Dementia or?

The young man was adamant. “My mother doesn’t have Alzheimer’s”, he said. “She has dementia.”

That would be like saying his mother doesn’t have leukaemia, she has cancer.

Just as cancer is the umbrella word for a host of different types of disease, so is dementia the umbrella word for many types of disorders.

Dementia is the generic term for the loss of thinking, remembering, and reasoning skills that interfere with daily life and activities.

MCI – Medium Cognitive Impairment is not dementia. Instead, it is a stage in between the decline of normal aging and the more serious decline of dementia.

There are several different types of dementia, the most common being Alzheimer’s Disease. The next is Vascular and Mixed Dementia, followed by Frontotemporal Degeneration, and LewyBody Dementia. Each of these share symptoms but each is different and within each, there may be variations.

Alzheimer’s disease is a progressive neurogenerative disease. According to the Alzheimer’s Drug Discovery Foundation, (ADDF) “It begins slowly from a clinical point of view. The first symptom will likely be short term memory loss. As it develops, cognitive and functional impairment will become increasingly noticeable and severe. Aging is the highest risk factor, but Alzheimer’s is not a normal part of aging”. The ADDF website lists several causes: inflammation, misfolded proteins, mitochondrial dysfunction, vascular disease, synaptic loss, and loss of brain cells.

Early onset Alzheimer’s affects people under the age of 65. Although the symptoms may be the same, this type of dementia has a different genetic base than that of Alzheimer’s disease. In that it may pose great stress on family life, the ability to earn an income, and the stigma that comes with misunderstanding, this can be an especially cruel type of dementia.

Vascular and mixed dementia are the result of reduced blood flow to various regions of the brain. They commonly follow a stroke, or series of ministokes. Symptoms may include disorientation, confusion, balance, and/or numbness on one side of the face.

There are two types of Dementia with LewyBodies– Dementia with LewyBodies and Parkinson’s Dementia. They are associated with deposits of a protein called alpha-synuclein in the brain and they affect thinking, movement, behaviour and mood. The symptoms are more movement-based than Alzheimer’s and memory loss tends to come later, as the disease progresses. Lewy Body Dementia symptoms include REM sleep disorders, vision and spatial issues, and changes in movement. The second type has the symptoms of Parkinson’s disease, stiffness of muscles, tremors, a shuffling walk. In the first, cognitive and movement decline occur about the same time. With Parkinson’s Dementia, the movement disorders come first, with cognitive decline occurring about a year later.

Frontotemporal Dementiais an umbrella word for uncommon disorders that are the result of progressive nerve cell loss in the frontal (behind the forehead) or temporal (behind the ears) areas of the brain. Symptoms include changes in behaviour, personality, and language loss. It affects a younger group – typically between 40 and 45 — and may result in socially inappropriate behaviour and impulsiveness. Frontotemporal dementia is sometimes misdiagnosed as a psychiatric issue.

There is no cure for any of these types of dementia, nor are there any drugs that will alter or reverse their course.  There are some drugs that may alleviate some of the symptoms.  Most importantly, there are now over 120 drug trials underway, as well as research into the use of existing drugs, that offer possibilities.

In July 2018, philanthropist Bill Gates and the Alzheimer’s Drug Discovery Foundation (ADDF) co-founder Leonard Lauder announced a new initiative, Diagnostics Accelerator, to develop novel biomarkers for the early detection of Alzheimer’s disease and related dementias. Other philanthropists have joined Gates and Lauder in funding and, as a result, $30million has been dedicated to this initiative.

To learn more about these types of dementia, I recommend the following websites: The National Institute of Health, the National Institute on Aging, the Mayo Clinic, The Alzheimer’s Association, and The Alzheimer’s Drug Discovery Foundation.  The latter’s site, is an excellent source of information about lifestyle changes that may slow progression of the disease, as well as diet and nutrition.

The Touch Me Nots

Touch: It’s one word with myriad meanings.

There is the touch of encouragement, congratulations, compassion, the touch of bonhomie. There is the patronizing, demeaning touch that says “There,there, little one.” There is the sense of wonder touch: Can this beautiful child be really mine? There is the sensual touch, the one that sings the praises of skin. There is the sexual touch, the one that arouses. And there is the violent touch, the one that brings pain, loss of dignity, invasion and, sometimes, death.

Reading the comments of women who were offended by Joe Biden, I have to conclude that we have moved from the Betty Friedan and Gloria Steinem School of Feminism to a group of Touch-Me-Not women who seem unable to differentiate between the types of touch. Like their namesake flower, these fragile women recoil, close up, when touched.

