Wednesday, February 7, 2007

What to expect?

--February 7, 2007 Sample chapter

Dad was not putting sentences together very well--he could draw up many nonsensical words. He was napping every few minutes. He had some of his lunch still in his mouth. He was gesturing towards the bed and I knew he wanted to sleep. We pushed the call button and Cynthia came to our aid. She told us she would get Sharon to come and put Dad into bed. Sharon had a lovely sense of nonsense! Dad always smiled when he saw her. She is an attractive woman, perhaps in her thirties or forties, with dark hair and a winning smile. She always made a point of bending over, or kneeling down, and getting at his eye level. She told him she was going to get him into bed. I loved it when they treated him like a person and someone who might be sentient, even though all indicators pointed to the other end of the spectrum.

They brought in the big mechanical lift. This was a piece of equipment abhttp://lh4.ggpht.com/_yHrosClVZJo/SYTG_lgRrCI/AAAAAAAACTo/kCnRKoYvUTk/s576/68.jpgout five feet high that was plugged in to charge its batteries when not being used. On wheels, it could be rolled and moved around the room easily. Sharon made Dad lean forward. They put the jacket around his shoulders and up under his legs. She told me that he really did not like it. She apologized to him, even though he couldn’t hear her, for having to use the lift. It was a touching gesture and I think it helped. It certainly helped me. I remember one time that he enjoyed it and was laughing and smiling at me as he was being lifted. Once he was in bed, he was asleep in thirty seconds. We tucked him in. I kissed him goodbye and left.

I adored Sharon’s bedside manner. She was always respectful, kind, and caring at a level that went beyond her training. Her spirit embodied that of the PSW: she treated Dad with such dignity and respect at all times. Despite his inability to hear her, she always explained what she was doing. Jill Bolte Taylor, in her book My Stroke of Insight, demonstrated the respect, or lack thereof, that some staff members or visitors display to those who are perceived to be ill. Dr. Bolte Taylor suffered a life-threatening blood clot in her brain and wrote of her experiences. Since she had moments of clarity, with little brain function on the left side of her brain, she was able to understand emotions and feelings without having the language to articulate them at the time. She reminds caregivers and staff members that the best way to help those who are ill is to let them sleep. Beyond that, a caregiver’s respectful attitude is perceived on a deeper psychosocial level even by those with brain injuries and apparent dementia. She found that those who came in to visit her, if they possessed a positive attitude, and brought energy and a strong spirit into her room, gave her added energy. So many burned-out workers in LTC are hard-pressed to keep their energy up. So many of our RNs and RPNs are stressed-out beyond their abilities to cope. This has a profound effect on those in care. Read more about this on my other blog post: PSWs in Ontario.

Another issue that bothers me is that most staff members called my father by his Christian name. People of his generation, potentially four times the age of their caregivers, are being spoken to quite casually, as one would to a peer or acquaintance. I found this most disheartening. A generational thing, I would prefer more formality.

This new level of Dad’s illness created in me a visceral reaction that still haunts me. I kept fighting the reaction. It affected my whole being: body, spirit, and soul. It was very upsetting, and I kept thinking that I would be getting better soon. I would learn to manage my grief for my late mother, as well as grieving the loss of my father as I knew him. Each stage had an effect upon me. I took my emotions out and examined them like the clothes I was planning on wearing to our Valentine Ball on the weekend. I kept weighing my choices: I had two long dresses, more cocktail dresses than ball gowns, a new tulip skirt with a blouse I had bought. I spent some time trying them on, looking at myself this way and that. It was the same with my grief. I went back over events and put them up on a hanger to look at them from all angles. Eventually, I would pick the clothes that fit best. I would come to terms with all I had been through.

I dreaded the next levels from here in Dad’s care. I could not find out any information on what to expect. From a Web site I found out what I could expect in the last forty-eight hours. Eventually, it said, cancer patients succumb to a brain hemorrhage as the cancer cells fight for oxygen and destroy the brain cells. I figured that there would be pain, as there was for my mother during the last years of her life. I remembered going in every morning and after school, checking to see if she was still breathing. When I went in to see Dad, he was very still.
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Jill Bolte Taylor's stroke of insight | Video on TED.com

19 min - 10 Dec 2008
On the morning of the stroke, I woke up to a pounding pain behind my left eye. .... what a stroke of insight this could be, to how we live our lives. ...
www.ted.com/index.php/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

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