Micheline Burkhalter from Basle knows what it means to provide care around the clock. She provided comprehensive care for her 28-year-old son, who has suffered from muscular dystrophy since he was small. In 2011, her selfless commitment was recognised with the award of the "Prix Sana". This health prize is awarded by the "Fondation Sana" - main shareholder of the Helsana Group - to people who take action for the benefit of their fellow humans.
"We were standing at the coffin and I asked myself: 'What film am I in?' Yet again, we had to bury one of Simon's colleagues. Like my son, he had muscular dystrophy, and I knew that my son could be next. It had all started when Simon was four. His kindergarten teacher advised us to seek medical advice because Simon was waddling so much. The doctors diagnosed Duchenne muscular dystrophy, a hereditary condition. They said that his life expectancy was 24 years. At the end, his heart and respiratory muscles would stop working. The worst thing was that we had no idea what to expect. All I knew was that there were two paths. One uphill, one downhill. I did not want to go down.
One day, my five year old son sat on the floor screaming 'These stupid legs can't carry me' , while beating his legs. I did not contradict him, and I am convinced that the honest and open approach to his illness made us mentally stronger. I needed that because my marriage was falling apart at that time. I had to take Simon to the doctor for any small matter such as a cold or a temperature, because a simple cold could quickly turn into life-threatening pneumonia. The constant fear for him dominated my daily life. At the Expo 2002 in Biel, you could write a wish on a card. Mine read: 'I want Simi to get well.'
In 2006, Simon started a commercial apprenticeship and lived in a vocational boarding school in Bern. At that time, he already needed full-time care. Whenever he was home, I adjusted my life to his day and night, because all he could move were his fingers. Simon continued to lose weight, at the end of his apprenticeship his weight had dropped to 33 kg. His wish was to live at home again. Even though everyone around me told me 'You cannot do that on your own': how could I refuse? With his return in 2010, the full burden was back in my life. During his apprenticeship, it had only been weekends and holidays. I was buzzing 24 hours a day. It was one thing to cook during the day, feed him, wash him, nurse him and do all the household chores. But the worst was never to have an unbroken night. I had to get up each night to reposition him. After two months, I was utterly exhausted. An occasional night nurse would have been an enormous help. 'If that's what you need, he would be better off in a nursing home' I was told by the authorities.
Over time, the burden became unbearable. I was merely functioning, I had no choice, as there was nobody else. Thanks to supplementary services provided by the Canton, I was able to take time out from time to time; once in a spa hotel. For the first three days, I slept 12 hours at a time, I did not really take in my surroundings. I was totally washed out. However, what really concerned me was Simon's continuing loss of weight. Just by chance I learned that he could be fed with a tube straight into his stomach. That was good news indeed. He gained weight, and when he felt better in 2011, he wanted to move back to Bern to be with his friends and to pursue his hobby, E-hockey with an electric wheelchair. However, a whole year passed before we found a suitable place. That time seemed like an eternity.
When Simon said he wanted to move out, I felt a sense of relief. I would have never told him myself that he had to go. Simon now lives in an assisted living community. I visit him frequently, we go for a walk and we talk about this and that. His health has stabilised, but I am aware that the situation can change rapidly at any time. I have learned to live with this reality.
Text: Szilvia Früh