I envision them encased in a Lucite cube, protected fore, aft and sideways, from any uninvited contact. Only those who already have an intimate connection are allowed inside their inviolate private space. How sad for them that they will never know the unexpected thrill that comes from touching a stranger and feeling an attraction. How discomforting that when they fall down, they will not welcome the hand of a stranger reached out to help. They will miss so many tactile experiences in order to protect their private space.

Private space: It’s a modern, western, notion. And a luxury.
The idea of private space in crowded cities is ludicrous. Try finding it in an Egyptian market, or a street in Calcutta. But then, one doesn’t even have to go that far. In the streets of the poorest parts of our world, where families huddle together for warmth, private space is a non-starter.

The Touch-Me-Nots must live a limited life. No rides on the bus or subway in rush hour, no crowded elevators. Line-ups at the supermarket or the movie theater will surely be offensive. Being attached to one’s private space will make an urban existence very difficult. And it undoubtedly would make one unsuitable for life as a public figure, expected to mingle with strangers. How will they manage on the floor of a day care center, surrounded by four year olds? If the senior citizen in the nursing home wants to dance, will they reject him? Would they withhold a hug from a grieving mother or widow? Would they touch the hand of a veteran in a military hospital? Will they replace the handshake with a nod of the head or a formal bow?

May they never know the skin hunger that women like me, 86 years old and widowed, feel. What we wouldn’t give for a hand on our shoulder, a kiss on the back of our heads, the stroke of a hand on ours. We long for the intimacy of touch.

Joe Biden is right when he says that touch is connection. A child hugs its parent’s leg. An old couple hold hands. A mother strokes the head of a sick child. A father ruffles the hair of a son or daughter. A puppy sits on its master’s foot. Lovers hold each other in the night, confirming their vows.

We cannot live fully without human touch. Study after study has shown the therapeutic value of the hug and how the feel of the human hand can affect the ability of newborn to thrive. So, let’s clone Joe Biden. We can use more men and women who truly empathize and are not afraid to show it.

Personally, I want a president who hugs the whole country, who feels its hurts and tries to mend them, who touches us with hope, who whispers in our ears that we will get through this, a President who is connected to the real lives of the citizens he represents. I would recoil if Donald Trump touched me. If Joe Biden gives me a hug, I will give him a big hug back.

A Mother’s Day Penance

via A Mother’s Day Penance

A Mother’s Day Penance

My mother died when she was in her fifties.

That was too young for her: And too young for me.

I did not have the chance to prove that I could be a dutiful daughter.

Oh, I did all the right Hallmark-card things. I remembered her birthday and Mother’s Day and Christmas.  I bought her presents, invited her to my home and visited hers occasionally.

I could make excuses for myself — I was the mother of two small children, had a full time job, a husband whose work required certain social commitments, she lived a distance away. But they are just excuses.  I was just too busy to be a dutiful daughter because my priorities were wrong.

I know that now, when I am in my mid eighties, having lived more than thirty years longer than my mother. Too late to be smart. I owed her more.  And not just in the sentimental sense of debt.  I should have let her share in my life and accomplishments. I like to think that if she had lived longer, I would have.

When in high school, I began to win prizes and medals, I resented what looked to me like her wanting to share the credit.  I had won those things, not her. Later, when I was getting ready to move to the United States with my husband, I had to get the long version of my birth certificate and I saw the discrepancy between her marriage date and my birth.  I confronted her and did that with the narcissistic “I”. It was all about me. How could she have been so strict with me about premarital sex when she was guilty of it herself? I never thought to ask her what discovering she was pregnant meant to her, what it was like to make that painful and difficult decision, whether she ever regretted it.

She was in her final year of nursing, so, despite the laws of the time, surely an abortion would have been possible. Instead, she gave up her nursing career, married, and produced a baby girl – me.  Every good thing that happened in her too short life after that was the result of her own ingenuity, hard work, and determination. All the bad, the violence, the constant worry about money, the disappointments, were the result of her decision to become a mother.

Whatever I have accomplished is a continuing gift from her. First life, then love, faith in me, education, loyalty.  She was not a women who gave praise, but when my brother and I went to empty her house after she died, it was clear that she was proud of me.  In every drawer, there was a medal, or a clipping, or a certificate. She had a right to expect more of me. I am sure that I was a disappointment to her. When I was on the stage, taking a bow, accepting a compliment, she should have been there, right beside me.

