I was visiting the long term care facility to evaluate a patient. He was aphasic after suffering a stroke and was to come to the outpatient rehabilitation facility where I worked for ongoing treatment. As I walked into the day treatment centre, I was stopped by a woman in a wheelchair smiling broadly. I recognized Margaret, a woman I had treated the previous year.
I was pleased to see her looking well and happy. Margaret squeezed my hand and produced a stream of unintelligible jargon while looking at me expectantly. Realizing I did not understand, she shrugged her shoulders. I looked around for her husband Peter, who had always been nearby to translate when Margaret’s communication failed. I didn’t see him, so I asked “Where’s Peter?” Margaret’s eyes filled with tears. She shook her head, touched her throat, and banged her hand on her chair. I understood immediately.
Margaret and Peter were hard-working immigrants who were the caretakers for an apartment building. They worked side- by- side daily. They kept to themselves. Margaret had suffered a massive stroke which had left her with global aphasia and a dense right hemi paresis. Her language skills had been decimated. When she tried to speak it was generally rapid, fluent gibberish which came out. She was very frustrated. Her husband Peter was always there. He seemed to know what Margaret was trying to say and would participate in every session. They were in perfect synchrony. Peter would provide words for Margaret, but it was clear who was providing the content! Through facial expression, gestures, and a whole series of accompanying noises, Margaret confirmed or rejected Peter’s words until her meaning was conveyed to her satisfaction. Slowly Margaret gained in confidence and made adjustments to her altered circumstances.
As that winter progressed, I began to notice that Margaret was not looking as well-groomed as she normally did. Peter, a small wiry man, was even thinner than before and had developed a chronic cough. I urged Peter to see a doctor about his cough. Margaret nodded her head vigorously, gestured to Peter’s ever-present cigarette package in his shirt pocket, and made a strong, loud noise. They had obviously had this discussion about Peter’s smoking and his seeing a doctor before. Peter was annoyed, and muttered about it not being the right time, glaring significantly at his wife. Time passed, but Peter’s cough did not. I was very concerned and asked the social worker to pop in to see if she could help with some respite care for Margaret so Peter could be treated. Reluctantly, Peter and Margaret agreed.
There was a reason Peter and Margaret kept to themselves and did not socialize. Their life revolved around helping their adult son who was a diagnosed paranoid schizophrenic. Sometimes he did not take his medication. He became paranoid, unpredictable and abusive. The little family had closed ranks, to deal with their lot in life, in isolation and silence. That was just the way it was, no choices. We found out that lately Peter had been settling Margaret into the car in the parking garage with a thermos of coffee, quilts, and a flashlight, while he did his rounds. He was afraid to leave her in the apartment with their son. Respite was arranged for Margaret and Peter finally received treatment for what was discovered to be laryngeal cancer.
Margaret came for therapy from her respite home by herself a few times. Without Peter, I wondered how well she would communicate. When so much is lost it is amazing how the human will to connect survives. With no usable speech at all, Margaret told me her son had been getting much worse. He often disappeared for days. He sometimes tied pillows around his body, under his clothes, and carried a kitchen knife around, sure that he would be attacked on the street. She wanted him hospitalized, but with the recent changes in mental health care, the emphasis was on community and family. Margaret made a disgusted sound. Now Peter was ill, she was in care and her son was on the streets.
I did not see Margaret again until our chance meeting. She was telling me Peter had died. I expressed my sympathy. Margaret told me her son had not been seen since Peter died. He was still sick and, she feared, alone. She gripped my hand hard, and stared emphatically. Just then some of her friends called her to join the group. It was obvious that she was well-liked and cared for. Margaret turned to go, giving me a last, hard look. I was happy for her but I agreed with her, we have to do better.
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