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.
Walking Into Oblivion: Stage One
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.
1
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”
First Days
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 l
ives 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.
TIMELINE
September, 2005
Jan's e-mail to a friend about her diagnosis
Ellen! Andre!
Everything fine here, with the surprise exception I never expected; turns out that recently, after a few days of my being somewhat “wacky” we took me off for a check up and here's the good/bad news … I've been diagnosed with (Early Onset) Alzheimer's. Don't know how or why … doesn't run in my family, etc., so I can't figure this out … however, the really GOOD news is that we live in the age of miracles … instead of being doomed to being shut in the attic, I am blessed with a bushel basket of pills which I now RELIGIOUSLY take … morning and evening … and as far as I can tell (well, actually it's BARRY who is my weather vane) it appears that the triumph of medicine is WORKING!
I know it SOUNDS GHASTLY … but as Barry will tell you, I am now my usual self thanks to the miracle of meds … and long may they reign!
So in the “Don't Cry for Me Argentina” mode … this does entail my carrying around the assorted pills, but hey! Consider the alternatives! I'm all for pills … morning and evening … the neurologist is pretty clear on what I can and can't do, which principally means I will never, ever miss a pill … but that's not such a big deal … and as it turns out there are all kinds of researchers out there trying to develop even BETTER meds for all of us “boomers” … talk about the world's largest captive audience!
Love, Jan
2
“The leaves of memory seemed to make
A mournful rustling in the dark.”
~Henry Wadsworth Longfellow
About Jan
Every couple's life is their own private novel. It is a little personal history added day by day, experiences that can be remembered later with a word or even a look. Someone else talks about visiting some place … and with a glance at each other you can remember being there, the two of you.
Our private novel was about happiness and love. As simple as that.
She had favorite stories.
“Do you know when my dad was born?” she would ask friends who clearly did not. “He was born on January 14th. And one of my brothers was born on January 14th. And you know who else? Barry was born on January 14th!”
It was Capricorn destiny, proof that we were fated to be.
Her favorite story was how we first met, in the newsroom at the Seattle TV station where she was working as a reporter and anchor. I was there covering a US Senate race for the CBS Evening News. This was before the days of laptop computers. I had commandeered her desk and typewriter and was frantically working on a script against a tight deadline. Jan came back into the newsroom from an assignment.
“I walked in and saw this man sitting at my desk,” Jan would say. “I walked up and told him, ‘this is my desk, and I need it because I have to write my story.’”
Then came the part she loved the most. “He looked up at me, and he RIPPED his paper out of the typewriter and stomped away.”
When she can remember, it always makes her laugh. I didn't laugh at the time it happened and not for a while afterwards. But in time it became one of my favorite stories about us. It reminded me of how she was pretty and spunky and totally unimpressed by me, the big-time network news correspondent who was a touch too impressed with himself.
I blessed the day we were married and look at the wedding picture of our blended futures … Jan and me and my two daughters, Emily (7) and Julie (2), from my first marriage. When I look at the pictures from that night, I see in her face a radiated joy, a kind of total, sheer happiness that I never believed I could give a woman, and yet it seemed natural. My smile is real and, if you look closely, maybe a bit unbelieving that someone this amazing was about to become my wife. Until her, I had never believed a man could be that happy, and I definitely never thought it would be me. But she made it so.
It was going to be a struggle combining the girls, Jan, and me into one family, but we thought it was exciting. We both knew it would be complicated, and we both had no doubts that in the end it would be fine.
Because we had each other. That is what fine is all about.
There were plenty of real life concerns in our early days. It was 1985, and my bank account was pretty much empty from my divorce and the legal fees. At the time, I was based in the CBS News Bureau in San Francisco. Our love triggered her life-changing moment.
She was in Seattle and quit her job. We needed to be together. I drove up in my second-hand Oldsmobile, rented a U-Haul trailer, and we packed her small apartment and moved her to where I was, and to where we would make our lives one.
We managed to scrape some money together and buy a tiny house in San Francisco in a neighborhood called Eureka Valley which was, as quirky San Francisco goes, not in a valley at all, but on a hill. And not just a hill, but a steep, steep hill up from the Castro District of San Francisco.
Our house was one of several ticky-tacky row houses built in the 1950s for policemen or teachers as affordable housing in the city. We loved it because it was a part of the city, perfectly plain and a touch ugly on the outside since it was devoid of any architectural charm. It was a box with windows in a series of houses that looked like boxes all running together. The outside paint job stayed with the theme of very ordinary … beige. I remember thinking that even the roof was boring … perfectly flat.
I loved it because I could almost afford it, and Jan loved it because it was ours.
The main floor was a living and dining room and a true 1950s kitchen. And the best part was that it came with a small corner fireplace in the living room. Upstairs had the only bathroom and three amazingly compact bedrooms. Each floor, divided up as it was into different rooms, had just slightly more total space than our two-car garage on the street level.
It had been a rental house when we bought it, so it was wanting for love and care. Every wall needed paint. But we didn't mind since all the work was just another part of making it ours.
From the first floor at night, as the fog slipped over the western hills and started toward the city, we could look out our living room windows and watch the first strands drifting down our street. Then came the real gusts and finally, we would all but lose the houses across the street.
Jan's Story Page 2