Worse, perhaps, in the year after my father died – also in his mid fifties – my mother changed. There was a carelessness about her, an apathy that was not like her. I did my thing – I took charge. “First, let’s see if there is anything medically wrong”, I told my brother. I involved our family doctor, and he arranged a battery of tests. The results were all fine. There was nothing physically wrong with her, according to the medical profession. So I gave her a lecture – that she was still a young woman, with life ahead of her, that she needed to get her act together. A few weeks later, she died.

I learned a hard lesson then, that when the behavior of someone you know well changes in a major way, there is something wrong. No matter what the professionals say. Now, a widow myself, still close to that first year after death, when I did not want to get out of bed, when grief paralyzed me, I am ashamed of my lecture to my mother. How little I knew, about life, about love, about loss. What a pompous ass I was.

In the introspective moments that are part of being an octogenarian, I realize now that I never knew my mother as a person. I missed the chance. Oh, I could tell you that she loved to dance, that she played the piano by ear, that she made great butter tarts and banana cake, that she had a sense of mischief, was a flirt, that she had tiny feet, that she was the weight of a feather, that she sat beside my father’s bedside, interpreting every twitch of that comatose man as a renewal of life for more than a year, that she cared for first her mother, and then her father, in our home, until their deaths, without a word of complaint.  A model of the dutiful daughter.

But I do not know what she thought of her life, what dreams she had, what regrets, whom she might have loved, what she was like pre-marriage, whether she was happy, who she was, deep down in the heart of her private self.

I never asked.

Now, I would.

Too little, too late.

Antisemitism, from Kristallnacht to Pittsburgh 

This has been a sombre week: November 11th was the hundredth anniversary of the end of World War 1, a solemn reminder of the awesome cost of war. A war that, unfortunately, was not the end of wars.

November 9th marked the night in 1938 when Germans burned 1000 synagogues, plundered homes and businesses, rounded up 30,000 Jewish men and sent them to concentration camps    – the night known in history as Kristallnacht, the night of the broken glass. Eighty years later, on October 27  – just two Sabbath ago – eleven Jews were killed while they were worshipping at a synagogue in Pittsburgh.

Clearly, in the intervening years, anti-Semitism did not go away. Nor was it confined to Germany.  In the thirties, while Nazis were terrorizing Jews in Germany, elsewhere Jews faced quotas at universities, understood that certain clubs and buildings would not accept them, met signs that said NO DOGS and NO JEWS outside hotels.  As Hitler’s armies advanced across country after country, the news of the persecution of Jews became more widely reported, only to be discounted or ignored.  Some influential Americans formed the America First movement, using its stance against the USA entering the war as a platform to demonize Jewish influence.  At the same time, the Canadian- born Father Coughlin attracted hundreds of thousands of listeners to his American radio broadcasts in which he embraced Hitler and Mussolini and denounced Jewish interests. And, in Washington and Ottawa, diplomats proudly wore the title “Arabist” and greeted the plight of Jews trying to escape Hitler with indifference.

With the end of World War two the world was forced to acknowledge the consequences.  Newsreels portraying the awful truth of the concentration camps, the pictures of Jews being rounded up, marched into gas chambers, the testimony of survivors and the Nuremberg trials made it impossible to ignore the cost of that indifference.  The horror of the holocaust silenced anti-Semitism. Temporarily.  For a while, the conscience of the world was awoken and  it was socially unacceptable to express antisemitic views.

But then came the holocaust deniers, and the birth of Israel. Israel provided the anti-semites with cover. It was not that they were against the Jews: it was Israel that they were against. It is a tragic irony that the country born from horror of the holocaust would become accused of fascism and apartheid,  would be the butt of United Nations condemnation. When it turned out that the Israel, like other governments, was not perfect, that its leaders made political and public relations blunders, instituted policies that were debatable, those things counted more in world’s opinion than Israel’s  giving up the Sinai to make peace with Egypt, its offering viable ways to create a two state solution,  the very creation of a democratic vibrant state, its contributions to the world in medicine, technology, science . The Palestinians became the cause celebre, while terrorists stalked the streets of Israel, a coalition of Arab armies led by Egypt and Syria invaded on Yom Kippur, and Israelis, to this day, with rockets raining down continually, have never known a moment of true peace.

In this century, antisemitism comes from both the far right and the far left. and has been openly and sometimes violently expressed in France and Germany.  Here, in North America, there has been an onslaught of desecration of synagogues and Jewish cemeteries, news  items often buried on the back page, if reported at all. On campuses all across the United States and Canada, the BDS movement — Boycott, Divest, and Sanction Israel – is camouflage for persecution of Jewish students and increasingly angry displays of antisemitism.

