Archive for the 'My Father’s Eyes' Category

Journey’s End

The long journey that began a year and a half ago ended suddenly this morning.

The Swedish ringtone sounded four times after I dialed the number I had dialed the same time every morning for several years as well as every weekend afternoon, the number I knew would suddenly become meaningless any time as my mother’s disease progressed.

A strange voice answered and in one instant I was orphaned at age fifty-eight, never having said a final good bye. My last words had been “get a good night’s sleep and I’ll call you when I wake up in the morning”.

Hers had been “I am content, take care of yourself”. She was ready, even if I was not.

I have lost count of how many deaths I have attended as a physician, but it is always with an eery swiftness that the moment passes, no matter how long the wait has been.

Instantly the moment is gone, the chance to say the words we wanted to have said. Instantly the feeling of loss overwhelms us as we are hurled from one way of existing to another, just like our loved one is whisked away from our presence.

Hearing a young Hospice nurse struggle to find the right words to tell me what must have happened before she arrived for her scheduled visit, I realized what had happened with the speed of my imagination as her words continued to form in slow motion. Through the receiver, across three thousand miles of frigid ocean and across a time difference of half a day I gathered up the pieces of my mother’s last hours on this earth.

Somehow, I knew it would end like this. I knew it the day my father died and I was the one who walked across my home town to tell her, confined to her hospital room across the river. I knew it every time I said good bye on the telephone, that one day the phone would ring and ring, she would not answer and the familiar number wouldn’t be hers anymore.

I just didn’t know it would be today.

All is Well; Over and Out

You were never a chatterbox, Dad. You always chose your words carefully and didn’t say anything you didn’t mean. You were sometimes extremely brief in your communications, perhaps to balance Mother’s tendency to talk much more than you did.

Especially on the telephone, you always were a master of brevity. Calling home from payphones while traveling around Europe, or from the U.S. back when calling overseas was rare and expensive, all I’d get out of you was sometimes: “All is well; over and out”. Those few words really said everything I needed to hear, though.

I started out emulating your style of communication, but have had to learn to say more on the telephone over the years. These days I sometimes even wear a Bluetooth earpiece and talk with my wife while driving or walking through stores shopping if we can’t be together.

Sitting with you, watching the sunset at camp or spending time together during the Holidays, there were always long stretches of silence between us. I always felt the connection, even without any exchange of words. I felt it also at the very end of our time together here on Earth.

Sitting by your bedside during your last few days and nights, I said all those things to you that I had not said often enough before. Unable to answer me because of your end-stage Alzheimer’s disease, you looked at me and the peace in your eyes conveyed to me all I needed to hear back: “All is well”.

Roger that, Dad: All is well. Rest in Peace. Over and out.

Finding the Way

As a child, dozing in the back seat during long drives back to my Grandmother’s house in our old home town, I would look out the car window and ask:

“How can you find your way?”

My mother always answered, “We just do”.

Returning to the U.S. ten years ago, after a summer sojourn at camp and a train trip to the Arctic Circle, my wife and I needed a ride to the train stop on the outskirts of town. The express trains bypass the small city on the far outskirts of Stockholm, and travelers have to make it up on a platform on a large railroad bridge, visible in the distance from my parents’ apartment.

My father drove and my mother co-piloted their Volvo. He seemed to have trouble finding the way, so my mother reminded him that they had been there just recently. We were right near the newest shopping center. He eventually got us to the train stop, not quite recognizing any of the landmarks along the way.

Many years before, my mother had asked me to promise that if anything happened to either one of them, I wouldn’t put them in a nursing home. I answered her with a question: How can we predict now what will be the right thing to do in an unanticipated situation years down the road? She accepted my unwillingness to predict the future.

As it became obvious, years later, that my father had dementia, my mother adapted to their new circumstances. She learned how to care for him, reluctantly also letting strangers into their home to assist her. When his disease advanced, she found her way to acceptance of a nursing home placement for him.

