Please Don’t Forget

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.

By Shira Sebban
Alzheimer’s Reading Room
I had just given birth to my third child. As always, my ever-supportive parents had flown up from their hometown to welcome the arrival of their latest grandchild.

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.

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:

“Lives of great men all remind us
We can make our lives sublime,
And, departing, leave behind us
Footprints on the sands of time”

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.


Caring for My Mother: Burden or Responsibility?

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.

By Shira Sebban
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”.
Shira Sebban is a writer and editor. A former journalist, Shira previously taught French and worked in publishing. She is also a director on the Board of her children’s school.

Making the Most of Life

JULY 9, 2012 · 8:17 AM

by Shira Sebban (Sydney, Australia)

Like most of us, I usually try to avoid thinking about death. Its seeming finality – the enormity of the thought that we are never coming back – is not something I have ever managed to face and comprehend fully no matter how hard I try. Instead, heart thumping, courage faltering, I usually come to a screeching halt just before plunging over what seems like the looming precipice beyond.

Yet, on the ninth anniversary of my beloved father’s passing and just a few days after attending the funeral of my dear friend Shimon, I find myself drawn to musing about death and to be able to do so more calmly and rationally than ever before.

Selfless and discreet, Shimon was a caring man, a listener, who preferred not to speak about his own trials and tribulations and devoted much of his life to helping others through his nursing work and later as the hospital chaplain for our synagogue. Listening to the rabbi’s eulogy for Shimon, I felt uplifted and a sense of inner peace soothed my soul – just as my friend would have wanted.

I do not normally derive comfort from a Jewish funeral service. Nor are you meant to. The tearing of relatives’ clothing over their hearts to symbolize their pain, recital of prayers – “You return us to dust… the best of … years have trouble and sorrow; they pass by speedily, and we are in darkness” (Psalm 90) — and the harsh thud of earth shoveled onto the coffin, all serve as a wake-up call to those who grieve.

In addition to honouring the deceased, mourners are required to confront the reality that not only have they lost their loved one, but that their own lives are finite: “Teach us to number our days that we may attain a heart of wisdom.” (Psalm 90) Indeed, this is the source of the Jewish tradition of wishing mourners “a long life” – not because we would be so heartless, as I once thought, as to desire that they live for a long time without their loved one but because we hope they will enjoy “long days” from which they will derive meaning and purpose, striving to make the world a better place.

My mother would often quote a passage from the Talmud, which is traditionally recited for a man at a Jewish funeral: “It is not your duty to complete the work, but neither are you free to desist from it.” (Tarfon, Pirke Avot, 2:21)

At Shimon’s funeral, the rabbis recited a beautiful poem, “Life is a Journey,” by the late Rabbi Alvin Fine of San Francisco’s Congregation Emanu-El, which provides a realistic summary of the fallible human condition. Failure certainly does not preclude meaning:

“From defeat to defeat to defeat, until, looking backward or ahead,
We see that victory lies not at some high place along the way,
But in having made the journey, stage by stage, a sacred pilgrimage.” (from Gates of Prayer, published by the CCAR)

Perhaps I have become more aware of death because I have been writing the life stories of my late grandfather and of my mother, who is now sadly in the advanced stages of Alzheimer’s disease. In the course of this journey, I have been fortunate to have been able to trawl through a treasure trove of family letters, some dating back as far as the 1930s – snippets of social history, which regrettably, with the advent of email and the Internet, come to an end around the year 2000. It is sobering to realise that I will not be leaving the same legacy for my children.

Written in English, Hebrew, Yiddish and even occasionally Polish, these letters have crisscrossed the globe. Desperate letters in Yiddish from a sister in Lodz, Poland, in 1935 to her sister, my late grandmother, in Tel Aviv; hundreds of letters in Hebrew, which followed my mother’s journey from Tel Aviv to Melbourne, Australia, in the late 1940s and back again, and then on to London and Montreal a decade later and back to Melbourne once more in the late 60s; and letters in English spanning four decades from my Canadian father’s family in Toronto to their brother in Melbourne and from my adopted Melbourne “aunt” and close family friend to my mother, providing vignettes of what life was like for Australians in the 1950s and 60s.

