A Walk With Grief

In a few days I will mark the third anniversary of my husband’s death, three years in which I have walked hand in hand with a very personal grief.
The mourning began long before that day – ten years ago now – when Alzheimer’s began to steal aspects of my husband’s essential self.
First I said goodbye to the man who had always managed our finances: The Princeton economics major and former bank director could no longer balance our checkbook
Then it was adieu to the husband who was a chef: The man who took pride in his soufflés could no longer follow a recipe.
The elegant man became one who could not button a shirt or put on his clothes in the correct order.
Somewhere along the way, real conversation between us died and the faces that had a place on the periphery of his life began to disappear from his memory bank. He could fake it, smile, seem to be interested but there was no real awareness. The eyes were often blank.
And then Alzheimer’s claimed his dignity. The dynamic adventurous intelligent husband I married was an infantilized but beautiful shell.
I began then to pray for death.
So why then, when it came did I grieve? Not for him: to him death came as a friend.
No. I grieved for myself.
What did I learn about grief during the past three years? That no matter how many medical professionals try to put it into stages, compartmentalize it, grief is an intensely personal emotion.
When one becomes a widow or a widower, one discovers a whole world of widowdom. You become aware in a new way of others who have shared this path and look to them for a way through. But no one else can really help you because their way will not be your way.
I have seem some who looked untouched: they appeared to be able to pick up their lives and keep moving as though nothing had happened. But then, I was not with them at four o’clock in the morning. Perhaps that was where, in the privacy of their own soul, they experienced their grief. Or perhaps, by the time death came, their marriage was empty of emotion. With death, they found freedom.
Many, especially the widows,become part of a group, seeking whatever solace can be found in numbers.  They travel together, go to the theater together, become a subset of society, not one, but many.
Some opt for constant movement, dashing here and there, off to this place or that place, hoping, perhaps, to stay one step ahead of the reality of their lives. It is as if they believe that if they move fast enough, grief will not catch up to them. It will. And the longer one puts off walking into the center of that pain, the more painful it will be.
My own path for the past three years has taught me that grief is never static, it does not stay the same from day to day. I have moved back and forth through numbness; exhaustion; an inability to breathe; sharp, acute, very real heartache; rootlessness; lack of purpose, and the emptiness that is true loneliness.
And I have discovered the true meaning of the  word loss. Loss. We substitute that word for  more brutal word, death. People say how sorry they are that I lost my husband.
But I lost more than him when he died: I lost a vast part of myself. That understanding of what loss truly is has been reinforced over the past year when three of my dearest friends died. With each of them another part of my past, part of my self, has disappeared. Who will be left to testify to whom, what, I was? I am losing anchors to my past. That is loss, and it is forever.
And so, I believe, is grief.  The nature of it changes. Some days it is distant murmur in the cacophony of life.  But it is there, and comes at you, unexpectedly, triggered by who knows what.  It is the price of loving. And that is a price I am willing to pay.  For I loved, and I was loved.
The man died three years ago but the love remains.

The Alzheimer’s Diary, One Woman’s Experience from Caregiver to Widow is available at your favorite bookstore. All profits from the sale of the book support Alzheimer’s research.



Of Mice and Men and Alzheimer’s

The headline on the article reads:

“New Alzheimer’s treatment fully restores memory function”.

What great news! So great, that headline, or variations of it, have been circulating through the internet, forwarded from friend to friend for several years now. They refer to tests being conducted in many different labs around the world. As my husband died of Alzheimer’s, everyone I know is quick to send them on to me.

Unfortunately this, and other headlines like it, are misleading.

When one reads the stories that follow,it turns out that the patients involved in these many trials were mice.

Alas, my husband was not a mouse. And neither are the millions of men and women around the world who, along with their caregivers, live with the death sentence: Alzheimer’s.

It is a long way from a mouse to human being. At a European workshop held in London in May 2010, the conclusion of a study of the efficacy of mice was that although mice are among the best models for cures in humans,

“Mice are not always reliable as preclinical models for human disease and the scientific literature is littered with examples of drugs that worked well in animals but turned out to be ineffective in clinical trials on humans. These failures cost the pharmaceutical industry millions of euros.”