Every day my mother went to visit my father at the nursing home. At first she walked, resorting to riding the bus only in bad weather. Over the course of his years on the dementia ward, she started using a walker, but still climbed on board the noon bus every day to spend the afternoon with my father.

She always found a way to see him, sometimes took a taxi, sometimes even got a lift home from the staff when no taxis were available. The nurses and aids became part of our extended family, caring for my father as if he were their kin.

My mother has always praised the nursing home and the care they provide for my father. She knew in her heart that she had done the right thing by making the choice she said she would never make.

My father never complained. He seemed puzzled why my mother wouldn’t stay for supper and overnight, but he delighted in her arrival every day. He was never restless, never frustrated. As the years passed, he stopped speaking and gradually stopped moving his limbs. He stopped feeding himself and soon also stopped swallowing even pureed foods. Soon, even liquids wouldn’t go down.

Searching online for flights to Stockholm, I found my way back in time to sit by his side, hour after precious hour. As I listen to his respirations, the physician in me registers the significance of their waxing and waning, the son hears his dad still breathing, still with him.

My father was never very demonstrative with affection, although I never doubted his love for me. I, in turn, didn’t tell him often enough that I loved him. Last night, as the hours passed, I held him and told him again and again what a good father he is, how proud I am to be his son, and how much I love him. His blue eyes softened and kept looking right at me with an expression of peace and contentment.

You are sleeping peacefully now, Dad, and I have told you that everything is okay. I have told you that you can hold on or let go, either way. I have told you that I will always love you.

At my age, I am still learning things from you. I am learning patience and acceptance, seeing how you handled your fate.

Whatever happens to me next and down the road, Dad, I hope that just like you and Mom, somehow, I will always find the way. 

The Long Journey

I woke up somewhere over England. My mouth felt like I had walked through a desert sand storm. Everyone else in the cabin was asleep and the stewardesses were not within my eyesight. I waited silently for them to start the breakfast service. When, after an eternity, they did, I asked for a glass of Seltzer water, downed it and asked for another. I had a third, and orange juice and coffee within short order.

The Stockholm airport, the rental car place, the Volvo wagon and the highway hadn’t changed much. My father, now bed-bound and nonverbal, had.

As I entered his room, so familiar after three and a half years in the dementia unit, I saw a face that was radically changed from my last visit. No longer able to eat, barely taking sips of fluids for the past week, the father I greeted was even thinner than I had understood from my mother’s description.

His eyes locked on to mine and his lips moved in the way I was told they always move, but they made the movement you would make if you say my name in Swedish.

The nurse affectionately stroked his head, combed his long, silver hair and offered him Seltzer water from a heavily soaked oral sponge swab. Again and again, his mouth closed eagerly around the swab and he sucked hard on it and gulped down the still slightly fizzy liquid.

For half an hour, my father never took his eyes off me. Over and over his lips formed my name. I told him I was well, explained why my wife wasn’t able to make it this time, told him about his grandchildren and great-grandchildren.

Finally, he fell asleep with my hand on his. Every once in a while he woke up, looked straight into my eyes with his sunken-in, clear blue ones. He looked restless. I told him I loved him and told him what I had heard about my mother’s condition. It wasn’t until I said I was doing well and that I was happy that he finally seemed to relax.

I spent a few hours with my father before driving over to the hospital to see my mother. I drove through the town where I was born, where I lived for the first six years of my life and always returned to visit my parents after they retired in 1986. They chose to move back ‘home’ to where they spent their youth and where all their family still lives.

I happened to pass the pink stucco apartment building that housed my preschool; it is now a funeral parlor. I still remember walking across town to preschool there.

At the hospital, my mother, too, looked little. We kissed and hugged. She asked about my father, cried and thanked me for stopping there first.

The first leg of what seems to hold the promise of being a very long journey for the three of us is over.

My Father’s Eyes – The Photographs

I only have two photographs of my father and me where we are both looking straight enough into the camera to study our eyes.

