Archive Page 209

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?”

Visions of Little People

Richard Westman was a fine-boned, soft-spoken eighty year old retired accountant, who prided himself of his sharp intellect and excellent memory. I had known him for a few years, but didn’t see him often as he was relatively healthy. Then a myocardial infarction robbed him of his physical stamina, and he started to develop heart failure. He also developed heart rhythm problems, and ended up with a pacemaker and on a blood thinner. We saw a lot of each other during the last two years of his life – or I saw more of him than he saw of me, as he suffered from advancing macular degeneration.

He was familiar enough with our office layout that a casual observer might not have noticed how visually impaired he was. He needed help managing his medication bottles, and he had long before lost his ability to read and watch television. He listened to books on tape, and he followed the news with great interest; there was nothing wrong with his mind, or so I thought.

Then one day he confided in me that he saw things – children, sometimes groups of them, playing in the yard outside his kitchen window in broad daylight. They always seemed friendly and happy, never threatening. They never spoke, never made a mess and never pulled any pranks.

At first he was unnerved by seeing them, but gradually he came to enjoy their presence. He confided in me:

“I don’t really think they are there, but I don’t know why I see them.”

“Do you want them to go away?” I asked.

“No, they just puzzle me” was his answer.

I had at first thought of offering him a trial of a mild antipsychotic, but it was clear that he didn’t need that, since the visions didn’t frighten him in any way.

We talked about the children now and then, but I soon forgot about his visions. Then one day his wife called the office and said their daughter had found something on the Internet they wanted me to read. The had figured out that Mr. Westman suffered from Charles Bonnet Syndrome, CBS.

Most of the time it isn’t a thrill when patients or their families bring in articles they have found online. We all know that more information is not the same as better information. But this time I was fascinated by what they brought to my attention, and I soon found myself digging deeper into the subject on my own:

First described in 1760 by a Swiss philosopher, who noticed that his grandfather, who was almost blind, saw birds and other figures that weren’t there, Charles Bonnet Syndrome (CBS) typically affects older people with severe vision loss. CBS often only exists for a year or two as vision deteriorates, and can involve geometric patterns or little creatures, often elf-like, usually friendly looking and often with hats. The visions are rarely threatening and they are common – at least 10% of people with worse than 20/60 vision are said to have this syndrome.

CBS is not a psychological condition. It is believed to be something similar to phantom pains, where a person even after an amputation can “feel” a missing extremity, even though they know perfectly well that it isn’t there. The visual cortex of our brains is always “filling in the blanks” when we look at something quickly or when we cannot see things quite clearly. Any type of visual impairment, such as cataracts, diabetic retinopathy or macular degeneration, can create more “blanks”, which are automatically “filled in” by the brain. Antipsychotics don’t seem to be of any help.

Some writers like to think of Charles Bonnet Syndrome as a portal to paranormal experiences or parallel universes. For me it was a portal to being more willing to see what patients and their families drag into the office after surfing around the Internet!

A Concurring Second Opinion

My senior colleague, Dr. Wilford Brown, was waiting for me at the nurse’s station yesterday with a funny look on his face.

“Oh, Esteemed Colleague” he started, cleared his throat, and continued:
“May I bother you for a second opinion and reassurance for this patient that two capsules of doxycycline is more than adequate to protect her from Lyme disease?”

I glanced at the chart he was holding in his hand. It belonged to Laura Leonard, a very ladylike woman with a tendency to worry about bad diseases.

I agreed, and we entered her exam room together.

Mrs. Leonard showed me her ankles, which were covered with small, red dots of an unmistakeable nature: Flea bites. She preferred to think of them as tick bites, because some of them had a slight red ring around them. ” I know these are not flea bites”, she stated very firmly as I kneeled down to examine her ankles.

I explained that I grew up and trained in Sweden near where Arvid Afzelius first described Erythema Chronicum Migrans in 1909, the rash that later came to be associated with Lyme disease.

