Jan's Story (2 page)

“In Alzheimer's Disease, as in other types of dementia, increasing numbers of nerve cells deteriorate and die. A healthy adult brain has 100 billion nerve cells, or neurons, with long branching extensions connected at 100 trillion points … called synapses …

“Different strengths and patterns of signals move constantly through the brain's circuits, creating the cellular basis of memories, thoughts and skills.

“In Alzheimer's Disease, information transfer at the synapses begins to fail, the number of synapses declines and eventually cells die.

“Brains with Alzheimer's Disease show dramatic shrinkage from cell loss and widespread debris from dead and dying neurons.”

Alzheimer's Association
2009 Alzheimer's Disease Facts and Figures
“More about Alzheimer's Disease”
Page Seven

Percentage Changes in Selected Causes of Death 2000 and 2006

Heart Disease           Percentage change      - 11.5

Breast Cancer           Percentage change       - 2.6

Prostate Cancer        Percentage change       - 8.7

Stroke                        Percentage change    - 18.2

Alzheimer's Disease   Percentage change   + 46.1

SOURCE: Alzheimer's Association, 2010 - Alzheimer's Disease Facts and Figures

I never intended to write this book. I saved my notes and my “Jan Updates” and the e-mails people sent me so I could read and remember how Jan was on this day or that.

It was also my way of measuring how I was losing her. And with these notes, I could forever go back and keep alive, in my memory, the shared moments she has lost.

You will find in this book a wonderful, loving and accomplished woman … My Jan.

I hope you will understand why my journey could not end with Alzheimer's taking her away. And if you understand that, you will know why I came to write this. For those caught in this never-ending twilight, perhaps there will be guidance here, if only in knowing you are not alone.

I now entrust this chronicle to you. You will read the choices I made driven by every human's strongest needs … love and survival.

Some will take heart, some will condemn. This is up to you.

I offer only this: I believe that by sharing this journey, and by living beyond Jan's battle with Early Onset Alzheimer's Disease, I honor her.

My Jan.

“Every man's memory is his private literature.”
~Aldous Huxley

May I tell you the story of how I never proposed to Jan?

No getting down on bended knee, no diamond ring in a box—because I was so broke after a divorce that I couldn't afford a ring.

No Jan sitting in some fancy restaurant, choking up, blurting out a joyful “Yes.” We had been friends for a while because she worked at the CBS TV affiliate in Seattle and I would travel there for stories, often working out of their newsroom.

One evening … the first time she ever invited me to her tiny one-bedroom apartment overlooking Lake Washington … we sat and talked. It was never more than that … sorry … no scenes that censors would take out of the movie version.

It was just that, somehow, we knew - both of us - that we would be together from then on, HAD to be together.

I gently kissed her goodnight and walked away and felt as if I had been in an earthquake. I was shaken and elated, scared, but also ecstatic with the sense of being alive … I knew my life had changed in brilliant ways.

We were married in San Francisco on Valentine's Day in 1985, and then lived here and there across the globe … San Francisco, Tokyo, Moscow, London and back to Tokyo and Beijing.

My job as a journalist for CBS News provided Jan and me with the ability to see and experience the world. Much of it was wonderful, some of it still gives me nightmares.

In Sarajevo one day, a mortar round hit near where the crew and I were standing outside by our armored car. Two people were killed and a piece of shrapnel buried itself in our armored car inches away from where I was standing. We went there to do a job … we reported on the old women and children killed and we dodged the same sniper fire.

In the aftermath of the Rwanda genocide, I was sent to cover the thousands who fled to a volcanic plain in what is now the Democratic Republic of Congo. Soon thereafter, a cholera epidemic broke out and people died for lack of a gallon of water and some salt. How many bodies do you see stacked up near mass graves that are being dug by bulldozers before you lose count and forget? I did a story at an orphanage where we knew the littlest and sickest babies would be dead in a few hours before the story even aired back in the US.

I did it and I coped.

But the week when I had to fly from Tokyo to Seattle by myself and arrange for Jan to move into an assisted living facility, a place I was told she should probably never leave … that was when I learned how a man can fall to the floor because he is weeping so hard.

I had already lost so much of her. But this was arranging for her move to America while I remained in Asia. This was the physical reality of what Alzheimer's had taken from her mind and from me.

Here is part of the note I sent out that weekend to friends explaining my decision. It captures the part I hated most. I was her husband, her lover and her best friend, and I felt that I was failing her.