Even if the mouse/human model were a perfect match, it would take years, and more than a billion dollars, before the drug in question became available to human patients. Getting a drug to market is a long process. In some unusual cases, the preclinical process can be completed in two years but the average is five to seven, at a cost of millions. At the end of that trial period, the FDA, or  its counterpart in other governments, must give approval for clinical trials which take another five to seven years. On average, it takes 12 years to get a drug to the patient. One out of 10,999 might make it, as a cost of approximately 1.8 billion dollars.

Oh to be a mouse!

Or for that matter, oh to exchange Alzheimer’s for some other disease!

Comparing diseases is an uncomfortable subject. Whichever one we, or someone we love, has, (even the common cold) is the worst at the time. But some diseases do offer more hope than others. The Alzheimer’s Association reminds us that of the top ten causes of death in America, Alzheimer’s is the only one that cannot be prevented, cured or slowed.

Five times more people die of Alzheimer’s than Aids. Yet Aids receives 23 times more than Alzheimer’s of the research budget of the National Institute of Health. In the United States, cancer research gets 5.4 billion, HIV/aIds $3 billion, heart 1.2 billion. Alzhiemer’s research $566 million. Please note the diference between the billions and the millions: Huge.

So, headlines about cures are deceiving. There is NO treatment  that will alter the course of Alzheimer’s. There is NO cure . Everyone diagnosed with it will die, slowly, dignity first, then the body.

My quarrel with the misleading headlines has two aspects.  First, they give false hope. And most important, they may discourage fundraising. Read a headline like the one quoted above, and why would you write a check for Alzheimer research?  Yet the need for research money is greater now than ever, There is no shortage of ideas, or scientists willing to stake years of their lives trying to find a cure. There is a shortage of funds to finance their projects.

The idea that there might be a cure that did not get to millions of patients, including someone you love,  because we failed to fund the project? That should be society’s nightmare. It is mine.

The Widow’s Dower: Skin Hunger

Sutton's Place

Fifteen months into widowhood, what do I miss?

Touch and Talk.

Sex, yes, of course, but the desire for that pales beside the need to be touched.  I have a serious case of skin hunger.

Couples who live together in intimacy take for granted the many times in a day when they touch each other, from bumping into one another in the bathroom, to fingertips brushing over a coffee cup or one cold foot seeking out the warmer one under the blanket.

I miss my husband’s hands on my back, applying the suntan lotion in the hard-to-reach place; moving up and down with the zipper, turning my shoulders to the light where, his face a picture of fierce concentration, he would try  to fasten a clasp on a necklace or that tiny hook at the top of the dress, swearing all the while. Then, when he had conquered that pesky closing…

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An Alzheimer patient’s right to have sex

Sutton's Place

Who has the right to decide whether an Alzheimer’s patient may have sex? The patient’s children? The institution?

That is one of the many questions raised by an article in the NYTimes (Tuesday, April 14, 2015) in which reporter, Pam Belluck, reports on a case that is before the courts in Iowa.

78-year-old Henry Rayhons is charged with third degree felony sexual abuse of his wife, who was, at the time, in a nursing home, diagnosed with Alzheimer’s Disease. He has admitted to pulling the curtain around her bed, and having sex with his wife.

Ms Belluck writes that “it is widely agreed that the Rayhons had a loving, affectionate relationship.” He visited his wife twice a day. Although she could not remember her daughters’ names, or in cognitive tests, recall certain words, a staff member says she was always pleased to see her husband.

Mrs. Rayon’s daughter objected to the sexual relations and…

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An Alzheimer patient’s right to have sex

Who has the right to decide whether an Alzheimer’s patient may have sex? The patient’s children? The institution?

That is one of the many questions raised by an article in the NYTimes (Tuesday, April 14, 2015) in which reporter, Pam Belluck, reports on a case that is before the courts in Iowa.

78-year-old Henry Rayhons is charged with third degree felony sexual abuse of his wife, who was, at the time, in a nursing home, diagnosed with Alzheimer’s Disease. He has admitted to pulling the curtain around her bed, and having sex with his wife.

