We Need to do Better

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.

Stephen

Whenever I see rhododendrons I smile and remember Stephen. Stephen was a fair, red-headed, freckled seven year old. He was full of mischief and fiercely independent. Stephen had cerebral palsy. His speech was limited and very unclear and this had secured him a place in the language class. When he arrived that first day he came with his parents. Stephen launched himself into the classroom, promptly tripping over his toes, but saved from falling by his ever-vigilant mother. His father looked up at us and said, with typical Yorkshire understated style, “Lad’s a bit unsteady on his pins.”

It very quickly became apparent that Stephen’s unsteadiness did not present any obstacles in his mind. He wanted to do everything by himself. We anxiously weighed every decision, to give Stephen as much independence as possible, while hovering unobtrusively trying to prevent skinned knees, or worse.

Stephen missed no opportunity to test the limits, giving us heart-stopping moments, and resulting in frequent “time-outs” for Stephen. Stephen particularly hated the feeding therapy he needed at lunch time. He would have much preferred to eat quickly and messily and go to play, rather than learn to bite, chew, and swallow with care. It became a race. Stephen would attempt to bolt into the lunchroom unsupervised, grab a tray, and rush on wobbly, giraffe legs around the room shouting , “I don’t like this dinner!” hoping to dump it into the rubbish bin before we caught up. He often succeeded or ended up in a tangle of legs, tray and dinner. It was an exercise in frustration for all of us. Finally relative peace was negotiated when it was agreed Stephen start lunch thirty minutes before the bell so feeding therapy did not interfere with Stephen’s independent lunch activities.

Another point of contention was the bathroom. Stephen wanted to stand at the urinal like the big boys. The shiny, five foot high porcelain wall was an irresistible lure. However, the coordination and stability required was beyond him at that time. The potential for injury was high, and this was reinforced almost daily by Stephen’s mother’s reminders in his communication book to “accompany Stephen in the bathroom at all times!” We were careful and it appeared, in this at least, that Stephen had accepted the limits. When it seemed like he could go in with the other children, use the stall, and emerge unharmed, we relaxed and let him go alone. After a while we noticed that Stephen’s hair at the front was always wet after a trip to the bathroom. We asked him why he was wetting his hair ? Stephen looked at us innocently and said, “I’m not.” Wanting to get to the bottom of this mystery, we peeked around the corner after Stephen disappeared into the bathroom one lunch time. There was Stephen, standing feet wide-spread at the urinal. He was intent on accomplishing his goal. To steady himself he carefully braced his forehead on the porcelain wall of the urinal in front of him. With a look of satisfaction, he completed his task. What he had not taken into his calculations, was the automatic flush time of the urinal. There was not quite enough time to remove his forehead before the water came. Undaunted, Stephen washed and dried his hands and patted his head with the paper towel before emerging. We didn’t say a word, sure that eventually Stephen would learn to move more quickly.

The year progressed with many battles and bumps. Finally it was the final field trip and picnic of the year. Stephen had not actually been allowed to go on any field trips with the class that year. His mother just felt they presented too many dangers. But on this last trip, she relented, after many assurances that proper precautions would be taken and, I am sure, a constant barrage from Stephen. We were going to a “stately” home and rhododendron garden nearby. The mansion was on top of the hill and the gardens flowed down the hill, a path wound down through the gardens to the picnic area and playground at the bottom. The entire hillside was covered with rhododendron trees of every colour possible. When we arrived the flowers were in late full bloom, the entire hillside was a blaze of colours, and many petals had fallen, making the path a colourful carpet as well. Stephen quickly wriggled away from the partner he had been assigned, and took off, running wildly down the petal-covered path. It looked like his speed plus the steepness of the path were going to combine to cause a serious accident. We were just about to take chase when Stephen skidded to a stop, bent down and scooped up an armload of petals. He turned to us, his face shining, and said, “Miss, look what I made!” and we smiled.

Rhododendrons make me think of Stephen, and smile.