Monday, 8 September 2014

Thoughts about Alzheimer's Disease

            September is World Alzheimer's Month. I read an article the other day about a family impacted by this horrible disease and it got me to thinking about my own family. For those of you who follow this blog, you will know that my grandmother had Alzheimer's Disease well over 20 years ago. I watched as it stole her from us piece by piece. As her dignity disappeared. As the person we knew, no longer existed. Yes, her body was there, but how horrible that the essence of her as a person we knew, was no longer. On some level, one wonders what disease is better or worse to die from - one where you know what is going on or one where you don't? That being said, no disease is 'good' and all diseases take with them the hidden victims that are rarely accounted for in the statistics we are so often presented with - those who love and look after the afflicted person.
          My window into illness, as a former hospital social worker, has given me a perspective on many diseases. I have watched many people struggle with issues around death and dying and witnessed families bind together or pull apart because of disease. This sort of stress can bring out the best or the worst in people I suppose. At the time our own family went through it, I was not yet a social worker but I do believe that the professional I became, was in large part shaped by that life experience.
          I think, what makes Alzheimer's so difficult a disease to witness, is the progression. There are people who can live many years with it. And in some cases, at risk of wandering which necessitates them being institutionalized in a 'secure unit' for their own safety. How horrible it must be to visit your loved one in such a place!  Knowing they will never be well. Watching and waiting for them to die. I remember meeting a woman whose husband had early onset Alzheimer's in his 40's, and lived for many years with it. She said in the early years they never knew what was wrong with him but in the end, they lost everything because of his inability to work for so many years. She is one of the statistics of people living off basic pension but it is only because she was dealt a 'bad hand' in the game of life. My heart went out to her as I tried to imagine how someone like her managed to raise a family and care for a sick husband for so many years.
             With our increasing aging population, I worry about what the future holds for our seniors of tomorrow. Will we have the resources to cope with the many people afflicted? Will the dollars spent on research give us a cure or at the very least a means of delaying or diminishing the impact of the disease? Will we find better ways to provide care for those greatest at risk? It's fitting that the symbolic flower the disease are 'forget me nots' however, the irony is that for any family that has witnessed the disease first hand, the last thing you can do is forget the person or the disease that led to their slow demise.

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