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Laurel Kirksey: Caregivers deserve a break

Each morning I start my day at 6 a.m. reviewing the case notes from calls that came in overnight to our 24/7 Helpline (800-272-3900800-272-3900). I end my day the exact same way. Frankly, I am frustrated. While every family and situation is different, each caller shares one thing in common — they just simply need a break.

An estimated 48,000 West Virginians are living with Alzheimer's disease or dementia. They are cared for by 108,000 unpaid caregivers. These caregivers are family, friends, and neighbors. These dedicated caregivers provide 123,000,000 hours of unpaid care each year, valued at $1.52 billion.

From coordinating care schedules to assisting loved ones with daily tasks, care partners spend every waking moment dedicated to their loved one while balancing children, grandchildren, and full-time jobs. They sleep every night with one eye open, or in front of the door to keep their loved one safe. The tightrope caregivers walk every day of keeping their loved one independent and safe would be a challenge even for the famed tightrope walker Nik Wallenda. Even with help from family and friends, this 24-hour routine is exhausting.

Fortunately, there are good things happening in West Virginia. The Family Alzheimer's In-Home Respite program provides a few hours each week for caregivers to get out and just simply run errands. Churches and neighborhoods are forming informal respite networks to help their friends and neighbors. In-home care classes are an option for students to enter this emerging field as an expert. Adult day centers are surviving. And, the Alzheimer's Association's 24/7 support and community education helps tired caregivers become sustainable caregivers.

However, despite having one of the oldest populations in the country, West Virginia lags significantly behind other states in our continuum of care and support for seniors, especially those facing Alzheimer's or dementia.

Across the state the Family Alzheimer's In-Home Respite program faces significant waiting lists. We are the only state in the entire country that does not have an adult day center that accepts state or federal reimbursement. In 2011, then-Gov. Manchin froze the Medicaid Aged and Disabled Waiver program. Today the waiting list for this program exceeds 2,000 people. In West Virginia only 13 licensed dementia specific units in long-term care facilities exist.

As you are reading this, the article in a nearby column is more than likely about state budget cuts, and our state's looming deficit. You may be saying the same message we hear from a number of our legislative leaders. You care about seniors, but there is no money right now to support expanding or supporting these programs.

My apologies, this is my frustration speaking, but give me a break.

West Virginia has a golden opportunity to be almost heaven for the next generation of retirees, the baby boomers. But, in order to keep people here, our state cannot afford to ignore the needs of our seniors and our caregivers. A healthy continuum of care options enables caregivers to stay in the workforce. A healthy continuum of care provides jobs for nurses, social workers, certified nursing assistants, accountants, executives, human resource professionals. A healthy continuum of care helps keep individuals safe and caregivers healthy. A healthy continuum of care decreases hospital visits and expensive hospital readmissions. An economic study of the Medicaid Aged and Disabled Waiver program indicated an investment of $13 million to cover the individuals on the waiting list would yield a potential $60 million economic benefit to the state.

Mahatma Ghandi once said, "A nation's greatness is measured by how it treats its weakest members." Caregivers need a break; individuals with Alzheimer's and dementia deserve the highest quality of care that meets their changing needs.

Everyday caregivers and the loved ones they care for rise to meet the great challenges they face. It is time our state rises to meet these challenges as well. The economics are clear, we can provide a continuum of care options while growing economically and creating sustainable jobs. Just give us a break.

Kirksey is executive director of the Alzheimer's Association, West Virginia Chapter.


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