August 10/2000
I will admit this summer has been one of the worst I can remember. Apart from the dubious weather, I am feeling tired. Things are out of order; I have lost my centre. I haven't been eating or exercising properly and so feel even worse. I get crabby and then I yell at the animals. And then I feel REALLY bad.

I miss dad. I miss knowing that he is there. I miss knowing that I was important to someone, I miss knowing I made a difference to someone. When I am out walking my dog Oreo in the park near the nursing home where dad lived, I remember the countless times I wheeled him around the park and the neighbourhood on sunny summer days and then taking him back for his supper. I remember thinking that he was so frail, how many more summers would we have and then feeling that somehow he would always be here. When I go grocery shopping I stop in front of the foods I used to buy dad. Thinking, always thinking. But grateful that I no longer have to see my father lonely, confused, frightened and so utterly isolated and unknowing within his mind and body.

I have been going through more of his papers etc. and found a letter he wrote to me after the death of my mother. He was telling me that he was trying not to sink into despair and trying not to allow the loneliness for my mother to destroy his few remaining years. My dad was not a very poetic person but one sentence struck me. He wrote: "Everyone is as young as their faith and as old as their doubts and despair. Life must go on for both of us." I am keeping this near to my heart.

I am wishing that we talked about things like doubt and despair and missing the ones we loved and lost. I avoided talking about my mother with dad because he would always start crying. To me that meant avoiding pain to save my dad. Now I think I understand that our parents need to talk about the loved ones they have lost - a spouse or a child. It helps them heal. I let dad suffer and heal by himself after mum died; I did the same thing to me. We could have helped each other and gotten to know each other better.

I know dad is right and I feel that I am getting on with my life but at this very moment as I write I am pretty unhappy. Tears well up from time to time but always it seems at the most inappropriate moments so I have to push them back and move on.

Oreo my dog continues to be the light of my life. She makes me laugh and astounds me with her cleverness in the things she does. She makes me go out for walks even when I don't seem to have the energy; I invariably feel better for it.

August 15/2000
A colleague called me recently to express her condolences. We talked about the end of life and I described how difficult it was for me in the last few hours of dad's life to find information so I could prepare myself for the end. She told me about a book she thought was excellent called How We Die by Dr. Sherwin Nuland. I went to the library and put my name down for it. I almost dread the day I get the call that the book is in because I know how hard it will be for me to read it. But I need to know what he says about death both for me and for others who will come to my web site for information and support.

August 22/2000
I have vowed to take myself in hand and start eating properly and working out regularly. I belong to a small health club near me and went to a step class, then a yoga class on Sunday morning. The yoga instructor came up to me just after the class began and asked if I had a sore back. I mentioned that I have a congenital problem for which I do exercises and take physio as necessary (neither of which I have done for months). She told me my whole body was tense, particularly mu lower back. I wasn't surprised. I have taken a look at pictures taken of me in the last few years and most of them show my face full of tension. Even I could see it. I know how powerful stress is, how much damage it can do to one's body. I've had it for a long time and I am making a concentrated effort to do better. To take some time each day and physically relax. Maybe I'll start meditating again.

I received this by email today from several sources. It brought tears but also smiles of remembrance. I truly understand the gift of a smile from a loved one with dementia and the moments of profound tenderness that can break one's heart. I will be forever grateful I was given these moments even if I cry over them for years to come.

August 22, 2000 Opinion section of the NY Times
http://ea.nytimes.com/cgi-bin/email>

Losing My Father, One Day at a Time
By JONATHAN KOZOL

President Clinton recently announced a $50 million research program to advance the early diagnosis and investigate the possible prevention of Alzheimer's, a disease that now afflicts more than four million people in our nation. One of them is my father, and, like others who have seen their parents' mental faculties assaulted by this illness, I was grateful for the president's decision, wishing only that my father still were young enough to benefit.

In his case, there is a poignant irony in this affliction. My father is a neurologist, a specialist in diagnosing cerebral impairment. For nearly 50 years, he taught neurology at Harvard Medical School.

He diagnosed himself to a remarkable degree, at least in the initial stage. Even after moving to a nursing home four years ago, he still had flashes of apparent recognition of the nature of his illness. One night in 1996, when I questioned him about the selectivity of his confusions, he spoke of the degeneration of brain tissue and alluded to the function of a "neuron" and tried to explain why recent memories were inaccessible while others -- memories of older doctors he had known at Harvard in the 1930's, for example -- were as fresh and vivid as if these were people he'd just seen.

