Soul2Soul Blog


“With my siblings, we divide the day in three: 7 to 12, 12 to 5 and 5 to the time my mother goes to bed, around 9. This way we can each have one day off. I usually do the middle of the day. My little brother is still working; he does the evening.“ Phil was standing next to his mother’s bed. She was dozing, under the blankets, only her plump head visible. The room was bathing in the afternoon sun, everything neatly in order, the artificial flowers, the clothes, the family pictures. It was Aglae’s second day in this room, my first visit to her, and to her family, admission questionnaire in my hand. The main questions had been filled already by the rehab place, where Aglae had spent the last four months. But there was not much about her history and her personality. I was glad Phil spoke English. Bit by bit I learned the family saga, their migrations, their difficulties. I understood why, maybe, the siblings were mostly oblivious to the services offered by the staff. This woman, peaceful in her clean bed, had been their rock, their anchor.

I participate in three Family caregivers support group each month. I hold a safe place for the participants; I listen as they exchange stories, resources and pain. They complain about family members, those who don’t do enough those who do too much; the” caregiver syndrome “comes up: a number of caregivers will die before their loved one. Someone used the word sacrifice. We know spouses who “don’t want any stranger in our home.” Is it pride; is it ignorance, it being stubborn? I have heard it called love and this is the word I have started to use.

I thought of love before, exactly a month ago, when I read Gus weekly medical report. Bleeding tumor, the doctor had ordered surgery for the following week. I imagined Gus, lying under his fluffy comforter. What is going through his head? His wife Denise, the love of his life, passed away five years ago, from cancer. He helped her. Then he moved to his daughter’s house. Last year, at the age of 98, he moved into this community. He looks lonely, when he shuffles cautiously along the hallway, pushing his walker on his way to the sing-along. He was a chess masters, but has not been able to find new partners. Who decided the operation? Did he want to please his daughter? Did she want to help him? I thought about the statistics, the anesthesia’s risks, the suffering. The only, unreasonable, reason I could find was love.

I am concluding this somewhat disorganized post, as disorganized as our emotions, by a touching French documentary L’ALARME DE LOUISETTE (LCP, 2017). Marie Sophie Teller filmed the last years of her grandmother, living alone in her house in northern France. As her disorientation increases, relatives step in. Two daughters share most of the care and struggle with frustration, as the communication becomes more difficult. The camera witnesses everyone’s bruised feelings, the burn-out, the decisions, during the loving process of accompaniment.

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