I am now being dragged down in ways which will start affecting my health and well being, if it hasn't already. This is not unusual for caregivers, and studies show that being an Alzheimer's caregiver to a loved one can shorten your life rather dramatically.

I am just barely smart enough that – when it is pointed out – I can and do see what is happening to me, such as my deepening level of exhaustion or the effects of living on a never-ending emotional roller coaster. I am reliably informed that if I do not make this change, and soon, this will not end well for me. And while my welfare is secondary because, in this battle, we must all put Jan first, there is logic to knowing that if I falter and fail, she will suffer for it.

I once told friends that I would trade my soul for Jan to be healed, and they shushed me … worried that the devil's demon Mephistopheles who bested Dr. Faustus might hear.

If he is listening, the offer still stands.

     
No impairment (normal function)

     
Unimpaired individuals experience no memory problems and none are evident to a health care professional during a medical interview. (Seven Stages of Alzheimer's Disease from
www.alz.org
, the Alzheimer's Association)

It seemed strange that the first Stage of Alzheimer's is about showing no obvious symptoms. The answer lies within the disease, an answer that offers the additional terror that Alzheimer's is already at work before a person knows it or before an expert like a doctor can tell.

This is how it was with Jan. Then as time went on and I thought back about our life together, the clues were there, but only in hindsight. Alzheimer's has immense patience as it creeps. It oozes with such stealth that some researchers now believe it starts twenty or thirty years before the symptoms are obvious enough for diagnosis. It begins in the cradle of everything that is us, in a healthy brain.

Jan was perfectly healthy. We had physicals every year, and she always did better than I. She was from a family that considered living past ninety as normal. She exercised her brain as a marvelous writer, far better than I. She read voraciously, everything from the morning paper to magazines on design, art, travel, and antiques. She was always well dressed with her hair beautifully styled. She traveled easily and occasionally repeated herself. It was easy not to see if you started out not wanting to see.

Jan was always younger looking than her years, always upbeat. She could chat with anyone and they would feel better for it. She had a strong and optimistic personality.

One can hide a lot behind optimism.

To the Looking-Glass world it was Alice that said
“I've a scepter in hand, I've a crown on my head.
Let the Looking-Glass creatures, whatever they be
Come dine with the Red Queen, the White Queen and Me!”
~Lewis Carroll/From Chapter IX of “Through the Looking Glass”

It happened on a balmy Tokyo summer weekend of 2005. I had to leave our Tokyo apartment after breakfast on a Saturday morning for a story on robots. Jan was up with me, making us omelets and coffee as we chatted over the morning papers.

When I came home that afternoon, Jan had walked through the Looking Glass, disappearing into the world of Early Onset Alzheimer's Disease. She stayed there for three days.

Mostly I remember her eyes, unusually wide open and intense, staring hard, and directly at me, and yet seemingly without comprehension. At one point I thought she was having a stroke so I had her raise and lower her arms. She seemed physically fine.

During those three days she heard voices in our apartment telling her that people were coming to dinner and other voices at the grocery store telling her what to buy. She made sentences with all the correct words, but they were out of order. (Try it sometime - it is remarkably difficult.)

She couldn't remember people's names so she described them by their appearance, such as “that skinny man you work with.”

Despite my trying to dissuade her that no company was coming, she made dinner for three people one night, carefully putting food on three plates.

At bedtime, she dressed in layers of street clothes, not her normal silk pajamas.

When a spam advertising message popped up on the computer as an “alert,” she found pen and paper and wrote it down word for word, then told me it was a warning of danger.

The third night, she went to make hamburgers. She put the hamburgers into a deep pot normally used to boil water for pasta, then used a frying pan as a lid, turned the burner to maximum heat and walked into the bedroom saying she was tired and was going to take a nap. I jumped up and turned off the stove.

Because we lived in Tokyo at the time, we were in a different time zone than the United States. It was 4 a.m. in Tokyo when I finally reached a neurologist in San Francisco and described the symptoms.

“From what you say, she has Early Onset Alzheimer's Disease,” the doctor said. “There will be good days and bad days.”

I objected. How could the doctor be so sure, and over the phone at that?

“She has Alzheimer's Disease,” the doctor said with flatvoiced finality.

On the morning of day four, Jan was fine, seemingly back to normal, with no memory of what had happened. To her, those days simply didn't exist in her mind. Maybe it was better this way. Some people slide slowly into this disease, faltering at work or at home, leaving friends and loved ones to raise eyebrows or ask questions.