In perusing these letters, each preserved in its original envelope, what quickly becomes clear is that no matter what advances technology may bring, fundamentally little has changed: human beings still experience joy and suffering, success and failure, complain about the economy, celebrate births and marriages and bemoan divorces and deaths among family and friends. Life continues – whether you are there to witness and experience it or not. As the ancient Book of Kohelet (Ecclesiastes) teaches: “there is nothing new under the sun.” (1.9) “One generation passes away, and another generation comes; And the earth abides for ever.” (1.4)

So much toil and trouble, fuss and bluster, anguish and elation. Yet, after we are gone and our contemporaries have also vanished with the passing years, what remains? For the creative few, a contribution to knowledge they may have made; a book they may have written; artwork they may have produced. For those with means, a legacy in bricks and mortar or a charitable foundation to which they may have contributed. For the vast majority of us, the living legacy of our children, grandchildren, and possibly even great-grandchildren, as well as photos and other memorabilia and perhaps sayings or traditions handed down from generation to generation.

My late father was a quiet man. On the first anniversary of his passing, the rabbi likened him to the Ancient Israelite tribe of his Hebrew namesake Issachar, whom Moses exhorted to rejoice quietly “in your tents”, in contrast to fellow tribe Zebulun, who was to be happy “on your journeys”. (Deuteronomy, 33:18)

In his own discreet way, my father did whatever he could to care for and support his family. He would do anything for the ones he loved and he was everything to us. To him, home and family came first, and I will never forget how on the day he died, he urged me to leave his hospital bedside and return to my husband and young children because “they need you”.

My father stood like a pillar at the centre of our lives. We were all accustomed to depending on him, and when he died, we felt his absence keenly. In the days and months that followed, I could not help but ask myself how it would have bothered anyone if he had been allowed to continue driving through the streets, helping to lighten the load of his family and friends?

At my friend Shimon’s funeral, the rabbis also quoted from Ecclesiastes:

“Kohelet wrote: ‘The eye never has its fill of seeing.’ (1.8) … God, be now with those whose hearts are broken because, whenever parting comes, it comes too soon.”

Unfortunately, such words of comfort were missing from my own father’s funeral and shiva. The rabbi went to great lengths to urge the family not to respond to the embraces of friends at the funeral; he only agreed to attend shiva once at my parents’ city apartment; and when at his request, my mother, sister and I came to the synagogue each evening during shiva to recite Kaddish, we found the main sanctuary cold and dark, with the men comfortably ensconced in the small, cheery annex used during the week. The annex did not have a mechitza (partition to separate men and women), and so the men insisted that we file into the main sanctuary and sit in the row closest to the annex, the windows of which were opened so that we could hear the prayers.

Until my father’s passing, I had been fairly sure that there was nothing after death. Although I keep a traditional Jewish home and had spent years studying philosophy, I could not seem to accept the idea of “eternal life” and “everlasting peace” in the “world to come”. Yet, when I lost my father just a few hours after spending the night tending to his needs in hospital, I began to question my former apparent certainties. How was it possible that my father could be there one minute and gone the next? What had happened to his persona, to the essence of who he had been, to his soul?

Ecclesiastes teaches: “And the dust returns to the earth as it was, but the spirit returns unto God, who gave it.” (12.7) Today, while I am still not sure whether or not I believe in God, I draw comfort from praying that my father’s “soul be bound up in the bond of everlasting life” and I strive to honor his memory through my actions.

As Rabbis Sylvan Kamens and Jack Riemer wrote in their poem, We Remember Them, also recited at Shimon’s funeral:

“As long as we live, they too shall live,
for they are now a part of us,
we remember them.” (From Gates of Prayer)

Shira Sebban, a writer and editor based in Sydney, Australia, worked as a journalist for the Australian Jewish News. She previously taught French at the University of Queensland and worked in publishing. You can read more of her work at:

We Are All Boat People

By Shira Sebban – posted Monday, 21 May 2012

We Australians are a caring lot. We are so worried about asylum-seekers risking their lives on leaky boats that we want to dissuade them from taking the dangerous ocean voyage in the first place.