When he couldn't find a word he needed to develop an idea, he didn't seem disturbed, but "interested," like a scientist, to recognize a symptom of the very chemistry he was describing. I could imagine him in 1939 leading the interns on grand rounds at Boston City Hospital, stopping at one bed, then another, to discuss each case, and then arriving at a patient who presented the most perfect case of all to illustrate a point that he was making, even though the patient in this instance was himself.

The lessons on brain chemistry came to an end three years ago. Today, at 94, my father thinks it is 1912. He speaks about his grade-school playmates as if I know them. "Have you seen Ma?" he'll ask. He always called my mother by her name but called his mother "Ma." I know that, at these moments, he believes I am his brother.

Moments of lucidity recur, but with a jagged and perplexing unpredictability. When I came into the nursing home one night last winter, he did not appear to know at first exactly who I was, but then surprised me when a doctor came into the room. "I don't think I've introduced you to my son," he said in a congenial voice, as if the two of us were at the Harvard Club for lunch and one of his physician friends had stopped by at our table.

Another night, a woman visiting a patient suddenly collapsed. My father got down on the floor and took her hand and pressed his fingers to her wrist to find her pulse, then moved his fingers slightly in the practiced way that doctors do until he'd found exactly the right spot. Reassured, he stayed there at her side until a nurse arrived.

Earlier this year, as I was just about to leave his room, he took my arm and spoke to me in Yiddish, which I hadn't heard him speak in 40 years. I asked him, "Daddy, can you say your name in Yiddish still?" He thought for a moment, then said, "Hershel Leben" -- Harry Leo -- and then put his arms around me and began to cry.

"It's been a good trip, hasn't it?" he asked.

When I visit now, I try to take my dog because her presence makes my father utterly serene. She has known my father since she was a puppy. She runs right up to him, wagging her tail, and sits in front of him and waits to be acknowledged. If he doesn't speak to her she makes her feelings known by squealing softly. "Oh, there she is again," he'll say and reach his hand to stroke her head. I don't know why he says "again." Perhaps he actually remembers her. On the other hand, he's always been extremely good at bluffing gracefully. He hasn't lost that skill.

"So how's it been?" he'll sometimes ask when I come in. If I tell him I've been in New York, he'll say something that sounds capaciously appropriate about the reason I was there. "Did you get it all done?" he might inquire. Or, on one occasion recently, he asked: "How are they treating you down there?"

On rare occasions, he says my name. More frequently, he'll simply press my arm and hold me there in front of him and look hard in my eyes. His hand is still strong, his grasp still firm. The nurses tell me that his recognition of my face is now the only bond that still connects him to the life he lived.

I have been blessed to have these final moments with my father without suffering the grave financial worries that most children of Alzheimer's patients undergo. My father's savings were sufficient to support the cost of the superb care he receives (more than $100,000 a year) and to allow my mother, who is 96 years old, to live with dignity in her own home. Most families facing this dilemma aren't so fortunate. Medicare, the federally supported program for the elderly, cannot be used to pay for long-term care beyond a tightly stipulated period (about 100 days) and only in the aftermath of medical emergencies.

Medicaid, which is means-tested, cannot underwrite the costs of chronic care in nursing homes unless a family first exhausts its savings. A wife still capable of living independently, as in my mother's case, is not denied the right to stay within her home but must deplete all other assets and, essentially, reduce herself to indigence before her husband qualifies for government assistance. The sadness of Alzheimer's should not be compounded by the added injury of mandatory destitution.

My father's journey, as he nears its end, retains a certain tenderness and beauty. My mother, meanwhile, has the help of kindly home attendants who have come to be close friends to her and join her in the evenings as she follows news events, cheers on her favorite baseball team and celebrates a Red Sox victory with tea and biscuits before sleep.

All our parents and grandparents ought to be allowed this modicum of sweetness in their final years. Until the riddle of Alzheimer's has been solved, the rules that govern Medicare and Medicaid should be revised to cover long-term care for all who suffer from this illness without penalizing a surviving spouse by adding indigence to grief, and fear to loneliness.

Jonathan Kozol is the author, most recently, of "Ordinary Resurrections: Children in the Years of Hope."