“I agree with Dr. Brown”, I said. “This is a low risk situation.” He glanced at me from the corner of the room.

“Between the appearance of these spots and the two doxycycline capsules, you can be quite sure you won’t develop Lyme disease”, I said.

She thanked me profusely, then she turned to Dr. Brown and thanked him, too, with the comment: “I didn’t question your judgement or anything…”

He looked her squarely in the eyes and answered in a serious voice but with that funny little look on his face again:

“Oh, I won’t lose any sleep over it!”

I’m sure he didn’t, either.

The Dreaded Visit with Priscilla Pye

The past two weeks have been unusually hectic. My clinic schedule has been overbooked and poor Autumn, my sleep deprived nurse-and-mother-of-an-insomniac-three-year-old, seemed to be drowning in triage telephone calls.

Priscilla Pye, a longtime patient, called our clinic six times one day. It was clear that we were not meeting her needs, and yet with every call she made, our therapeutic relationship deteriorated exponentially.

It started a few weeks ago.

Priscilla Pye is normally a very bright, articulate and self-assured woman, who has made quite a name for herself in the art world. She owns two galleries, and recently started another business promoting local craftspeople to a bigger audience.

Priscilla, over the years, has been both a fan and a critic. She has often lamented the fact that I seem so much busier now than twenty years ago. She also hasn’t had much sympathy for my choice to eliminate some more complex and high-risk procedures from my clinical repertoire; when I first came to town there were fewer specialists in the nearby cities, and primary care doctors in general did more procedures than they do now.

This spring Priscilla developed back trouble and this summer she fractured her ankle. She didn’t do well physically or emotionally, ended up firing her back specialist and usually would double check with me everything her orthopedist told her about her ankle.

Her pain medication made her constipated and she started to have attacks of abdominal pain. Then her legs started to swell and she put on weight. One day two weeks ago her asthma seemed to be bothering her more than ever before, and when she called with such a constellation of serious symptoms, we gave her a 30-minute appointment.

She arrived twenty minutes after her scheduled appointment time, which in a practice that runs on time is a major problem. From my hurried history and physical exam it was clear that Priscilla needed further testing of her heart as well as lots of laboratory testing and CT scans to make sure she didn’t have malignant lymph nodes or tumors compressing the veins in her chest and abdomen. I also started her on fluid pills and stool softeners.

Priscilla’s appointment had been mid-day Friday. The way my day was going there was no way I would get her chart note dictated and the necessary forms over to the outside appointment scheduling staff before the end of the day.

Priscilla was frantic. Her symptoms didn’t justify an acute hospitalization and she didn’t seem to have much sympathy for the fact that I had fifteen more appointments that day after hers, and all of them expected my undivided attention and punctuality. She called twice that afternoon to check on the status of her referrals. Autumn could not calm her down. Pressed for time, I grabbed the telephone receiver and told her: 

“I’m working as fast as I can!”

At 5:30, with our staff gone, and more than an hour’s worth of paperwork left to do, I called the scheduling center of one of the hospitals we use. Miraculously, I was able to get all her tests scheduled for the following Monday.

I called Priscilla to tell her about all the appointments I had made for her; she seemed calm, perhaps even a bit touched that I went through this trouble for her. I warned her that I wouldn’t have any results until a day or two later.

The day after her tests she called first with a request for results, which were not in, then with a concern that she was having dizzy spells. She demanded I order a STAT MRI because she was sure she was dying from a stroke. At that point in time our clinic was like a labor room during a full moon. Autumn appropriately told her that ordering an MRI without evaluating her was bad medicine, and if she really thought she was dying and/or having a stroke, she needed to be evaluated at the hospital emergency room. Priscilla was unimpressed, and her next several calls that day were to the clinic administration.

All the tests I had ordered on Priscilla were negative. She called a few more times, lamenting to Autumn how little I must care about her. Autumn was so disturbed by the tone of these calls that she forgot to ask how the fluid pills were working.

