Posts Tagged ‘Caregivers’ Stories’

Common Sense Caregiving by Gary Joseph LeBlanc: A must read for anyone caring for a loved one with Alzheimer’s

A columnist and book dealer from Spring Hill Florida Gary Joseph LeBlanc offers a personal and down to earth account of his experience caring for his father who suffered from Alzheimer’s disease. This common sense account of is a must read for anyone caring for a loved one with Alzheimer’s disease.  Written as a completion of sixty-five articles from his column, LeBlanc gives an encouraging and enlightening guide for anyone navigating the turbulent waters of caring for a loved one with Alzheimer’s disease.

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Moving Mom to a Safe Place

By Mary Jo Garinger

My mom had been diagnosed with Alzheimer’s Disease seven years before my stepfather passed away suddenly. She had already been started on Aricept, a drug used to help alleviate some confusion in those with Alzheimer’s, but I hadn’t fully grasped the severity of her dementia and how much my step-father had cared – and covered up – for her until his passing five years ago.

As we stood at the hospital, Mom had no idea why she was there or what had happened to her husband, although I had told her repeatedly. The doctor would ask her questions and she would turn to me for the answers. She repeatedly asked me, just seconds apart, “Why are we here?” and “What’s a seizure?” when I told her how her husband had died.

My first task in taking charge of her care was to get a baseline on her medical condition, so I took her to her neurologist. She reconfirmed the Alzheimer’s diagnosis and suggested that I take her to a geriatric institute where she would receive the appropriate medical and psychological care. After she was evaluated by a full panel of medical experts, I received a written prescription stating my mother needed “24 hour assistance with medications, cooking meals, eating on a regular basis, daily hygiene, and observation for falls.” I was encouraged to seek Power of Attorney (POA) and move her to a safe environment. Convinced I was doing the right thing, I obtained the necessary medical signatures and paperwork so I could legally make medical and financial decisions for her.

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I Married an Illness

By Terri Corcoran

I married Vince in April 1999. It was a second marriage for us both – I was 48 and he was 64. We weren’t exactly in the robust years of our youth, but we were both healthy, or so I thought. A month after our wedding, Vince fell down while playing golf. At the time, no reason could be found for the fall. He would have more occasional, unexplained falls as time went on, and would develop apathy and lethargy that led me to doubt that he really cared about me.

For the first five years of our marriage, we went to five neurologists. We finally, in 2004, got the diagnosis of Fragile X Tremor Ataxia Syndrome (FXTAS), a genetic neurodegenerative condition which was not even identified by medical research until 2001. I was thrilled to have a diagnosis, but my caregiving had already become a full-time job. Vince was no longer able to walk without help, as he had no balance and not much coordination. He was incontinent (bowels and bladder), and I had to make the acquaintance of adult diapers. Worst of all, his brilliant mind (he had been a laser scientist with a Ph.D.) was becoming severely impaired as the messenger RNA in his brain cells became toxic.

Because Vince’s mind did not work, I could not safely leave him alone at all, so I had to leave my job to be with him 24/7. My new “lifestyle” consisted of taking care of all of Vince’s personal needs, developing a care plan since doctors did not know enough about this new syndrome to offer much advice other than “it will keep getting worse,” making sense of his financial affairs – which was a pile of nightmares resulting from years (even before our marriage, which I did not realize) of his mind slowly losing its executive abilities. I also had to practically reconstruct his horror of a house, which I had moved into with his promise that we would fix it up, but he couldn’t get his mind or body together to do anything. In addition to the never-ending home repairs, I had to add a wheelchair ramp, stair lifts and a handicapped bathroom. Instead of buying new furniture to replace his stuff from the 1950’s (yes, really – the ‘50’s!), I bought an assortment of canes and walkers, a transport chair, an easy-lift recliner, and whatever else I could find to make life any easier.

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