By Shira Sebban
Alzheimer's Reading Room
But this time we could sense that something was wrong. My father wasn’t feeling well and my mother, who over the past few months, had cancelled several appointments with the geriatrician, did not seem herself.
Recently returned from a cruise, my father reported: “People didn’t want to sit with us because your mother kept repeating the same stories.”
Within a few months, the family had received two diagnoses: my father was suffering from cancer, while my mother was in the early stages of Alzheimer’s disease.
My sister and I, together with my infant son, flew down for the requisite family conference, where our father joined us, interrupting his radiotherapy treatment for the occasion.
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After his death only a few months later, I did not want to leave my mother alone in her downtown apartment and convinced her to fly home with me. She moved in with my young family for a few months, before she expressed the desire to have her own apartment.
A fiercely independent, retired academic, she enjoyed her own company and while she took pleasure in her grandchildren, she also craved the privacy and space she had always needed to read, think and write.
During our weekly Friday evening family gatherings, our children would sing a song in which each family member had to state what they love. My mother’s answer never changed: peace and quiet.
In finding our mother a new home, we took great pains to ensure that it would have as an attractive an outlook as possible and be furnished with all her cherished possessions. Sadly, we knew that her apartment could eventually become a golden cage, where she would by necessity end up spending much of her time.
A decade later, almost completely incapacitated and confined to a wheelchair, she does not take notice of the beautiful views and mementos anymore.
I do not even know if she recognizes me.
Nevertheless, we take comfort from the fact that she still leads a daily existence in which her care and well being are paramount. And while the variety of outings has indeed diminished, she still travels to parks and gardens, attends an adult day care program twice a week and visits with her family.
Asking my mother to move cities was fraught with emotion and difficulties. After all, I was asking her to leave her hometown and her friends. Still, I felt driven to act quickly and decisively, only too aware of the narrow window of opportunity available before her illness would grow worse, and wanting to take advantage of the time during which she would still be able to cope with the stresses and upheaval involved in such a major move.
When she first moved in with me, I naively thought I could help her meet new friends.
A spirited, courageous and knowledgeable woman, my mother had always been great company, able to converse with young and old alike. I made several arrangements for her with my friends’ parents, only to discover that after the initial introduction, they did not wish to pursue the connection.
They did not share a common history, did not have the patience to listen to her repeat stories from her past, and were not prepared to cope with her confusion.
Eventually, we turned to a home care agency for extra companionship and subsequently, as the Alzheimer’s progressed, for the professional care needed to enable her to continue residing with dignity in her own home.
While we were fortunate to have had that option and my mother was generally accepting of these kind strangers, I still remember being wracked with guilt, when she would suddenly change her mind and beg to go “home” with me rather than stay in her until-then cherished apartment.
Meanwhile, her true friends were living far away. Initially, they rang regularly, wrote cards and letters, and made arrangements to visit when they happened to be in town. But as the years passed and my mother could no longer answer the phone or reply to a letter, her world narrowed even more.
Friends stopped writing or visiting, and I found myself reminding her former colleagues to send the occasional card. After all, it is hard to keep up a relationship when it seems so one-sided.
Eventually, I discovered that I had, by default, become my mother’s spokesperson.
Her friends would ring or email me for news of her, while charities that she had long sponsored would ask for donations, which I would dutifully provide, striving to act as I thought she would have done.
For many years, I continued her subscriptions to various publications until I finally came to the sad realization that unless I or another family member was going to read them, there was just no point in doing so anymore.
After years of struggle, I have come to accept that my mother’s place in the world is no longer what it once was. In the flurry of everyday life, I cannot expect others to have the same depth of emotion and concern about her as I do, nor can I control their behaviour.
Gradually much of the world forgets the Alzheimer’s sufferer. It is almost as if people are too embarrassed and don’t know how to relate to someone who may only be able to respond, if you are lucky, with an occasional smile, look or touch.
Yet, it is also human nature to want to be respected and remembered, along with those we love and admire. As the 19th century American poet, Henry Wadsworth Longfellow, wrote in A Psalm of Life:
I do not want my mother’s footprints, which she worked so hard to create, to be erased, and so I constantly recall the person she once was – my role model and best friend, a brilliant scholar, loving parent and grandparent.
I also ensure that my children know our family stories, for sadly, they are too young to remember much about their grandfather and only know their grandmother as she is now.
At the same time, we are all familiar with the Golden Rule to treat others as we would like to be treated ourselves.
My mother may no longer recognize me, but she still appreciates good food, music, massage and the warmth of the sun. And so I strive to reach her by cooking for her; buying her favourite dark chocolates; giving her an ipod filled with familiar tunes to soothe her when she is agitated or cannot sleep; arranging physiotherapy massages and outings to parks and gardens.
I do for her what I can within my power, striving to ease the anxiety, confusion, loneliness and rejection. It is the least I can do – she is my mother and I, for one, will never forget.
Shira Sebban is a writer and editor. A former journalist, Shira previously taught French and worked in publishing. She is also vice-president of the Board of her children’s school.
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