Alzheimer’s and Adele

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Adele in her late 70s

My mother died recently.

It was to be expected, I suppose, at her age of 91 and because of the fact that she’d been sick with Alzheimer’s for more than a decade. Knowing all of this, her death still came as a knockout of a shock to me. I’d been fooling myself for years that I was prepared for the end… I was not.

At the time that she was diagnosed with Alzheimer’s, the doctor told us that the disease starts long before the symptoms show. My best guess is that it began about 19 years ago, after she was in a terrible car accident – she was never the same after that.

She lived with me and my family – my husband and two girls, for most of those 19 years – except for the last four years that she spent in a nursing home, in a locked ward.

My family watched her lose herself and tried to keep things normal for as long as possible. It was frustrating that neighbors and distant friends and relatives, didn’t see the changes that we did. Frustrating that no one, except the Public Health Nurses who came and went, understood the toll it took on us. It is an unforgiving and terrible disease, and leaves the person you have loved all your life, unrecognizable. Through each agonizing stage of its progression, there are no clear guidelines, because every patient is different.

There are major milestones of the condition, however, that are relatively the same across the board. It was about a year ago that her doctor took me aside, and explained to me that my mother was in the end stage of the disease. She didn’t think that my mother would live out the year – the clearest indicator of the end, she told me, was when the patient stopped swallowing. I wasn’t surprised to hear this back then. I had clearly seen her decline become precipitous in the previous few months. Then, when she was put into a Broda chair and was no longer walking, it was obvious that she was not just mentally failing, but physically failing as well.

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Adele: young and happy in the 1950s

Just two days before she died, we got a phone call that she was pocketing her food. In my ignorance, I thought she was literally putting her food in her pocket, which she had done on many occasions before. My mother was very smart, even with Alzheimer’s, and was frequently getting away with things like that – like when she managed to figure out how to unlock her seat belt on her wheel chair and suddenly stand up – a real danger to herself and to others, believe it or not.

But no. Pocketing food means that the patient can no longer swallow and the food accumulates in the cheeks of the mouth. It was the signal that she was near the end, and I didn’t realize it til too late.

There are many books on the subject, but I don’t want to read any of them. I have lived it in all its unpleasant and hurtful details. Nor do I want to watch dramatic films about it – perhaps they help to edify people, but I can’t think of anything I’d rather forget.

And that is the challenge – to forget all those years of decline and loss, and remember the whole and complete person, who is gone.

The doctor at the nursing home is a wonderful, caring person; the kind of doctor you want especially for the elderly who are sick with dementia. To comfort me, she told me that she’d seen many people lose themselves to the disease, and from this personal experience, she knew that we are more than what we say or do. What is left after the ravages of Alzheimer’s, is the core of the person in the purest form. She told me that even though my mother had lost all her ability to remember or speak or put a thought together, she still was a warm and loving person inside.

In the end there was little left of her – even her radiant core had gone out. She was rail thin, and slept almost continually. It was a relief for her to go, I am sure.

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Adele and her second baby c 1961

She wasn’t afraid to die. She had talked to me many times about it over the years. She had had a near death experience when she lost her third baby in childbirth in the early 1960s. She saw a beautiful light at the end of a long dark tunnel and went towards it and felt eternal peace. She told me that it was so beautiful that she didn’t want to come back, but she suddenly remembered her two little girls, and had to return. That experience stayed with her her whole life.

If you believe in heaven or an afterlife, you can say she is now with her baby and her husband, her sisters, and her parents, and all of her ancestors, somewhere up there. It’s a nice thought. But I am more comforted to know that she lived a full and adventurous, brave and creative life – never wasting a moment of it for as long as she could.

Even as she lost herself to the disease, she still got up every morning and smiled at the sun.

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Happy Birthday Adele

On this day January 18th, in 1926, my mother Adele was born.

Baby Adele with her sisters Joanne (L) and Barbara

Baby Adele with her sisters Joanne (L) and Barbara 1926

She is now 88 years old.

Like her entire generation, my mother Adele lived through the depression, WWII (she made airplane parts in a factory during the war) – the Korean War – the Vietnam War – the Gulf War – the War in Iraq and Afghanistan and every other horrible violent human endeavor perpetrated through most of the 20th century and the first years of the 21st.

She witnessed the discovery of vaccines and antibiotics and the development and use of rockets and nuclear bombs and nuclear power plants. She had one of the first television sets. She saw the first satellite go round the earth and watched the space program and space exploration unfold. She watched all the Star Trek TV shows and movies – but loved the first series best. She watched the development and ubiquitous growth of computers and eventually got one in her 70s.

Adele (L) and her little sister Coline c1937

Adele (L) and her little sister Coline c1937

And don’t forget all the social changes – the fight for women’s rights and the advancement of civil rights – watched the population explosion, the use of genetically modified crops, the move of populations to cities, the building of high rises and sky scrapers, hippies – disco – punk … and on and on.

And through all of this she remained curious and excited by new ideas and new opportunities to learn. Anything and everything she wanted to know about – so she read continuously and watched documentaries and news shows, took classes and joined clubs, and she even took a couple of the Great Courses in her 80’s.

All of this would be enough to fill one life but she did more. She was an artist first and loved to paint in oils – she painted more than a hundred portraits of children alone.

Adele and Hightop

Adele age 18 and Hightop

She was creative beyond painting and art too – she made all of our family’s clothes using Vogue patterns and most often the designer line which can be very challenging in terms of tailoring and sewing technique. She hand pieced quilts and for a time was president of the Jolicure quilting club. She reupholstered furniture and one time not only made a new slipcover for a big old armchair but embroidered the whole thing with sunflowers. She did other needlework too – including designing and producing needlepoint kits with her sister Joanne (also an accomplished needleworker) and made beautiful and elaborately smocked dresses for her children and grandchildren. And as I wrote about earlier – she hand made books with calligraphy and linoleum cuts and used beautiful silks and Japanese papers to bind them.

Adele Safran c 1964

Adele, my beautiful mother, in one of her couturier suits c 1964

When I was little during the 1960s she taught me all about the stars and planets and we would go out at night in our little suburban backyard and gaze at the little patch of visible sky and see all we needed to see.

When the Apollo mission went to the moon I joined the NASA space club and she and I read everything together and made a beautiful scale model of the lunar lander and of course watched all the TV broadcasts of the mission together. And when we moved to the country in Canada, the sky was enormous and we were able to see the Andromeda Galaxy, and star clusters and planets and the northern lights…

The Black Pony by Adele Safran, oil on masonite

The Black Pony by Adele Safran (oil on masonite).
My mother won the blue ribbon for this work at the Calgary Stampede.

She was a great cook, and learned how to decorate cakes with frosting roses and flowers. She ground her own flour and baked her own bread – never ate store bought till she was too old to do it herself about 2 years ago. She grew and pickled and froze and preserved her vegetables (did I say she was also a gardener?). She made her own wine from raisins and bananas. And if anything needed fixing – well you just fixed it – no need to replace it.

She taught me to explore the natural world and learn about it and to love animals and plants and trees and to be free of fear but respectful of all of them.

So in short – after this long blurb, I guess I just want to say that she gave me a wonderful gift – her curiosity of the world and her fearless joy of living every day in it. And for that I am eternally grateful.

Adele Safran with her sisters Coline (center) and Joanne c 1988

Adele with her sisters Coline (center) and Joanne c 1988 in the backyard of the Red Farmhouse in Jolicure, NB, Canada

 

Please Note: Adele is now ill with advanced Alzheimer’s – this is a tribute to the woman I remember and love.

I will be writing in more detail about her remarkable life in upcoming posts.