At the same time, President Trump has whipped up a nationalism that exploits the many anti-groups – anti-black, anti-gay, anti-women, anti- Muslim, anti-elites, all the groups looking for scapegoats for their grievances – they have all found an echo of their discontent in his rhetoric.  He did not create the hate that dominates the news today and that led to the Pittsburgh murders – but he gave that hate a home.  He has made hate acceptable.

So, yes, what happened in Pittsburgh was a shocking event.  But we should not have been shocked “that it happened here”. And when politicians try to reassure us by telling us that this is not what America is, well, perhaps not.  But there is a grave danger that this is what America is becoming.

Prosecuting Evil:War makes murderers of us all.

Let me introduce you to two remarkable men, Canadian film producer, Barry Avrich, and Romanian born Ben Ferencz, investigator of Nazi war crimes, Chief Prosecutor for the United States Army at a trial in Nuremberg, and advocate of the establishment of an international rule of law and of an International Criminal Court.

If you happened to watch an interview on Sixty Minutes last year, you will have met Ben Ferencz. That is how he came to the attention of Avrich.  His family was watching the program and they called out to him, “You have to come and see this man.” Intrigued, as everyone who meets or hears Ferencz is, Avrich did some research and was surprised to see that although there were media interviews here and there, particularly in legal circles. no one had gathered together the account of his inspiring life. He set out to correct that and the result is Prosecuting Evil, a documentary that premiered at the Toronto International Film Festival a few weeks ago.

I was privileged to see it at its American Premiere at Temple Emanu_El in New York City. This is an important film, important at any time in our history but even more so now when we find ourselves in this frightening time, when bigotry, intolerance, hate, every kind of evil, has been given license to thrive.

Ben Ferencz is now 99 years old and a great advertisement for aging.  The man has all his intelligence, his wit, his humor, and energy.  I fell a little bit in love with him which won’t do me the slightest bit of good as he has been happily married to the same woman for 72 years.  As I heard him describe his first exposure to the concentration camps and then his role as the prosecutor in the Einsatzgruppen Case, I was impressed by his ability to separate emotion from reason.

His description of the camps is vivid – from the emaciated survivors to the bone filled ovens and the stench over all.  But, when it came to prosecuting the 22 men he put on trial, he insisted that it was not vengeance or revenge that would bring the men to justice, but the facts.  And he had the facts, for the Germans had carefully recorded in a notebook their forays into towns and villages, scrupulously noting how many Jews they had killed each day. All of those men were found guilty, 13 received death sentences of which four were carried out.

In the documentary, Ferencz focuses on one of the Germans, pointing out that he was a cultured, educated man, a good husband, good father, good neighbor. “Except”, he says “he killed thousands of Jews.” What made him cross that line?  There is no doubt in Ferencz voice.  “War”, he says “War makes murderers of us all.”

It is for that reason that he has been an ardent advocate of an international court which, he believes ,used properly, could help the world avoid wars.

Ben Ferencz’ family fled pogroms in Romania and emigrated to the United States where they settled in Manhattan’s Lower East Side, a crowded, ghetto-like home to many immigrants.  There was little money, but education was valued. A teacher recognized his abilities and encouraged him to enroll at City College of New York where he won a scholarship to Harvard.  He enlisted in the Army and served in an anti-aircraft artillery unit.  In 1945, he was assigned to the team that collected evidence for war crimes. After leaving the army, he was  asked to return to Germany, to join the prosecutors at the Nuremberg trials. Following that, he helped secure reparation for the Nazis’ victims, and played an important part in negotiations that led to the historic Reparation Agreement between Israel and Germany.

Returning to New York in 1956, he entered private practice and then joined the movement to establish an International Criminal Court to deal with crimes against humanity and war crimes.  He remains disappointed that although the USA signed the treaty it did not ratify it. He has not hesitated to criticize many of the actions of the United States, from its role in Vietnam to the Iraq war, Trump policies, and the current political climate.

He is a serious man who is full of joy.  Despite all that he has seen of evil, he and his wife raised four children.  That is surely the definition of hope. And instead of giving into despair, he espouses a route to change the future for the better.  That is also the definition of hope.

I urge everyone to make it a point to see this film and stress that its importance goes beyond the obvious relationship to the Jewish community.  Over the next few weeks and months, it will be available in many cities in Canada and The United States.   In Toronto it will be shown on November 11th, in a special benefit for the survivors of the holocaust who are living in poverty.  The event will take place at the Ted Rogers Hot Doc Theater.


