The Tribune Democrat, Johnstown, PA

Zachary Hubbard

February 5, 2012

Zachary Hubbard | A letter from ‘Shadowland’

— My mother Phyllis divorced my hard-drinking, truck-driving father when I was 6. She subsequently took a tough job as a nurse’s aide to earn a living for us. During the early years following the divorce, we were poor. Mom somehow always managed to provide food, clothing and a roof over our heads, but we had little else.

Over the years she worked hard and took night courses at the University of Louisville, eventually becoming a medical technologist and securing better jobs. During her long career, she ran a blood bank and histology, tuberculosis and bacteriology labs. She worked at Veterans Administration hospitals for years.

My mother passed away nearly four years ago, just before her 77th birthday. Well before her death, though, Mom’s mind had slowly slipped into a realm I describe as “Shadowland.”

Nothing could have prepared me for Mom’s rapid descent into the world of dementia, a dark state that beset her with hallucinations, confusion and utter terror – she often imagined that snakes were covering the floor of her room.

For years, Mom displayed some early symptoms of dementia, but they were never clear enough to make us suspect that something was going terribly wrong. It was only after she was properly diagnosed with Lewy body dementia that all of the pieces of the puzzle began to fall into place.

Lewy bodies are abnormal protein molecules that disrupt normal brain functions and produce symptoms mimicking Alzheimer’s and Parkinson’s diseases. However, Lewy body dementia progresses at a much faster pace than either of these diseases, sometimes taking just months instead of years.

The first sign that something wasn’t right was when Mom began to have speech difficulties. It was a matter of not being able to find certain nouns when constructing a sentence.

She could explain herself clearly, but the words just wouldn’t come. The phone might be “that thing you call people on” or her bedroom might be “the place where I sleep.”

When she was evaluated for these symptoms, the neurologist said Mom had suffered a mild stroke and would probably fully recover. She didn’t.

I used to work near Mom’s house in Hampton, Va., and would visit her for lunch once a week. During one visit, shortly after my stepfather had passed away, I rang her doorbell, but there was no answer. So I banged on the door.

Nothing!

She was a little hard of hearing, so I banged some more.

After a few minutes, I decided to enter the house with the key I kept for emergencies. This activated the home alarm system, which I deactivated after entering. I found Mom cowering in a closet, holding a loaded pistol. She couldn’t explain what had caused her to panic when the doorbell rang. I subsequently took the pistol from her house.

Another time, my wife and I took Mom with us to a church bazaar. The place was packed, and she became separated from us for a short time. When I found her, Mom exploded – screaming, crying and accusing me of trying to leave her there.

A couple years later, we brought her to live in Johnstown, where she resided in an assisted-living facility for more than a year before being diagnosed with dementia.

Mom slowly began acting out and causing problems. At first it was simple things, such as taking food from someone else’s plate in the dining room. As the dementia progressed, she became more unruly. Once she even slapped the facility administrator.

Mom ultimately became unmanageable and, after she had several emergency stays in the psychiatric ward of a local hospital, we placed her in the dementia unit of a skilled-nursing facility near Indiana. While there, her dementia was correctly diagnosed by a geriatric psychiatrist from the Indiana Regional Medical Center.

Sorting through Mom’s personal belongings after she entered the home was quite traumatic. It was as if she had already died. Even though I understood that my wife and I could no longer provide for Mom’s needs, I felt guilty about placing her in the home. While helping me, my wife discovered a letter Mom had written to herself shortly after placing her own mother in a nursing home.

After my maternal grandmother Myrtle suffered a severe stroke, Mom cared for her at home, by herself, for more than a year. It was incredibly difficult, as Myrtle had lost the ability to speak, was incontinent and was bedridden.

Mom’s letter attempted to explain the emotions she experienced when she could no longer endure the situation and decided to place her mother in a nursing home – feelings similar to the guilt and frustration that were troubling me.

My mother, Phyllis Bennett (her remarried surname), entered the Indiana facility in March 2008. Her physical and mental conditions deteriorated rapidly. She died in May of that year. It’s still painful for me to think about her difficult, painful final months of life.

Fortunately, I’ve managed to find comfort in my mother’s words, knowing how she agonized over her mother’s demise and having the assurance that Mom would have understood how I felt and what I did. Her letter from “Shadowland” was an unexpected gift for which I will always be thankful.

According to the Alzheimer’s Association, in 2010, 14.9 million family and friends provided 17 billion hours of unpaid care to those with Alzheimer’s and other dementias. Those who care for the elderly should learn to recognize the signs of dementia. Comprehensive information is available on the website of the National Institute of Neurological Disorders and Stroke, www.ninds.nih.gov.

Zachary Hubbard is a retired Army officer and a freelance writer residing in Upper Yoder Township. He is a member of the Tribune-Democrat Reader Advisory Committee.

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