Monday 3 December 2012

Roses in the winter

Another resident passed away yesterday afternoon.  I am very saddened by his passing.  He didn't know me as he was blind and unable to talk or really form any thought but I knew him.  But people on mom's ward become like family and when they pass, it's saddening.  
His wife was a God send to me.  Like me she was a care giver and had been at the facility everyday for the last 5 years to help with the care and feeding of her husband.   When I arrived she could see and sense my sadness.  One day she joined me for a coffee and we got to know each other.  She told me to stop holding in your tears and just cry, and you can cry with me and I did.  I bawled into her shoulder.  What I loved about her is she is like me, she doesn't candy coat the truth or the reality.  She spoke to me of her journey along side her husband and how difficult it is has been and told me that it doesn't get easier.  She helped me to accept what is happening to mom and face the future with strength and grace.  She reminisced with me as she knew my mother as a volunteer and how gentle and loving mom was with the residents.  It made me proud.  But she told me the most important thing I ever heard, a quote from Sir John Barrie, the author of Peter Pan, he once said 'God gave all of his children memory so that they might have roses in December'.  I have heard that quote so many times but to hear it that day made me stop and think.  It was fall and winter was coming and caring for my mother would be cold and dreary but I would always have the memories of the woman she was and our countless moments together and those would be my roses in the winter.  But in those early days I looked at the trees and all the beauty of the fall and I wished that aging was like the leaves, who in their last days are so colourful and full of life.
Losing a loved one to dementia is an interminable loss.  It seems to have no beginning or end.  First you lose their short term memory.  Then their ability to do simple tasks is lost and you no longer can rely on them to even put groceries away properly or take a phone message.  Suddenly they can't remember simple words or context and they will make up nonsensical words and conversation is difficult so you can no longer talk to your loved one.  They then lose the ability to write or sign their name. Eventually they lose the concept of time and days get mixed and they will be up all night and you can't sleep.  Dementia will take away their ability to orientate themselves and they won't know where they are, even if it's a familiar place.  A person will lose their ability to judge appropriately and on a hot day they might wear a toque or many layers of clothing.  They lose their ability to manage their moods and will have extreme mood swings for no reason until they lose their emotions completely and become essentially lifeless.  A person with dementia may seem different from his or her usual self in ways that are difficult to pinpoint. A person may become suspicious, irritable, depressed, apathetic or anxious and agitated especially in situations where memory problems are causing difficulties. They will also lose their initiative for simple daily things like social outings or time with family and become very passive, sitting for hours in front of the TV or sleeping all day.
Eventually a person with dementia loses themselves and then the physical losses will begin.  Due to changes in the cerebral cortex, persons with dementia often experience changes in mobility and balance. Thus, basic functions like walking, standing, and sitting may become increasingly difficult as the disease progresses and eventually they lose the ability to walk.   A person in the later stages of dementia has uncontrolled bowel and bladder function. This should not be confused with a person who cannot remember how to use the restroom or simply cannot find the restroom, even in their own home.  A person in late stages of dementia may not receive the nerve signals in the brain signalling the necessity to urinate or have a bowel movement.  Appetite is lost in most dementias so many won't eat and sometimes they lose the ability to swallow properly (like mom) and they lose to ability to eat.  Eventually they lose control of their muscles and they can't hold a spoon or even scratch their nose.    It's retrogenesis literally because it's back to birth and it describes the gradual loss of everything by the dementia patient as the person ultimately functions much as a newborn baby.  They are helpless, need diapering and feeding and the only way left for many dementia patients to communicate is by crying or grunting. 
I'm going to send roses to the widow today and  I will keep my roses in my mind.



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