Ms Belluck writes that “it is widely agreed that the Rayhons had a loving, affectionate relationship.” He visited his wife twice a day. Although she could not remember her daughters’ names, or in cognitive tests, recall certain words, a staff member says she was always pleased to see her husband.

Mrs. Rayon’s daughter objected to the sexual relations and the nursing home staff agreed on the grounds that Mrs. Rahyons was not capable of consenting to sex.

So many aspects of this story trouble me. First, this was not a case of a man having sex with an Alzheimer’s patient. This was a husband and wife making love.

Married couples do not ask each other if they “consent” to sex, or try to determine first if the partner still knows what sex is. They ask each other in more loving ways – a touch, a stroke, a whisper in the ear. Some of the most intimate things are unsaid.

Ms Belluck writes that there was no sign of resistance or abuse. That would rule out marital rape. I presume the patient was not tied down or restrained. As it was a double room, and the other patient reported hearing signs of sex, but not cracks of whips or screams, it would not seem to have been violent sex. It was, after all, a hospital bed, not a Playboy playpen.

Was it consensual? Although an Alzheimer patient might not recall words, or faces, might not even be able to feed him or herself, he or she is capable of anger and they often exhibit great strength. My guess is that if Mrs. Rayhons didn’t want sex, she would have made it known by calling out or pushing her husband off the hospital bed.

I come at this story with a very personal point of view. I cared for my Alzheimer’s-diagnosed husband for seven years. I was able to keep him at home during that time. I gave up bathing him, reluctantly, only when it was clear I was not strong enough to do it safely. We shared our bed until two nights before he died when he was moved to a hospital bed, in our room. There was not a day during this time when we did not touch each other. If it had been necessary to put him in a nursing home, you can be sure, I would have pulled the curtain around the bed and climbed in beside him, as often as I could.

He had Alzheimer’s, but we were still married.

And even though he had Alzheimer’s, he was still human.

Long after the brain has forgotten many things, the body has a memory of its own. The irony here is that nursing homes know this. They have a list of things that are considered “inappropriate conduct” – one of them is masturbating in public places. If an Alzheimer patient can recognize the desire to pleasure him or herself why would anyone decide that a married couple would need the consent of their children or the institution before they can make love to each other  in the privacy of the patient’s room?

I suspect that some of the problem rests in the belief that we should outgrow the need for sex, that there is something unseemly about the elderly expressing love. The Hebrew Home at Riverdale in the Bronx is considered to be one of the finest nursing homes in the United States. Several years ago, it brought into affect a sexual rights policy based on the belief that aging does not mean a loss of sexual intimacy. Daniel Reingold, chief executive officer of the Home is quoted in the Times that family members can be very aggressive about opposing this policy.

Dear children: Please do take an active role in the care of your aging parents. Just please do remember that long after you have forgotten where you put your keys, you will remember what it feels like to make love, to be touched, to be embraced. The need for human contact continues as long as the heart beats.

Grief: The Poor Me Stage

This is an excerpt from The Alzheimer’s Diary, by Joan Sutton available at Barnes and Noble, Amazon, or your favorite book store.

Sutton's Place

By now, most people recognize that the stages of grief that are based on the Kubler-Ross model of how the dying encounter death are not a map.  Each of us walks the lonely road of mourning loss in our own way.  Still,  when you are overcome with anger, restlessness or loneliness, it is helpful to know that others too have been down  this path, and have managed to reach a place of healing.

But there is one aspect of grief that no one talks about it, because it isn’t “nice”.  Listings  of the stages don’t mention it. It’s not ennobling, it’s not romantic, it’s just plain unattractive. In this world where words are so often used to cloak  the truth — (no one lies, anymore, they just “misspeak”) — the tendency would be to soften what I am about to say.

But, let’s be blunt and admit it, some part…

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Alzheimer’s and hearing loss

Alzheimer’s and hearing loss.

Alzheimer’s and hearing loss

There is one thing that might be worse than being diagnosed with Alzheimer’s: Being diagnosed with it incorrectly,

Yet, because the symptoms of early dementia are similar to those of hearing loss — anxiety, depression, isolation denial, distrust, impatience, what seem to be memory problems – that can happen.

