The difficulty dealing with dementia

Dementia, whether formally diagnosed as Alzheimer’s disease, vascular dementia or some other cause, is a scourge of a disease. It is insidious and progressive and robs a person of their so-called “golden” years or the twilight of their life.

There is something magical and inherently healing about the heat and light of fire in a wood stove. Our wood stove was located in the basement of our house on the outskirts of our small town. During the cold and harsh winter months our stove would be lit, burning wood and warming our house.

The fire would burn all night and supply all our heating needs. The last ember would burn out by the early morning.

My mother, Marion, was generally a kind soul with a loving heart. She was a traditional homemaker, who grew her own garden and made wonderful and nourishing meals from scratch. She canned her own food and made her own bread. She also knitted and crocheted sweaters, socks and blankets. She had her share of tragedy and loss in life. She turned to the Bible for solace. Her favorite book in the Bible was the poetic Book of Psalms.

At the beginning there were subtle signs. She would often forget places and names. She would get dates, times and numbers confused. She misplaced things and couldn’t remember where she left them.

She would brush off these momentary lapses and make whimsical excuses. She would then accuse her husband of not listening to her and following instructions. After he suddenly passed away, her symptoms worsened.

Stories became more convoluted, a mix of reality and memories of the past. One moment she would talk coherently but then drift off into something that bordered on fantasy. Her short-term memory faded but she could still remember vivid details of her distant childhood. She was diagnosed with vascular dementia.

As her memory deteriorated, she was placed in a bright and beautiful, but somewhat sterile, care home with other similar infirmed and decrepit individuals. She seemed to adjust to her new living arrangements nicely. As she grew older, she became frail and weaker, lost her appetite and her ability to walk unaided.

I am going to miss our telephone calls. I could phone my mom anywhere or anytime and talk to her and ask her advice. When I moved away to college and university, I could phone when I was down or despondent and say “Hi Mom…”

When I graduated and went to school in Seattle, I could always phone home and have her answer. After I got married and lived in a different city than my parents, I could still phone home and talk to mom.

As her illness progressed, the phone calls dwindled. She would often have trouble hearing me, would get me confused with someone else or inadvertently hang up on me. She talked about the incidences that happened long ago to people who have long since passed. And then the phone calls stopped.

Spouses, children and caregivers of patients suffering from dementia and other neuro-degenerative diseases are exposed to a variety of stressors. They experience a range of emotions ranging from confusion, grief, fear, sadness, anxiety, depression, embarrassment, loss, rejection and guilt. More than anything, I felt a certain amount of guilt and powerlessness to do anything.

During the COVID-19 pandemic, the care home was under strict lockdown for months. I only had a few brief visits outside her window. My last visit was just after Christmas when I was able to visit her in person.

She was confined to her medical bed. We talked about things that were both real and imaginary, punctuated by brief smiles and laughter. I held her hand, told her I loved her, gave her a kiss on her forehead and that was the last time I saw her.

Unconditional love is loosely defined as a love or deep concern for another without any attachments or boundaries. A true mother’s love of a child is epitomized as an unconditional love. I am forever grateful for friendship, guidance and the love she gave and showed me.

Many studies show children shown unconditional love are better adapted, healthier and have superior stress resolve. It is critical for the personal development of self-esteem. Children not shown unconditional love tend to show more helplessness, anger and resentment.

Like the last ember of a fire in wood stove, my mother faded away. But her example of unconditional love has endured and persisted.

This article is written by or on behalf of an outsourced columnist and does not necessarily reflect the views of Castanet.