Shelly from Arkansas

SHELLY'S CAREGIVING STORY
From Arkansas

In caregiving, long-term family roles are often reversed; it's been said that "The parent becomes the child, and the child becomes the parent." This is what happened to my mother and me.

Mother's hip fracture and subsequent surgery, rehabilitation and recuperation began the process, and it continued for the next two-and-a-half years as her health deteriorated until her death.

I lived 220 miles away from Mother when I learned of her hip fracture. She was 82 at the time and had been living independently and alone in her large house on 95 acres after my father's death from Alzheimer's disease three years earlier.

It was important to my siblings and me that Mother remain in her home for as long as possible, so I -- being the oldest child and nearest to retirement age -- quit my job and moved in with Mother to become her 24/7 caregiver.

Making the decision to care for Mother meant leaving my own home, job, church and friends to devote my life to her and help her get back on her feet. It was a quick decision because I knew she needed me, but a hardship financially. I had no income (it was too early for me to draw Social Security) and no health insurance, yet my car payment and mortgage payment continued, along with taxes, homeowners insurance and more.

I began drawing from my retirement savings to pay my personal bills, but finally after five months, I asked Mother if she could pay me something. I recall she seemed surprised at my request. I suppose she hadn't realized my financial situation, and I hadn't complained. From this point on, she paid me $1,000 per month. Certainly that was much less than costly nursing home care.

The next two-and-a-half years were a mix of wonderful shared experiences with her and a plethora of cooking, housekeeping, laundry, financial duties, bathing, managing medicines, monitoring blood pressure and countless trips to rehab, doctors, pharmacy, radiation, church, meetings and visits with friends and family.

I drove my mother to all the meetings and events in which she'd been active before her hip fracture, and merely through this I became involved with AARP and its advocacy efforts at the Arkansas State Capitol, the Silver Haired Legislative Session and Arkansas Area Agency on Aging activities. It was important to keep Mother's life as normal and full as possible as long as I could.

My siblings offered some respite, but the bulk of caregiving fell to me. Fortunately, Mother was an appreciative person with a great sense of humor and she seldom complained.

During this time, gardening and growing flowers became my therapy, and I often found stress relief "in the dirt." Men from our church had built a handicap ramp under the carport and we could no longer park the car there, so, instead, I filled the area with containers of flowers, plants and hummingbird feeders, and furnished it with a table, bench and chairs. Mother and I laughingly and lovingly referred to the area as our "veranda" and often sat in the shade there, enjoying the beauty and the birds as we sipped a glass of wine.

Mother's health deteriorated as time went on, and eventually it became necessary to use a portable wheelchair whenever we left the house. That little piece of equipment was a Godsend because it was lightweight and could fold easily to take in and out of the car when we traveled.

In December 2011, the nephrologist said Mother was in kidney failure and should consider dialysis. She declined to do so. The doctor replied that we should consider hospice.

By the end of February 2012, Mother was in hospice and a hospital bed and oxygen were set up in the den of the home she loved. From the bed, she could look out the window and view her beloved home place.

Ultimately, Mother slipped into a coma for several days until her death on March 26, 2012.

As I reflect on this experience, I realize I could not have given a better gift to my mother than to enable her to live in her home throughout her illness and to die in her home with dignity and the comfort of familiar surroundings.

My parents had long term care insurance, but because I wasn't a certified nurse, the insurance wouldn't pay for the care I gave Mother. Our country's health care system has few provisions to financially compensate family caregivers for their devotion, dedication and care which extends the quality of life for loved ones in their own homes.

Our elected officials should consider improved resources, protections and training for caregivers and establish some means to pay family members for serving as caregivers. The quality of life family caregivers provide for loved ones is invaluable, and much less costly than institutional care in hospitals and nursing homes.

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