If they actually make it to Australian waters, the Opposition wants to turn the boats around “when safe”, while the Government’s ideal would be to resurrect the Malaysia deal and send the “queue jumpers” to the back of the line.

Both parties agree that offshore processing should be resurrected as a deterrent to the ever-increasing “illegal” hordes encroaching on our shores. The only problem is they can’t agree on precisely where that processing should occur.

Meanwhile, the true motives of boat people are questioned. Are they genuine refugees or merely economic migrants, daring to pick and choose where they would like to live? After all, they seem to be able to afford the exorbitant fees charged by the people smugglers.

Those who manage to reach our shores are routinely placed in mandatory detention, where they can languish for years – thereby hopefully discouraging their fellow countrymen from following their example. As for the relatively lucky few, who are now, if begrudgingly, being processed onshore and released into the community, how dare they get “preferential treatment”, enjoying such luxuries as television and a microwave when Australian pensioners are so badly off? Not to mention the jobs they could eventually take away from Australian workers…

The more I read of how much we care, the more puzzled I become. Surely, the solution is obvious: Why not simply improve the efficacy of “legal” channels used by “genuine refugees” to reach Australia “legitimately”? As a start, we could increase the speed at which the 16 million or so refugees languishing in camps around the world are processed. After all, to quote the Coalition: surely we want “to give Australians the confidence that only those invited to come to our country will enjoy the safe haven of our nation”?

But what about those who can’t seem to wait for an invitation and simply show up? Shh… don’t tell anyone, but there actually isn’t an orderly and polite line of refugees waiting patiently somewhere out there, preferably outside an Australian embassy or consulate.

The world according to refugees is chaotic and desperate, as it always has been. And usually it is only those with an urgent need to flee some immediate danger, who would be prepared to ignore any deterrent to make that dangerous journey on a leaky boat themselves or to send their children to freedom, an entire village scrounging around to pay for the “lucky” one or few … I should know: my family history is full of stories of boat people, as I’m sure, is yours.

My father’s father was fortunate enough to be allowed to settle in Toronto, Canada, after escaping the pogroms of Ukraine, arriving on Ellis Island in 1913 as a teenager with his widowed sister and her three children. No one “invited” them to come. A few years earlier, his future wife and her family had docked in Halifax in Novia Scotia after fleeing the Polish township of Lodz. While they would struggle with poverty during the Great Depression and my father would have difficulty finding a job in the Toronto of the 1940s due to his foreign-sounding name, they grasped at the opportunity to make a better life for themselves – still the aim of the majority of boat people to this day.
In 1925, my mother’s parents had the foresight to leave Poland for Palestine, thus avoiding the fate of much of the rest of the family, which was decimated by the Nazis some 15 years later. Then, on the eve of World War II, when my maternal grandfather was unable to find work to feed his young family, legend has it that he went down to the harbour in Tel Aviv where he found two ships, one destined for South America and the other for Australia. Fortunately, he boarded the ship bound for Melbourne where he settled in 1938, finding work as a laundryman. Today, he would be called an economic migrant, who left his home in search of a better life elsewhere. What shame is there in that? Isn’t that how your family progressed too? How many non-indigenous Australians can say they have been here since time immemorial?

Australia may have proven to be a safe haven for my grandfather, but the society he encountered was very closed. The White Australia Policy was in full swing, and 1938 was the very year when Australia’s Trade and Customs Minister Thomas White spoke against large-scale Jewish immigration at the Evian Conference, stating that “as we have no real racial problem, we are not desirous of importing one”.

After World War II, however, my grandfather, like many others, took advantage of the gradual opening of Australian society and the start of the waves of post-war immigration to bring out the other members of his family by boat, beginning with my mother in 1946.

Others were not so fortunate. Who remembers the MS St Louis today? I recently retraced the infamous “Voyage of the Damned” during a visit to New York’s Museum of Jewish Heritage. The story of the ship dispatched by the Nazis on 13 May 1939, carrying close to a thousand hopeful German Jewish refugees, only to be rejected first by Cuba and then by the US and Canada, remains seared in my memory.