But the cognitive loss of the dementia patient is not the same as someone who simply does not hear well. After all, you are not going to remember something if you didn’t hear it in the first place. And you are not going to do well on cognitive tests if you can’t hear, or understand, the questions.  So, if you have not admitted to a hearing problem, if it has not been diagnosed and treated, there is a chance that you may be misdiagnosed, told incorrectly that you have early Alzheimer’s, with all the resulting medical and social implications.

The opposite can also take place.  Through all the years of our marriage, my husband had a severe hearing impairment, partly the result of genetics – many in his family suffered from various degrees of hearing loss — and partly the result of shooting, as so many men did in his day, without wearing ear protection. In retrospect, I suspect that there were early signs of Alzheimer’s that we dismissed as hearing issues.  Had we realized that, the outcome would not have been any different, but I do wonder what it felt like for him. Did he know that there was more than hearing at stake and, if he did, and did not tell any of us, it must have been a very lonely and frightening time for him.

Now, studies have shown that there is a link between hearing and cognitive loss, that the hearing-mpaired are at greater risk for developing Alzheimer’s.  Without getting into the possible scientific explanations for this, some things are obvious.

  • Hearing loss can lead to isolation with the depression and sedentary lifestyle that are factors in developing dementia.
  • Like the rest of the body, the brain needs exercise to remain healthy.  Untreated hearing loss can get in the way of that by restricting conversation. making going to the theater, movies, lectures, playing games, very difficult, if not impossible.

Clearly, if you are going to do everything you can to prevent Alzheimer’s, then making sure wax is removed from the ears, having regular hearing tests, getting aids -and wearing them! – is an important step.  Again, there are no guarantees but, at the very least, your present life – and those with whom you interact – will improve.

Living with my husband. I learned a lot about this handicap. Like many men, at first he didn’t want to admit that he had a problem.  There were other things he could blame –people didn’t speak up; they didn’t speak clearly; it was the unusual accent.  When he finally did accept a hearing aid, he didn’t want to wear it.  It was uncomfortable; he thought it made him look old. Etcetera, etcetera.  Everyone who lives with someone with a hearing problem will be familiar with all the excuses.

I learned to find the quiet corner in the restaurant and seat him where there would be no one talking behind him. To avoid places with a lot of mirrors and bare floors, where sound is amplified. To ask that the background music be turned to a lower volume. To place him at the middle of the table, where his chances of participating in conversation were better than if he sat at the traditional head.

Ironically, now I too have lost some of my hearing. I wear  state of the art hearing aids.  They work very well — when I wear them. But they don’t  work when I leave them on the dresser which is where a lot of hearing aids seem to end up. Why? because I forget to put them in. Or the battery goes out – with a beep, beep, beep in the middle of the conversation or the concert or play. Then, I either have to fake it or do the embarrassing thing – take the aid out of the ear and replace the battery in front of others. If am in a dark place, forget it. I fumble around and the battery ends up on the floor.

But even when I wear it, there are some situations where I still have difficulty hearing. Like many people who find themselves with this condition, I no longer hear the high notes clearly. I hear alto voices very well, but the soprano notes are lost.My husband experienced the same thing which is why, when I seated a woman beside him, I would tell her, “Speak <strong>low</strong>, not loud, but <strong>low</strong>”. (The last thing someone wearing a hearing aid wants is someone shouting into their ear). Hearing some notes and not others often leads to misunderstanding. Family members will say, “He hears when he wants to hear”, or “She has very selective hearing.’ The first statement is not true. What you hear is not always a matter of choice. The second statement is: the ear is a very selective instrument.

Part of hearing loss flows from something called speech discrimination. Someone may say one thing, but the hearing impaired will hear something entirely different. Recently a friend told me he needed  a wedge for sleep – I thought he said a wife. The result was comic, but in some situations that kind of speech discrimination could be disastrous. In a poor hearing environment, without a hearing aid,  I will “get”  some words and not others. I hear vowels, but the consonants are often missing. This will frustrate the speaker who might well lose patience with me and decide that I am only hearing what I want to hear when, in fact, I do want, very much. to hear everything but, without assistance, I don’t, I can’t.

