Christmas Star

I grew up with my parents, the only child.

I also grew up with friends, and had very tight and warm family ties with my father's sister's children - my cousins, my brothers in spirit.

About twenty years ago, my father's health had declined so much that he could hardly work. He had recently been laid off, as a part of cutbacks just before his employer went bankrupt. Physical labour was hard on him, and we, his family, did not understand why, how, or how much. He received unemployment benefits as long as that was permissible, and then he got a job with an old friend, who owned a technical clothing store. That did not work out very well, because it was really tough on father to walk among aisles and restocking clothes. He even fainted once.

The late eighties and nineties were wondrous times in many ways, but the medical profession had hardly heard about ME or COLD/COPD as we know these classifications today. Getting medical recognition that my father was effectively unable to work was almost impossible, particularly considering that he – as so many from his generation – was a smoker. If you have any kind of problems with general shortness of breath, and a doctor asks you, "do you smoke", answering "yes" was then (and apparently still is) a very, very bad idea. The smoking then becomes the only focus, and the rest of the patient's problems seem pretty irrelevant.

But my father did get his disability pension.

In 1994, his father - my grandfather - fell in the snow and froze to death. He had been a widower for five years. Father and his sister inherited a small farm house with a little bit of land, in Vang in Hedmark. My parents sold our house in Oslo, bought my aunt's share, and moved. I moved to an apartment in a more central location in Oslo.

It was strange to not see my parents every day anymore, but it was also a sort of relief - a young grown-up probably benefits from moving, and I think I did. I certainly felt it was over due. :) But I kept regularly in touch with my parents, visited them every month or so, and we continued spending Christmas together every year, with my surviving grandmother, as we had for every Christmas since I was born in 1972.

Through the years, my father's health kept declining, and he became less and less active. Traveling became a chore.

In 2001, a very good friend of mine was diagnosed with particularly aggressive melanoma, but there was hope.

Around the same time, my father's health was so bad that he hardly walked around, and he didn't drive a car anymore because he thought it was irresponsible and unsafe. My parents sold the farm house and the land in 2002, and moved to an apartment in central Hamar. The apartment was fairly well suited for the elderly and disabled, and it saved my mother lots of house and garden work - which of course my father could take no part in.

My friend's cancer spread.

I still celebrated Christmas with my parents, every after grandmother died in 2003. The same year, my friend collapsed in my arms in a seemingly epileptic fit. That was a brain tumour. The same spring, they discovered that the cancer had spread to his colon. A few friends and I were visiting him a fine May day, when he suddenly panicked, started hyperventilating, pressed his pain pump's button repeatedly and pulled the alarm string. We were ushered out by the nurses. Five minutes later, he died, shortly before his family came to see him.

A couple of years later, my father was completely dependent on an electrical wheelchair, a chair or a bed - standing unaided was a risky affair. My mother and father rarely left Hamar, socially or otherwise. This was a pretty heavy burden for us to bear, my parents were both socially active before, and had many good friends. My mother was diagnosed with operable breast cancer in 2005, and the tumour and lymph cysts were surgically removed within a couple of weeks.

I had started sleeping with my phone next to my pillow.

We still celebrated Christmas together, and in 2007, my father took a chance, and visited his sister in Oslo for her 70th birthday. It was a wonderful day.

I never went anywhere without my cellphone, and made sure that I had the wireless house phone with me even in the bathroom.

In the summer of 2008, my father's brother-in-law, my uncle, was admitted to hospital because of what he thought was severe constipation. It wasn't, it was cancer. I visited him about half-way into his first week in hospital, and he was already so weak that he couldn't sit up and had to wear an oxygen mask, but he was fairly lucid. But he looked no healthier than my friend did just before he died, and right enough, a week later, my uncle was dead. My aunt and my cousins still came for my father's 70th birthday shortly afterwards, and it was a very fine celebration, despite that I had to drive my father home early because he was too tired.

My father went through a lot in those later years. He broke his hip from a fall indoors, and he needed extensive home care. He was frequently in the hospital for emergency care. I started having trouble sleeping, and was constantly worried for The Phone Call.

Late in 2008, my father was admitted to palliative care at Prestrud in Hamar, it was now too hard and difficult to care for him at home. My father had probably already suffered brain damage from lack of oxygen - which was untreated, because, hey, he was a smoker, and he just couldn't stop smoking - his withdrawal symptoms were too bad. And, hey, if you don't stop smoking, you don't get proper medical care.

My mother and I still hoped that we could celebrate Christmas in their apartment, but it was soon obvious that it would be impossible. So we prepared to celebrate part of Christmas with him at Prestrud.

I recall that Christmas Eve more vividly than most. My mother and I followed most of the old routine. The TV was on, and the traditional movie "The Journey to the Christmas Star" was showing as it always is. A character, Sonja, sings the song "Christmas Star, come to me", and I start crying.