This Friday, we had a cancellation of a 30-minute slot, so I asked Autumn to call Priscilla and offer the time slot to her. Autumn’s look made it clear what she thought of that idea. Priscilla was very nice on the phone and thanked Autumn for thinking of her.

So it came to be that my last appointment Friday was The Dreaded Visit with Priscilla Pye. I expected that her dissatisfaction with my busy schedule and my decreased appetite for medical heroics and risk-taking would get me a raking-over-the-coals, maybe get me fired from her case, or she might even have succeeded in getting me into trouble with the clinic administration. I fantasized about walking into the room and telling her that I was already doing the best I could, and if that wasn’t good enough, she could take her business elsewhere.

As usual, I walked into the room, greeted the tired and fearful looking patient, sat down and recapped what had transpired from a medical point of view. I told her I wasn’t smart enough to know yet exactly what was going on.

She interrupted me by saying she thought I was the smartest doctor around, and the only one she trusted, because I had common sense. She said:

“I’m a businesswoman – I know you don’t have the administrative support you need. You need your own secretary and more nursing support, and…”

We reviewed what needed to be done next, including another blood test to check what the powerful diuretics had done to her potassium level. I opened the door to the hallway and as I left the room, Autumn’s eyes met mine as if to ask:
“How bad was it?”

I revealed nothing. Then Priscilla emerged from the room and said:

“Autumn, I brought something for you and your little boy…”

My Father’s Eyes – The Song

In 1971, the year I turned 18, I was dating a Swedish twin.  We lived in a small city near the Baltic Sea.  One day, her older brother came rushing in with a new album he had just bought: James Taylor’s Mud Slide Slim and the Blue Horizon, the one with “You’ve Got a Friend”.

I was mesmerized.  I had applied to be an exchange student in America, and James Taylor’s music and lyrics were the sounds of the country I felt an inexplicable longing for.

In America, it seemed, you could create your own happiness:

“I’m gonna cash in my hand

And pick up on a piece of land

I’m gonna build myself a cabin in the woods

And it’s there I’m gonna stay

Until there comes a day

When this old world starts changing for the good.”

Through all my years of medical school, residency, fatherhood and life as a married man, I have found James Taylor’s songs to somehow speak directly to me: I even made a PowerPoint presentation last year about diabetic neuropathy, juxtaposing James Taylor quotes with imaginary quotes from Harvard’s top neurologist, Dr. Martin Samuels.

James Taylor’s brother, Livingston, is also a singer-songwriter.  I have heard him play at much smaller venues than his brother, including a nearby middle school. While James has always spoken to me, Livingston has come to touch me more and more in recent years.

Livingston Taylor wrote a song in 1991, the year I turned thirty-eight, ten years after I emigrated to America.  It moved me to tears then, but now, almost twenty years after that, I’m not sure how deeply I understood then what it would mean to me years later in 2008.

My trip to Sweden last month was divided between spending time with my elderly mother in her new apartment and joining her for her daily visits to the dementia ward where my father is.

When I arrived, my father was asleep in his wheelchair.  He was hard to rouse, but when he finally opened his eyes the recognition was instant and unmistakable as he laughed and cried at the same time.  He never spoke a word, but his fingers rubbed mine while I held his hand, and although his eyes drifted, they locked on to mine every so often, and sometimes his lips started working as if he tried to form words. 

Since that moment, Livingston Taylor’s song “My Father’s Eyes” has been echoing in my mind almost constantly:

 

“My father stands before me

In a place that’s his alone.

I’m guided to the future

I have the world to roam.

I stand up and I’m counted

A million miles from home

I can see forever

In my father’s eyes

 

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?


I just realized none of the posts show on an iPad or a computer, but they do show on an iPhone. WordPress is working on this. In the meantime, please visit my Substack.

 

 

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

CONDITIONS, Chapter 1: An Old, New Diagnosis

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