Sit me in a noisy restaurant, or a cocktail party where there is a lot of background noise, talk to my back, or call from another room, and it will take tremendous concentration on my part to understand what you are saying. Put your hand over your mouth when you speak and you make it impossible for me to do the lip-reading that the hard of hearing automatically rely on to augment sound. The healthy ear is a wonderful instrument – it can discriminate – it does not hear all the sounds directed at it at the same time equally.  Some hearing aids promise to diminish  background noise and the more expensive ones have pushbutton controls that help with that, but they can be difficult for the older person who isn’t technologically adept (me!) to manage.  So being in a crowded place wearing a hearing aid may mean being  subjected to a cacophony of noise. As a  quiet restaurant seems to be a very rare thing today, given the choice, I prefer to entertain at home, where I can control the environment.

Society does not have much patience with the hearing-impaired. A private conversation in public is difficult  because the speaker may have to speak so loudly that everyone else can hear and sometimes, the afflicted partners speak too loudly for comfort.  As to the intimate words of love whispered in the ear, well, I wonder how many I have missed.

There is a difference, of course, between true hearing problems and what I call husband’s hearing (or wife’s), the tuning out that can take place in a long-term partnership.  When a couple live together, the relationship can take on the aspects of a comfortable old slipper.  The routines are established and we tend to assume we just know that the other one is saying or going to say. This can lead to the husband declaring, “You certainly did not tell me that your parents were coming to stay with us”, or the wife. “I asked you if you wanted to go on a cruise and you said “yes”, you definitely did.” This kind of marital back and forth   is the stuff of jokes and they can be very funny.

But there is nothing funny about the real thing — hearing impairment is definitely not a joke. Especially not when it may be a factor in getting Alzheimer’s Disease.

Alzheimer’s: The Parental Checkup

Alzheimer’s: The Parental Checkup.

The Season of Memories

With the end of November we enter the season of memory, a time when memory is no longer an abstract explanation in a scientific journal, but a version of Dickens’ past, present and future ghosts, an actual presence in our lives.

Wherever we set a festive table, for however many, that table will be crowded with absent faces, removed by distance or death, but present, still, in our hearts.

Each familiar face becomes a collage of past and present incarnations. Somewhere inside that gawky awkward teen age boy there is the bright-eyed three-year old imp, who never tired of peekaboo. That fifteen year old (going on thirty), filled with adolescent angst is still the innocent who thought her mother could cure all her problems with a kiss. The arthritic knuckle of the oldest in the room contains generations of history, some of it still untold. I may wear the gloss of sophistication but, at heart, I am still the little girl from Port Credit. We may remake ourselves as we go through life, but our pasts remain a constant.

Whatever the menu, however fancy, cooked by me, or someone else, in my heart’s eye, I will see the plain cloth-covered white bowl in which my mother delivered her annual brandy soaked pudding; I will smell mincemeat; taste my father’s pulled taffy. This one meal will be accompanied by a lifetime of meals served at other tables, some very plain, others, elaborate, all permeated with the bitter sweetness that is life.

The bells of the Salvation Army will take me back to other bells: wind chimes on the porch of a log cabin in Maine, morning calls to mass in Manhattan, the caroling chimes of St. James in Toronto on Christmas Eve, the jingle of the reins of a horse-drawn sled at a Quebec inn, Big Ben resounding through a London fog; bells, tolling away the years, but not the memories of holidays past.

The seasonal music evokes a cascade of memory. Almost fifty years later, I can still see and hear my children, singing “Away In A Manger”; my mother, tearing up at “Silent Night”, a voice crooning, “I”ll be home for Christmas, you can count on me….”

He won’t, of course, be home, and that is why “Auld Lang Syne” resonates.

Should auld acquaintance be forgot,

And never brought to mind?

Should auld acquaintance be forgot,

And days o’ lang syne!


And there’s a hand, my trusty fiere,

And gie’s a hand o’ thine,

And we’ll tak a right guid willie-waught

For auld lang syne!

And days o’ lang syne!

