Living With Dementia: A Loving Daughter’s Story

This is my story of my mother’s dementia. My mother, Joyce, was an energetic and creative person living a busy and fulfilling life. She visited the elderly, made costumes for all of my stage productions, was a skillful baker and an exceptional cake decorator. She enjoyed gardening, reading and crosswords. She and my father, Peter, had been happily married for over 40 years.

This soon started to change

Around the time that Dad retired, she started to behave oddly: phoning me up to five times a day, telling me the same stories and asking the same questions. When I got irritated, she would make light of it, joking about age creeping up on her. More was going on, as we later discovered, and this is the hidden part of the illness. She often misplaced things, found it difficult to focus and complete simple daily tasks. She hid it so well from everyone. Then she began to lose interest in activities that once brought her pleasure, becoming moody, anxious and suspicious. Her GP was dismissive and uncooperative. Mom was only 62 and it took its toll on her daily life. I knew that it may be something like a dementia, but took the brunt of the anger, fear and suspicion for even suggesting this. And it didn’t help that Mom refused to get checked for a more informed opinion. Dad was adamant that there was nothing wrong, and fiercely protected her. The arguments come to a full stop after a brain scan was taken to check for trauma, after Mom tripped and banged her head on the bath taps. Despite our concern, nothing prepared us for the report and the ensuing visit to a neurologist: she had “a dementia typical with that of the Alzheimer type”.

Part of me felt relieved, as we know knew what we were dealing with, but the feelings were overwhelming – a jumble of rage to guilt.

Timing is never easy, or perfect. Coping day-to-day became too much for Dad and they moved nearer to us for help. Our daughter, Hella, was 20 months old, and I was pregnant with our son, Rael. While in hospital shortly after his birth, Mom phoned just before the evening TV news, as she wanted to change to the channel. She couldn’t understand why the remote didn’t work. In the background I could hear the beeping of a cellphone being pressed. I explained the mistake, but the beeping continued. The more I explained, the more anxious she got. I lost it, shouting at her. On hearing the commotion, my gynaecologist carefully opened my door, sat at the foot of my bed and listened. In that moment, I realized that this disease is greater and more powerful than we will ever know – and it can’t be cured with kindness. I am grateful that he connected us with a psycho-geriatrician (a psychiatrist specializing in geriatrics) who was enrolling patients living with dementia for a clinical trial. This allowed us to access professional help and support for her, and for us. I was determined to learn as much as I could, while experiencing the disease in real life. I attended as many international conferences on Alzheimer’s disease as I could find. I came home armed with brochures, notes and videos.

“Dad was trapped between denial, anger and grief, and I initiated THE conversation.”

My part went like this: “Dad, you always told me that life was about choices and consequences. We have a choice now regarding Mom’s condition. We can either ignore what’s going on, or we can become more involved in trying to manage and understand this situation better.” Challenges either make you bitter or better. Better was always our choice. My role changed – Dad and I became confidants. He relied on me for the support that Mom had given him. We shared the load of caring, and retrained Amelia, our housekeeper, to help Mom with bathing, dressing, daily walks and some simple activities that she enjoyed. Dad took on the extra responsibility of managing their home. And then there was the emotional work: acknowledging our fears, anger, guilt, hopelessness and our deep sense of loss… slowly moving on a constantly changing journey.

How we took on the challenge of dementia

Caring for Mom was a rollercoaster of emotional, physical and personal challenges, all of which affected us in different ways. Although never aggressive, she suffered severe anxiety and paranoia. Increasingly, her nights were filled with hallucinations and scenes from her childhood on the farm. Then there were the humorous times that were so innocent. She became adept at placing orders from “knock- and-drop” pamphlets that local suppliers put in our postbox, once ordering a bakkie-load of vegetables. Lighter moments included her believing she knew most of the Cape Town bergies, and she would wave to them from the car like long-lost friends. She also told us that Madiba had phoned to ask her to take care of some AIDS orphans. She was convinced that my friend’s redheaded son was Shaun Pollock, and while watching cricket on TV, she always brought in a tea tray for all the cricketers!

“The wounds of this insidious disease – dementia – have become my gift.”

There were scary times too. One morning she wandered off at a shopping mall, but thankfully a laminated card in her handbag with our contact details, and a caring lady who noticed her confusion, brought her back unharmed. The faces of people in magazines and on TV had become Mom’s new circle of friends, with whom she enjoyed long and animated conversations. However, talking to us was distant and difficult. Increasingly she showed resistance to social gatherings and disliked noise. Slowly we faded from her world. It was so hard, experiencing a living loss. We explored new ways of interacting with her, and the participation of my children was interesting and wonderful.

She loved playing play dough with them, cutting out pictures in magazines, sticking them into a scrapbook, water play with  bubbles, and playing with Hella’s dolls. We never treated her like a child, but she was comfortable with activities involving my children. Together they made her a memory box packed with family photos, icing tubes and a swimming costume from her youth. She loved musicals, especially The Sound of Music, and loved dancing and singing to remembered tunes. And even though she constantly hid pieces of the memory box, it gave her enormous comfort.In 2001, after attending another international conference, my homecoming was profoundly sad. During my few weeks away, Mom had become incontinent. Dad wasn’t in good health either and we had to face the reality that it was becoming more difficult caring for her at home, as she needed more hands-on care and help with most activities. We looked at a number of options, including home carers. Finally, after much discussion, considering various scenarios, Mom’s best interests, my young family and Dad’s failing health, we realized it would be diffcult to manage and co-ordinate home care.

13 November 2001 is forever etched in my memory as the day Mom left home.

The guilt, the feeling that we were abandoning her…. all that pain is still there. My father, my friend Susan and I, took Mom to her new home. To her, it may have seemed as if she had moved into a residential hotel with lots of friends and smiling faces, but she adjusted well. The Joyce we knew didn’t know us anymore. However, we made sure that the care staff knew who she was – her life history, her talents, her preferences in food, her siblings and activities she enjoyed. It brought meaning and purpose to her days, as did our visits and those from her siblings. It was as though there was a little spark of recognition, either a voice, a whiff of her favorite White Linen perfume, a loving massage of her hands, brushing her hair, a touch…. Something, even if only for a fleeting moment. However, Mom never understood that Dad died in 2002, shortly after being diagnosed with pancreatic cancer.

The ravages of the disease continued, and peacefully, on 13 April 2011, Mom slipped away – 21 years after her diagnosis. The wounds of this insidious disease have become my gift. DementiaSA was formed with a vision of a South Africa where dementia is recognized and acknowledged in a person-centered way, giving respect and dignity for all. We will continue in the memory of many others who experience or have experienced the journey of this invisible disability, and for me, the indelible memories of an incredible mother, Constance Joyce Meyer, and precious father, Peter Meyer. Want to find out how you can eat to prevent dementia? Click on the following link to discover the brain foods that will take care of yours.

Click here to find out the link between alcohol abuse and dementia.

By Karen Borochowitz