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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. 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.
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- Jan's Story: Love Lost to the Long Goodbye of Alzheimer's.
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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. 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. It seemed strange that the first Stage of Alzheimer's is about showing no obvious symptoms.
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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.
Jan's Story : Love Lost to the Long Goodbye of Alzheimer's
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.
It happened on a balmy Tokyo summer weekend of 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. 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.
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. From what you say, she has Early Onset Alzheimer's Disease, the doctor said. There will be good days and bad days. 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.
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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. What medications will work? No way of predicting, no idea how effective. They don't cure, they don't even stop it.
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