After 40 days spent largely hovering off the coast of “the free world”, all avenues in the endless rounds of complicated negotiations were seemingly exhausted, and the “ship of shame” returned to Europe. Hitler had apparently been right: people seemed largely indifferent to the fate of those “filthy parasites”, despite the fact that they had paid the equivalent of thousands of dollars attempting to satisfy visa requirements. While several European countries were persuaded to provide the refugees with temporary shelter, close to a third would eventually perish in the Holocaust.

A memorial to the victims of the St Louis, erected last year in Halifax and known as the Wheel of Conscience, blames their rejection on hatred, racism, xenophobia and anti-Semitism. The passengers had been expected to “wait their turn” as the US, increasingly resentful of refugees, who were seen as competing for jobs made scarce during the Great Depression, did not even fill its restricted quotas – a fact only officially acknowledged 60 years later.

Sure, Nazism on the whole is dead and gone and those asylum seekers we reject today are not going to share the fate of those poor souls of yesteryear. But most of those who reach Australian waters are eventually found to be genuine refugees, even if they do not arrive with the appropriate documentation.

Article 14 of the Universal Declaration of Human Rights states: “Everyone has the right to seek and to enjoy in other countries asylum from persecution”. To deter those who, according to the 1951 UN Convention and its 1967 Protocol relating to the Status of Refugees, have the right to seek protection from us and all other 147 signatories, is to ignore our obligations as a democratic nation. We would be returning people to a situation where they run the real risk of persecution, or transferring our responsibilities to a third country, usually among the world’s poorest. Sadly, refugees have come to be seen as a “burden” rather than as people who can make a real contribution to their adopted home.

We do not choose our families or where we are born. As my own story shows, a quirk of fate can mean the difference between a life of freedom and the chance to acquire prosperity and a life of misery and subjugation. All we can do is to make the best of the cards we have been dealt. Human effort is the key to survival and improvement.

This point was brought home to me recently when my family celebrated Passover, the Jewish festival of freedom, with a Ukrainian couple and their teenage son. Although they had managed to find a new home in Sydney 20 years ago, this was the first time they had participated in such a celebration. “The Soviet Government tried to make us like everyone else,” the father told me. “They destroyed our synagogues. We did not have any Jewish libraries or books.” He was born near Kiev, the same city as my paternal grandfather, who had escaped to Canada about a century ago. Had he not done so, my own life experience could have been very different.

As I write these words, I sit surrounded by more than a hundred children of diverse creeds and cultures – a microcosm of modern Australian society – attending a chess competition in an RSL hall in Lidcombe in Sydney’s west. The room contains so many of the best elements of being Australian: Friendly rivals united by common interests, learning new skills and aspiring to improve. I cannot help but feel pride every time I come here.

Surely whether born here or only recently arrived by boat or by plane, we all share aspirational goals to make our way in this still relatively “lucky country”, which has given our families such a precious opportunity. Let’s not deny that opportunity to others.

Don’t get me wrong: I’m not saying that we should shoulder all the world’s refugees on our own. Nor should those people smugglers and others, who take unscrupulous advantage of the vulnerable, escape prosecution.

But even now, with the onshore processing of asylum seekers, the “floodgates” have not opened, despite fears to the contrary. In 2010 – the year when the largest number of boat people reached our shores – there were around 6500 unauthorised arrivals. Last year saw a total of about 4500 boat people, roughly half after the Government announced onshore processing arrangements last October. So far this year, about 40 boats have arrived, carrying around 3000 passengers. Compare this to the vast numbers who arrive here by plane or who access Europe or the US by boat. Australia is just too far away or too hard to reach by boat other than by the truly determined and desperate.

What I am asking for is a little kindness and understanding for those less fortunate than ourselves. After all, there but for a quirk of fate go I… and you… and indeed, the majority of Australia. And if you were that desperate, wouldn’t you want someone to extend a hand to you, as indeed was extended to your parents, grandparents or great-grandparents?
About the Author

Shira Sebban is a Sydney writer and editor. A former journalist with the Australian Jewish News, Shira previously taught French at the University of Queensland and worked in publishing. She is also a director on the board of her children’s school.