I have just finished reading “I Will Never Forget” by Elaine C Pereira. It is the story of her mother’s developing dementia and how she coped with it. (My review is in the Book Review section of my website www.pam.id.au.)In one section her mother ‘escapes’ from the home where she is being cared for and Elaine expresses her anger and how that could have happened.
It took my mind back to my own mother’s condition, diabetes, and the stroke that, while it didn’t kill her body, it killed her life. It roused my own anger.
Mum was a very active lady playing lawn bowls at least twice a week and was club president. She was involved in many community organisations including delivering meals on wheels and while I was tourism manager for the area she was my most reliable and enthusiastic information centre volunteer.
She had Type 2 Diabetes but thought it was controlled through diet and medication. Then out of the blue, she suffered a massive stroke paralysing one side of her body and affected her speech.
Since her stroke, I too have been diagnosed with Type 2 Diabetes. My doctor has me on a care plan that includes regular blood tests to track not only my sugar levels but also blood pressure, cholesterol and lots of questions about my diet and exercise. The care plan also includes regular visits to the podiatrist and optometrist to check feet and eyes that are more susceptible to problems due to the Diabetes.
I have learnt that the correct diet is not one of just avoiding sugar based foods but a normal, healthy, balanced diet and a little sugar is not a big threat. Apart from not having a care plan, Mum’s understanding about diet was “no sugar” and nothing else. There was nothing about watching cholesterol levels and the other checks that my doctor, fortunately, ensures I undergo.
I don’t know if, at the time she was diagnosed, this knowledge of method of caring and monitoring patients with Type 2 Diabetes was not well known or if her doctor was slack.
Armed with new knowledge about the condition I was angry. Seeing this lady who loved life so much forced to live in a wheel chair and later confined to bed was heart breaking. I was angry that this beautiful, energetic woman spent so many years not being able to communicate, move of her own free will or even feed herself.
I will never know if this lack of understanding for her condition was to blame for the stroke but I felt I had to blame someone as I watched her deterioration both physically and mentally.
Once she was checked out of the hospital she was put in the first available nursing home. There was no attempt at rehabilitation or very little. It was a depressing place in itself without any mental stimulation. I tried my best to keep her speech up by talking to her about her beloved grandson, taking my dog to visit her and some speech cue sheets I had made up. Unfortunately, I could not be there every day and the nursing home staff and my step father were not prepared to keep it up. She eventually completely lost the ability to communicate at all.
My Mum and stepfather had friends on the central coast of NSW and he decided he was going to move into a facility in that area where he would have a self-contained unit and Mum would be in the nursing home section. This was a four hour trip from where I was living at the time but he was insistent even though there were excellent similar facilities where they were living.
My stepfather passed away about three years before Mum and I was unable to get agreement from the rest of the family to move her closer. Then one day the call came that it was unlikely she would see through the next 24 hours. That was enough notice for me to get to her side. She seemed to recognise me but was unable to speak. I sat there with so many emotions running through my mind. Had her diabetes care been lacking? Did she understand that her family were unable to visit her frequently because of distance? Her friends in the district had passed away many years before. She had no one in the immediate area. Should I have put my foot down and argued stronger to have her close to me? Should I have pushed my step father more to stay in the area? And would all this have made any difference at all?
That was five years ago now but I am still angry. Angry that my Mum who was always there to help me when I needed it spent so many years alone without her family close by. I am angry with the medical system, the individual doctors and nurses and my stepfather but most of all I am angry with myself for not being able to foresee her decline and not doing something about it.
Love you Mum and I am so sorry.