Yes, this is the season of memories. For those who have recently experienced the death of someone beloved, it will be the beginning of what I call “the year of the terrible firsts”. Their loss will be real, sharp, acute, at moments, unbearable. As the weeks, months, years pass, we who are left learn to bear the unbearable: the pain is there, but hidden from view, held back by the determination to not spoil someone else’s day. In that sense, we become martyrs to our grief.

In this season of memories, we need to remind ourselves that for every goodbye, there was a hello, and aren’t we glad that we had those hellos, those days of auld lang syne?

The season of memories: a time to cherish what once was and, in some ways, always will be.

Joan Sutton New York book signing

coverallstores copyJoan Sutton will be at a book signing today, November 6th, from five to 7 pm, and Dempsey and Carroll, 1049 Lexington Avenue, (75th Street) New York. Please join us!

Joan Sutton talks about Alzheimer’s on Global TV


Joan Sutton’s book, The Alzheimer’s Diary, One Woman’s Journey from Caregiver to Widow is available at your bookstore or online.






Joan Sutton Straus

Joan Sutton Straus










World Alzheimer’s Day

Today is World Alzheimer’s Day.

I will not ask you to jog, run, eat rubber chicken in a  hotel ballroom, gamble, pour ice over your head, shop, or attend a fashion show to honor this day.

No, the project I have in mind is simple:  It’s called, Get Your Head Out of The Sand.

I can throw numbers at you:  750,000 Canadians, 8 million Americans, already have been diagnosed with Alzheimer’s (AD).  And every 68 seconds, another person joins those numbers. Worldwide, the statistics are staggering.

But the most important number is zero: None.  That is how many of those will survive.  None.  Everyone diagnosed with Alzheimer’s has received a death sentence.

Because – again. that important number, none — there is not one drug on the market that will alter the course of the disease. Zero. Not one.

In the middle of my seven years as a wife to a beloved man with Alzheimer’s, what I wanted more than anything was that pill, that prescription, but, no matter where I looked, it wasn’t there.

I could not do anything to help my husband fight the disease.  My sense  of helplessness was profound.  That was why I joined the Alzheimer’s Drug Discovery Foundation, (ADDF) and helped found ADDF/Canada. ADDF’s sole purpose is  the discovery and development of drugs for the prevention and treatment of Alzheimer’s disease and related dementias. And all money raised in Canada goes directly to Canadian researchers across the country.

What I could not do for my beloved husband, perhaps, through ADDF, an army of us can do for the next generation.And we need to be an army, to have a voice as powerful as the voices that forced attention to AIDS and to breast cancer.  We all have a stake in this.  We may become one of the statistics — the one out of every three over 80,  the one in eight over 65, who will get AD.  We may become  one of the emotionally and financially exhausted caregivers. We will certainly be one of the taxpayers who will bear the cost.

Society cannot afford to lose this much brain power. And society will not be able to afford the billions that this disease will cost as the numbers grow. The mounting cost of care – already over $200 billion in the US  — can break the health care systems across North America.

So, how to honor World Alzheimer’s Day?  Make a donation to research.  The recent $31million initiative sponsored by the Canadian government is a good start, but our personal contributions are still vital.  As Dr. Howard Fillit, the Chief Science officer of ADDF wrote  in a recent letter. “Last year, we were only able to fund 10 percent of the high-quality drug discovery research proposals we received”.

There is no shortage of ideas.  Scientists across the world are pursuing many different routes to the treatment/cure of Alzheimer’s  The thought that the drug we want might be out there, but would not get to market because we didn’t have the funding – that’s outrageous.

Please help.  ADDF and ADDF/Canada are registered, tax deductible charities.  Checks should be sent to ADDF, 57 West 57Th Street, Suite 904, NY. NY, 10019. Canadian checks should be identified as  ADDF Canada and sent to that address  c/o Joan Sutton Straus. Being thrifty, we are using the same address to save money on overhead: Every dime you give will go to research.

And, of course, all proceeds from the sale of my book, The Alzheimer’s Diary, One woman’s experience from caregiver to widow benefit ADDF/Canada.


