in palliative care, ASP.
René BERBEZY : « What they did for my wife… »
Voluntary workers… unique people !
The ASP associations(1) represent the first French group of voluntary companions in palliative care. But it is not enough to call oneself a voluntary worker. In 1997, the National Union of the ASP trained 360 voluntary companions out of the 777 persons of good will who came forward.
René Berbezy(2) was able to mesure the beneficial effect of the work they did in the palliative care units. He relates what he experienced, with them, at the bedside of his wife, Rose.
« On 27 November 1995, my wife, Rose, had a cerebral traumatism during my absence and she remained lying in the sitting-room for several hours, semi-conscious. This was an immediate source of martyrdom for me. She was in different public hospitals, three months spent in the Invalides hospital. Then I had to put her into an old-age home, near to me, so that I could go and see her every day. The hospitals could not keep her any longer… Rose was paralysed down the right side , could not speak, was completely incontinent, suffered severe pain and had great difficulty in swallowing. But the hardest part for her, and I don't want to throw stones at anyone, was the feeling of being deserted, for lack of means and perhaps through indifference.
On her face one could read fear and suffering. She was covered in bed sores, as thin as a skeleton, and stuffed with painkillers that knocked her out. At night there was only one person on duty and Rose often had coming into her room senile patients, others suffering from Altzheimers's disease who got up to all kinds of things - I saw this for myself one evening when I stayed with her. She was terrified. I was ill with concern…
By good fortune, the doctor at the home was a remarkable man and he quickly realised that my wife must be sent to a palliative care unit. Already, at my request, he had agreed to give Rose up to 60mg of morphine , for I was pleading for this, I who had been given 1gr per day for three months when I was in the American hospital in Naples (in 1944). And so, when I learned of the existence of palliative care thanks to Mrs. Anne Dufeu of the ASP, I applied for it and we drew up a file which was accepted.
At that time, my wife weighed 34 kilos. Her body was raw with sores. She therefore went to the University centre, into Dr. Camberlain's service, where she was taken care of by a wonderful staff. Rose received palliative care for two and a half months, after eleven months of suffering. It was the very end for her. And I wish others could benefit from this much earlier.
In this unit, she was bathed and massaged with much love every
day for more than an hour. She came back relaxed. Gradually, her skin became
beautiful again. And her pain was less acute, in spite of little
She was taught, very gently and patiently, what movements to make in order to make herself understood.
The ASP volunteers were exceptional. Amongst them, there were young ones of 20-25-30 years of age and also a lady of 60, remarkable. Simple people, clerks, labourers… They were not concerned with the medical aspect. They brought their heart. They spoke to Rose, held her hands, comforted her ; they boosted my own morale too, they encouraged me. There were even some who hummed songs for Rose. In this unit, she was not forced to eat ; she so often pushed the food away. They taught her gently to make herself understood. The volunteers got her to take her meals, but she ate so little. When she saw them her face lit up at once with a smile. And I had seen her so sad and full of anxiety during the previous months. There was no more fear in her eyes.
These people gave of their time, simply by dedication. Rose and I always had faith ; it was faith that saved me in the war. Well, those volunteers, this is what they had. Unique people… We often hear that France is finished… I can tell you that these people prove the contrary ! I admire them for freely giving their time to persons who are seriously ill, wounded, terminally ill. I also had the good fortune of meeting Father Kammerer, that extraordinary man who was deported to Dachau and who is chaplain to the palliative care services. He gave Rose communion on Sundays. He managed to give her a tiny piece of the host.
She found the strength to say good-bye to me.
At the very end of her life, Rose was fitted with a pumping machine, like a little computer, which supplied her with the necessary medication for her pain. The doctors in the palliative care units are like the others, they prefer to give life, but they understand the necessity of accompanying the patient at the very end.
I left Rose on 19 December 1996 at 18h00. « She is going to eat, we will telephone you afterwards. », said the nurse. At 19h15 she rang me : so I spoke to Rose as I often did. Then the nurse took the receiver and said to me : I think she wants to speak to you. And then, I heard Rose say clearly : « good-bye…good-bye ». For a year she had been unable to utter a single word, and there, she mustered all her strength to say good-bye to me. An hour later, she breathed her last.
EUTHANASIA FILE :
« THE DYING ARE ASKING US FOR HOPE »
« I accompanied my husband… » (Alzheimer's
Voluntary companions in palliative care, ASP
In a hospital service,