Interview with Mia Thijs, spouse of pALS Claude Fifi
Claude Fifi from Mol was a vibrant, sports-loving man who worked as representative for a company specialized in workwear. He played pétanque (bowls), loved going for a drive and lived for his wife, children and grandchildren. In September 2010 Claude noticed he struggled pronouncing certain sounds. As at the same time he was taking antidepressants, the medication was initially considered to be the cause. However the symptoms worsened and ultimately Claude and Mia went to the hospital in Leuven where he was transferred to Professor Robberecht. After various medical examinations, the doctor informed him he was suffering from ALS – a disease neither Claude nor Mia had ever heard of before. Nobody however informed Claude and Mia that the disease would be terminal. A prognosis of two years was suggested.
Claude tried to supress the prognosis and continued with his normal life as much as possible. But his abilities rapidly decreased. Six months later he could no longer eat, speak or drink and a gastric feeding tube was placed. To communicate, Mia created an ABC-board which allowed Claude to point out letters. To smoke, he put on a nose clip for swimming which allowed him to take a drag of his much loved cigarette. One sunny day, when he wanted to enjoy a beer, Mia came up with the idea of freezing beer so he could let a cube melt in his mouth. She did the same with chocolate milk and Martini. It felt good to enjoy the familiar tastes.
At the hospital in Leuven they were put in touch with the ALS Liga where they had a constructive talk with Mia and Danny and received a speech computer. Claude followed all the developments on the ALS Liga website. And so life slowly continued for Claude and Mia with the daily difficulties and Claude’s decreasing abilities. At times the issue of quality of life became evident and the question arose whether continuing to live this way was worthwhile. But Claude looked forward to seeing his children and grandchildren. His son’s wedding was one of those moments he would not miss for the world and he managed to be there. The same for his grandson’s birthday party held at a playground. Claude was brought to the playground in his wheelchair and enjoyed the warm rays of sunshine and refreshing water on his face. But once those parties were over, he suggested at times that it was enough. The day after the birthday party he suffered such severe breathing issues he was brought to A&E at the local hospital. Mia had the feeling the staff barely knew what ALS was and when the A&E doctor scornfully remarked to Mia that Claude ‘was still a robust man’, something broke inside her. Eventually Claude was transferred to the hospital in Leuven where he was put on a oxygen mask and was administered morphine.
Mia, who had been exposed to severe stress for months, did not realise at the moment that the end was near. On his last day, Claude was watching the football match Belgium-Turkey from his sickbed. But on his letterboard he pointed at the letters T and O. He meant: “Tomorrow, tomorrow it will be over”. And so it happened. Claude passed away on the 4th June 2011.
Mia looks back to these difficult, but at times, beautiful months with many emotions. Claude was in a dark place. He cried and sobbed often. He did not want to see visitors, not even good friends. When there was family in the house, he sought seclusion in the bedroom. Mia often wonders why the medical staff left her in the dark. “If I had known the end was so near, I could have done or said certain things”, is a thought that often crosses her mind. But she also looks back with a happy heart to the day the doorbell rang – it was Mia’s birthday that day – and a big bouquet of roses was delivered with Claude proudly looking on. He managed to order these for her! A gift demonstrating his love for her, but probably also to thank her for having shared the suffering and having battled through these final difficult months together.
Translation: Lynn Osten
Source: Nieuwsbrief 153 – July, August, September 2011