Caring for my Mother: Burden or Responsibility?

The idea: Shira reflects on the challenges and rewards of caring for her mother, who has dementia and still lives in her own home.

My name is Shira Sebban. I am a writer and editor based in Sydney, Australia, whose mother has advanced Alzheimer's disease. A former journalist, I previously taught French and worked in publishing. I am also vice-president of the Board of my children’s school.

I am my mother’s advocate. Together with my sister, I manage her household, supervise her carers, pay her bills, run her errands. Most importantly, we champion her rights, providing her with a voice at a time when tragically, she can no longer stand up for herself due to the decade-long ravages of Alzheimer’s disease.

My mother used to be my role model and my best friend. Passionate, strong, courageous and intelligent, she was a brilliant scholar and a loving parent and grandparent, the person I could turn to for advice and companionship at any time. Now the tables have been completely turned. The child who started out entirely dependent on her mother has matured to become the one on whom her mother depends.

Since my mother has been afflicted by illness, I constantly feel her absence like a gaping hole in my life. She may still look like my mother and remain physically near, but mentally and spiritually, she is no longer there for me. When someone has Alzheimer’s, there is plenty of time to say goodbye. Deterioration occurs slowly, with changes almost imperceptible at first and then becoming only gradually more noticeable. Alzheimer’s is a cruel illness as my late maternal grandfather noted, telling my mother when sadly, he was in the throes of the disease himself, “I am losing my I”, by which he meant that he was losing what made him whom he was as a person.

Moreover, gradually much of the world forgets its sufferers. Many friends stop writing or visiting; it is almost as if people are too embarrassed and don’t know how to deal with someone who can no longer respond except with a smile, a look or a touch.

Long ago we promised our mother that we would never put her in a nursing home. And we have honoured that promise, convincing her early on to move to the same city where we live and striving to ensure that she continues to reside with dignity in her own home. As card-carrying members of the “sandwich generation”, we have chosen to juggle her needs along with those of our own young families. While that may not be the right decision for everyone, it has certainly proven to be the correct option for us, and we are fortunate to have had the freedom to be able to make that choice. While our mother can no longer thank us, I know that she is grateful. Before she lost the ability to speak, she was expressing her gratitude to everybody who helped her, and I’m sure she would still be doing so today if she could.

Broadcaster Sandra Tsing Loh said earlier this year on National Public Radio’s Talk of the Nation that the “daughter track is far more open-ended [than the mommy track] and has no rewards at the end except for death” (29 February, 2012). No rewards? Even though I’d give anything to have my mother back again as she once was, I know that caring for her has taught me to be kinder and more patient. It has also given me an opportunity to set a good example for my children, teaching them to be decent human beings. As my 11-year-old son said, “We owe it to our parents to look after them in their old age. They care for us when we’re young and then it becomes our turn to care for them.” Moreover, I feel rewarded that I’m providing my mother with a good quality of life from which she still derives some enjoyment.

Yes, despite everything, she still gets some joy out of life. Contrary to popular misconception, advanced Alzheimer’s sufferers are not vegetables. Although the illness may cocoon them from feeling the full brunt of life’s emotions, they still experience pain and pleasure, peace and agitation. My mother continues to appreciate good food, especially dark chocolate, music, flowers, massage and the warmth of the sun. She may be confined to a wheelchair, but she is not confined to her apartment, attending an adult day care program twice a week, going on outings and visiting with her family. She is still a human being – even if she has lost her “I”.

Published on 27 November 2012
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So beautifully put and I wish we could all keep our loved ones beside us. Sometimes though, as in my case, it was not possible to cope, there is still a void in my heart despite spending all my time with her.

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