For some unknown reason, and as I learned more about this disease, I heard the word “unknown” a lot. I had three days of seeing into the future; what Jan would be like someday in the months or years ahead, and no one could tell me how soon or how long. That is the hardest unknown.

The next steps were familiar ones … the visit to the San Francisco neurologist and the tests that couldn't tell us anything with certainty. They strapped electrodes to her head and took readings. Everything came back normal, which meant nothing.

Somewhere, early on, a doctor told me: “We can't really know for sure if it is Alzheimer's until she is dead and we do an autopsy on the brain.”

Dead? When did dead come in?

Now I felt panic. How soon could this kill her? Another unknown.

How fast is the progression? Depends.

What medications will work? No way of predicting, no idea how effective. They don't cure, they don't even stop it. They are like a man on the railroad track trying to hold back a slow moving locomotive with all his strength … but the train edges forward, always forward.

The Disease progresses no matter how hard you push back.

If I had to paint a picture of my life in those first weeks and months, it would look like something from kindergarten. I would take all the beautiful colors of Jan; our experiences and remembrances, our plans and dreams, our intense love, the sound of her voice, how she felt in my arms, how in the middle of the night when she was asleep I could snuggle against her back and she would readjust to fold tight against me and then I could wrap my arms around her.

And I would twist the brush in vicious strokes, back and forth, until all those beautiful colors were a mix of bright and dark that no longer makes sense.

Together we built a life, made friends, hunted for treasures in antique stores, traveled and loved the new experiences. Our lives made sense. And then, with the coming of The Disease, all of that was taken away and in its place was unpredictability, and loss.

I was not alone. One doctor told me that Early Onset Alzheimer's can strike people as young as thirty.

And, as the incidence of over-all Alzheimer's explodes in the United States, so will the number of Early Onset cases. At the moment, about 5.3 million Americans have Alzheimer's. Of those, an estimated 10%, or half a million, suffer Early Onset or other forms of dementia, which means those diagnosed with Alzheimer's who are under sixty-five.

And projections from the Alzheimer's Association are that by 2050 the number of those with Alzheimer's Disease could triple to 16 million.

But of the millions, there was only one person I cared about at this moment … Jan

Can I describe her for you? I am not sure I can get it all.

Only five foot two, I nicknamed her The Shortblonde. I would swear she was born with a smile, and never stopped laughing. By the time I met her she was one of the prime news anchors at KIRO-TV, a Seattle TV station. True to her spunky nature, she always had a bountiful supply of grit and exuberance, and that helped her success. But she made it the hard way by starting as a part time writer and working her way up. Before too long, she moved up to being a producer, then a reporter, and finally an anchorwoman.

She brought a spirit of optimism to our lives, one that helped her accept her role as wife and the added job of stepmother. It was a challenge and yet, she made it tolerable for me and fun for my two daughters.

When she first met them they were two and seven. To her, when the girls were with us, we were the Dad and Jan family. She made it seem that way naturally. She plotted wonderful vacations for us all—once putting us on a one-year savings plan to pay for an African safari.

She helped me survive the girls' teenage years because she had been a teenage girl. They could be moody around me, and I would be sympathetic. Jan would know better, and tell them they were perfectly capable of creating their own good moods. And as for helping two teenagers with critical knowledge … clothes, makeup, boys … she handled easily what I could not have handled at all.

And, always, she made it seem easy to them. The occasional anger and frustration that comes with raising kids was something she shared with me, and I with her, and not with the girls. It would have made them feel bad, and making people feel terrible was not something she would do.

She dressed beautifully and tried hard to make me do the same. She loved picking out my clothes, especially suits and shirts and lovely ties. It never bothered her that I hated spending money on myself. She spent it on me with a mischievous smile, and a nearby clerk would happily process the credit card.

No matter where we lived, and we moved every few years, she draped our apartments with fabrics of warm colors and surrounded us with the antiques we found together, or silly mementos of trips taken and places lived.

To her, life was bright and good. Her favorite colors—rich, full reds and golds and soft warm pinks.

Jan was fifty-five-years old when she was diagnosed that night at 4 a.m. Tokyo time. We had been married for twenty years.

The doctors call it Early Onset Alzheimer's Disease. Perhaps it is good to have a name for a disease that will rob and cheat and steal and slowly suck the person you love away from you.

There is a line from the movie
An Affair to Remember
that goes: “Winter must be cold for those with no warm memories.”

Soon, for Jan, there will no longer be the memories of us, the warmth of our love.

Soon, for Jan, every day will be a cold and lonely winter.