Joan Sutton and Dr. Howard Fillit on Alzheimer’s

Interview with Joan Sutton


Dahlia Kurtz of station CJOB Winnipeg interviews Joan Sutton about her book, The Alzheimer’s Diary


The Alzheimer’s Diary: Readers’ Comments


Comments about The Alzheimer’s Diary by Joan Sutton 

available at your favorite on line book store

“I just finished reading The Alzheimer’s Diary. It has to be one of the most beautifully written books I have every read…. really astounding. And so many of the observations she made were things that probably most of us take for granted, until they’re gone. So, an amazingly worthwhile read.”

Dr. David Hung

President and CEO


San Francisco, California

“Joan has written an important book about a disease that will likely touch everyone eventually and can bankrupt the world’s healthcare systems unless a cure is discovered.”

Diane Francis,

National Post.

“With practical advice for caregivers, important information about the state of Alzheimer’s research and a moving record of her life after losing a loved one to Alzheimer’s, Sutton’s powerful memoir is at once distinctive, instructive and deeply reliable.”

Alzheimer’s Matters blog, The Alzheimer’s Drug Discovery Foundation, New York, N.Y.

“I stayed up last night and read your entire book of essays.   It is beautifully written, full of information, so clear, so personal and moving.  I could not sleep after I read it, I was so disturbed and stirred by the deep love that comes through your story, and by your loss.”

E.N., Connecticut


The book “The Alzheimer’s Diary” is amazing and its contents mirror my own experience! I also found it interesting that both the author Joan Sutton and I are actively involved in Alzheimer’s and Dementia research in seeking a prevention and/or cure of this horrendous disease and I sincerely hope that these efforts will find success in the foreseeable future!

D.R. Montreal

“ It was about 10:00 before I read the first chapter of “The Alzheimer’s Diary”. I had to force myself to turn out the light at page fifty. “

P.R. New York

“I feel like Joan Sutton has moved into my mind and reads my thoughts, questions, frustrations and understands my daily struggles and failures. She has put into words so beautifully expressed the meaning of this ” long good-bye”. She is brutally honest about AD and the cost on the patient and the caregivers, but her compassion and grace are evident throughout. “

N.C. Atlanta

“I am just closing the covers of the exquisitely written reflection on your journey with Alzheimer’s.  You have given both the Alzheimer’s world and the ADDF an extraordinary gift.  You are true to the cause.  You acknowledge the dark side without dwelling on it.  Guided by love, you capture the true meaning of care giving.

I thank you for giving voice to the psychological and emotional aspects of the Alzheimer’s journey.  No other writer captures it for me the way you do.”

M.R.T. Atlanta

“This is one of the most beautiful books I have ever read.  It is obviously sad when discussing this dreadful disease – a disease which at this point has no hope for remission or recovery.  But it is also a reminder of what one’s marriage vows mean – “through sickness and in health” and it follows the journey of two people deeply in love and robbed of those final years together.  And yet the author never feels sorry for herself and chooses her path of caring and devotes herself to the love of her life.  Just as “Tuesdays with Morrie” did not have to be read because of Lou Gehrig’s disease, The Alzheimer’s Diary does not have to be read simply because one is associated with this disease.  It is a reminder of how precious life is; how fragile life is and how we must treasure every moment with those we love.  I have bought several books to give as gifts to friends.  It is a little treasure – to be treasured.  My admiration for the author knows no bounds.”

 V.L.P., Montreal


“I got “The Alzheimer’s Diary” yesterday, and spend the day with it.  So much I did not know, thank you for sharing so freely.  “Endless Love” sums it all up. “Lucky, lucky you”. I feel enriched to-day.”

R.B. British Columbia

“No words truly can express the admiration I hold for you. Your book is amazing. You are the most courageous and honest person I know. You’ve really bared it all – so eloquently – and so generously.”

J.A. Stony brook, N.Y.

“I think your book is spot on and marvelous. I sat down and devoured it in one fast, page-turning read.  You’ve written a very important, timely book, one I am going to order and send selectively to too many women I know who are having this

sad predicament and need help. Thank you for sharing all with me and thousands of others. “

S.M. New York, N.Y.