Kipling’s The Power of The Dog

IMG_0464It is one month since my beloved cavalier King Charles, Brewster died.  He was almost thirteen years old, my friend, my companion, my protector, and a warm, loving link with my husband. 

Brewster came into my life when my husband was in the middle stages of Alzheimer’s.  He walked into the house, turned into the library, and climbed on my husband’s lap.  And right into both of our hearts. And some years later, when Alzheimer’s had a greater hold on my husband, and conversation was very limited, he would still remember to ask, “Where is my doggy?”

And his doggy was right beside him, along with the rest of the family, when Oscar died.

As I mourned, so did Brewster, sleeping on Oscar’s pillow, looking at me, questioning me, “Where is my master?”

In those months after Oscar’s death, I don’t think I would have gotten out of bed, had it not been for Brewster.  The temptation to just pull the sheets up over my head, give in to grief, and let the rest of the world go by was tremendous.  But I could not.  Brewster needed to be fed, Brewster needed to be walked, and Brewster liked and got attention.

He was a beautiful boy -in dog parlance his color was known as Ruby but it was more terra-cotta than that, with platinum streaks.  Women stopped to rub his ears, envious of his coloring.  Children adored him, and he them. Other dog owners asked about his breed.  He was clearly a Cavalier, but he was big for the breed, so confusion was understandable. Slowly, as Brewster pulled me into the world, I began to reconnect with it.  The grief remains, and always will, but it no longer paralyzes me.  Thanks to Brewster.

As he had spent a lot of time with my daughter’s two Labs, Luna and Clemmie, he preferred big dogs to little ones but like all of his breed, he recognized his cousins.  He had very nice dog manners, put up with puppies pawing him and nipping at his ears or climbing on him, with unlimited patience. The love of his life was Clemmie and although he had neither the equipment or the height to consummate that love, he never gave up trying.  And if there had been a cartoon balloon over Clemmie’s head, it would have said, “Men! What can you do about them.”

At home he liked scotch flavored ice cubes, and was a frustrated decorator. Wherever there were cushions, he was there, sorting them, examining them, throwing some on the floor, rearranging the rest to suit himself and then carefully circling himself down into a comfort zone on top of them. He had no interest  in toys, or balls, or games, or tricks. Brewster had decided that it was enough in life just to be.  A lesson all of us could use from time to time.

We were joined at the hip.  I organized my small social life around his needs.  No dog walkers for me – whatever the weather, I was up and out with him four times a day, and always home to give him his meals.  His favorite time of the day was the cocktail hour when I had my scotch and he had his bone stuffed with cheese and we sat together to look at television. What a vocal critic he was.

I miss him terribly and many friends, knowing what he meant to me have sent me notes and cards.  The Canadian actress, Nuala Fitzgerald Cowan, sent me a Rudyard Kipling poem that will resonate with all dog owners:

The Power of the Dog, Rudyard Kipling, 1865-1936

“There is sorrow enough in the natural way

From men and women to fill our day;

And when we are certain of sorrow in store,

Why do we always arrange for more?

Brothers and sisters, I bid you beware

Of giving your heart to a dog to tear. 

Buy a pup and your money will buy

Love unflinching that cannot lie –

Perfect passion and worship fed

By a kick in the ribs or a pat on the head.

Nevertheless it is hardly fair 

To risk your heart for a dog to tear. 

When the fourteen years which Nature permits

Are closing in asthma, or tumor, or fits

And the vet’s unspoken prescription runs

To lethal chambers or loaded guns

Then you will find – it’s your own affair 

But — you’ve given your heart to a dog to tear. 

When the body that lived at your single will,

With its whimper of welcome, is stilled (how still!).

When the spirit that answered your every mood

Is gone — wherever it goes — for good.

You will discover how much you care,

And will give your heart to a dog to tear. 

We’ve sorrow enough in the natural way

When it comes to burying Christian clay.

Our lives are not given, but only lent,

At compound interest of ten percent.

Though it is not always the case, I believe,

That the longer we’ve kept ’em, the more we do grieve:

For, when debts are payable, right or wrongs,

A short-time loan is as bad as a long —

So why in — Heaven — (before we are there)

Should we give our hearts to a dog to tear?”

Dear Brew: My heart is torn, but I can bear it because it was worth it, to love you and to be loved by you. Climb on OScar’s lap and wait for me.