In the first one he is about 33 and I am about 3 years old. He is sitting down and I am standing next to him. The picture is in a small album he once put together for my great-grandfather. After my great-grandfather passed away, I got the small photo album with hand-written captions. The one under the picture of my father and me reads (in Swedish): “What’s mommy doing with the camera?” In this picture, he is a thin, slightly balding big-eared young man with a point collar shirt and a hand knitted sweater. I am a toe head with a similar outfit, but with chubbier cheeks. He looks a little sad or perhaps just plain tired, and I look calm and well fed.

This picture reminds me of Livingston Taylor‘s words:

“My father’s eyes
My father’s hands
Oh daddy quickly pick me up
When will I be a man
When will I live long enough
To make somebody fly?
When will the mirror show me
My father’s eyes?”

The second picture of my father and me was taken shortly after he moved into the dementia ward where I visited him last month. He is seated in the center, thin again after years of being overweight, and my mother and I are standing, scooching slightly, behind him on either side. My wife took the picture when my father was 83 and I 53. In this picture he again looks a little sad or perhaps just tired. I remember that he wasn’t quite sure what this was all about. When my mother told him she was leaving at the end of each afternoon visit, he would try to get up to follow her, or sometimes offer to drive her home.

My own eyes look a little bit tired, too, maybe from jet lag, and perhaps also in response to my father’s decline.

These two photographs, taken fifty years apart, frame the story of two men who each left their home to make themselves a new life somewhere else; my father left the farm and his birthright to find work in a factory, then earned an engineering degree in night school. I went to medical school and left Sweden to make a new life in America. I never then, at age 28, reflected on what it might mean to have children and grandchildren on one continent and parents on another.

My visit to Sweden last month was a whirlwind trip. I only spent three days there this time. Each day I spent much of the afternoon with my father at the nursing home.

Each visit passed quickly with breaks for obligatory coffee and cookies, which he eagerly devoured with minimal help.

His room is spacious with a peaceful view of the grassy yard behind the building, the bed is a hospital-type unit and there is a Hoyer lift. The armchairs and table are from camp, and he has his own TV. Tall trees shade the front of the three-story building, and there is a balcony off the homey kitchen. Next to the kitchen is a dining room with seats for all seven residents. Beyond the dining room is the living room, dominated by a large color TV. The exit doors have electronic combination locks.

The staff is wonderful; hugs are shared freely, hair cuts and manicures are provided, and the staff even picks up personal items for residents downtown. The care is subsidized and fees are based on income. As my father has a good pension, his monthly fee is somewhere around $1400.

His dementia was evident many years ago, and his decline has worn on my mother. She finally has peace in her heart with his living in a dementia unit, and she visits him five or six days a week. I talk to her on the phone every week, but I see my father usually only once a year. Even before he developed his dementia, he never talked on the phone; he would answer and then get my mother on the line.

I read somewhere that we lose our parents little by little over many years. The daddy that picked me up the way Livingston Taylor describes has been gone a very long time, the father I discussed politics with has been gone for fifteen years, and the father who beat me at cards has been gone for a decade.

Like my hometown in Sweden, I can still visit my father, and the memories well up inside of me, but his dementia is like the ravage of time on the streets where I played as a child. Much of him is simply gone; it is only because I love him and remember him that I still find all of him there. A stranger would not see in him what I see when I look at my father.

I don’t know if he’ll be there when I visit Sweden next. I know I’ll never hear him speak again. I’ll never walk down to the lake with him again, and he’ll ever beat me at cards again, but when I look into my father’s eyes I see my past and maybe also my future:

Out of six siblings born in the 1920’s and 30’s, all are still alive, but the three oldest have been diagnosed with dementia. Livingston Taylor’s words echo in my mind:

“When will the mirror show me
My father’s eyes?”


Osler said “Listen to your patient, he is telling you the diagnosis”. Duvefelt says “Listen to your patient, he is telling you what kind of doctor he needs you to be”.

BOOKS BY HANS DUVEFELT, MD

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