We visited father at Prestrud, had Christmas cookies, biscuits, hot chocolate with cream and a good time, all considering.

A day in February, my mother called me at work. Father had pneumonia. I told my boss that I had to go, and went home to pack. Shortly afterwards, my mother called again; father was dead.

It was a strange funeral. Warm and melancholic, a wonderful priest - Helge Hognestad - who had an exceptional grasp of the humanity of it all. The first part of the funeral was tough going for me, but then I held my speech for father, and talked about many of the good things and times that I associate with him. Carrying his casket was tough, too, but when the hearse drove off, I was so relieved that I couldn't stop smiling.

Father's suffering was over. Mother's suffering was over. My suffering was over, too.

But then came the double whammy: in late spring, mother was diagnosed with pancreatic cancer, the kind which has seen an amazing increase in surviving patients, then at an estimated whopping 5%. It was a very hard blow, but then my mother and I started talking about it, and she decided to live her life in full, for however long that was.

In spite of awful side effects from chemo therapy, in spite of bloody vomit and other unsavory details, she kept on going. We went traveling together twice, my mother went alone or with others several times. She sometimes had to cancel before going, sometimes had to abort the vacation half way, but she never really gave up. We kept more in touch than before, talking at least every week, and meeting once or twice a month. We talked about good things and bad, and had a stronger relationship than in many years.

She started dancing swing again. She took up bridge, which she thought she was awfully bad at after so many years. She did almost all the things she couldn't do while father was too ill to go anywhere, or too ill to be left alone.

Her health kept declining, in some ways much as my father's had, but far quicker and therefore more visibly. Nobody blamed smoking, though.

She got help from Hospice Sangen, a day facility for people with severe illnesses, particularly cancer patients. She had an "open return" at Hamar hospital, in case she needed medical care, there was always room there. She got home care from nurses, whenever necessary, and at regular intervals with increasing frequency.

This fall, she was admitted to Hospice Lovisenberg, Sangen's "mother" facility in Oslo, for help with her significant pain medication problems; the medication just wouldn't take. She was fairly active while she stayed at Lovisenberg. Two Saturdays, she went shopping with me, the first time also with her elder sister. Lovisenberg got the pain sorted out, and on Monday a month ago - my birthday - I drove her home to Hamar again, thinking that she seemed a bit tired and reduced, but all understandable, since she had been stressing herself out a bit with packing and whatnot. Besides, she had been getting enough morphine to kill grown men several times over, on a regular basis, for weeks.

The following Wednesday, we talked on the phone again. She was more tired, and felt a bit unsteady on her legs, and had therefore gotten a four-wheel walker. I decided that I wanted to check up on her after the coming weekend, which was full of plans for myself - birthday party, roleplaying, etc. I told her I was coming the following Monday, and she was happy that I wanted to.

I called again on Friday during lunch hour, and my mother said: "I don't have much time left now, Jan. Can you talk to my sister?" and handed the phone over to her sister (not the same who went shopping with us just two weeks earlier). She explained to me that mother was lying on the couch (as she often did when she felt tired), but that she had hardly eaten that day, and my aunt didn't dare leave her alone. I said I'd try to get there this weekend.

I talked to my boss again, tidied up a few pressing tasks at work, went home and packed. I cancelled the party and notified others that I was not coming for roleplaying or other social events. I then told my mother and aunt that I was coming that evening, got into the car, and did as I said.

When I got there, we got help from a nurse so that mother could get to bed and sleep there. She was very tired, and barely coherent, though she heard and understood us.

The following morning, mother couldn't even sit up without aid, and she could not drink and swallow her pills without help. My aunt came back during the day, and we convinced a supervising nurse to have a look at my mother's now fairly swollen legs. We then convinced the nurse to call for an ambulance, and had mother admitted to the hospital that Saturday night.

At hospital, I called my youngest cousin, the closest person I've had to a brother, and told him briefly how it was. He said he'd come and keep me company.

During the night, mother had occasional pain in spite of the better pain medication and well-adjusted morphine pump, and occasionally lucid moments. Her breathing was laboured, but when the nurses managed to adjust the morphine dosage up by a third and the bolus frequency limit down by a third, she was well relieved. I had to push the button, though, because my mother could not.

In the early morning, her breathing slowed and became weaker. She was sleeping or dozing all the while, and I was holding her hand, and my cousin was holding mine.

Her face was tilted slightly towards me, and one eyelid was slightly ajar, the pupil aligned with my face. She died so peacefully that I can't say exactly when it was. It was beautiful, and I wouldn't have missed it for the world.

But I miss you, mother, and most of all today, and now I think of Sonja's song and cry.