dying parent, injured spouse, or mentally challenged child adds such burdens as to defy description. It is no wonder that “40% to 70% of family caregivers have clinically significant symptoms of depression with approximately a quarter to half of these caregivers meet the diagnostic criteria for major depression,” as noted by S. Zarit (2006) in Assessment of Family Caregivers: A Research Perspective.

If you’re a caregiver, PLEASE find time for yourself. You’re just as important, probably more so, than the person receiving your care. It’s imperative that YOUR health come first. We’ll be providing helpful resource information, caring tips, and more. So, be sure to read next month’s column! For additional information, please visit http://www.headingswv.com.

Dawna Smith

Freelance Writer and Journalist

Founder of HEADINGS