DEMENTIA AND UNDERTANDING

We dementia people are not looking for pity and indeed I bet the majority of us would despise it if it were apparent that someone felt that emotion. Of course realistically some people will feel that in the same way that personally I feel pity for others worse off than I myself, or abused children or animals.
An understanding of our illness though very welcome is sadly very lacking and indeed I myself, many years ago was guilty of not understanding that my mother's 'crazy' and hurtful behavior was in fact I now know  Alzheimer's. My only excuse is that I knew nothing about Alzheimer's forty odd years ago. In fact I don't think that I had even heard the word. Of course we all knew about senile dementia which we thought was prevalent in most people over sixty!
Our idea of senile dementia was that old people forgot things and physically deteriorated until they reached a comatose state and couldn't be reached. Few of us had personal experience or knowledge of Alzheimer's. Few, including myself knew that personality changes could take place and a nice kind person like my mother could change into an insulting hurtful demon at the blink of an eye. Because we didn't know about such things my brothers and I were often deeply hurt by our mother's behavior and consequently reduced our contact with her.
One result of my own dementia has been the search that I have been on to know what dementia and Alzheimer's were really all about. At first the information was confusing and often contradictory, particularly if one were reading from sources published twenty years or more apart. What struck me quite quickly was that not much more than twenty years ago Alzheimer's patients were often treated with appalling degradation and lack of respect. Nursing staff were told to tell patients the truth so that patients would face reality. We now know that an elderly lady who says that she is going to visit her mother, who we knew died thirty years ago will be absolutely devastated to be told the truth. We know that diverting the patient's attention to something else is by far the kinder thing to do, as they will quickly forget their original intention and be quite happy to be taken for a walk or read a book.
Understanding the strange quirks of memory when one is suffering from dementia or Alzheimer's does require some knowledge and spreading information is one of the most important things that we can do. It is very hard for 'outsiders' to understand that although many of us don't look as though we have anything wrong with us, inside many struggles are taking place. Our long term memory will be mostly good and indeed personally I find many very old memories surface more and more. How ironic it is that I recently remembered an event of my childhood almost seventy years ago and yet I often can't remember if I took all my tablets this morning.
Sometimes I find that my emotions are more pronounced nowadays. I am more inclined to shed a few tears over a moving passage in a book. I sometimes get sad at my memories of people long gone. Also, I am more quick to anger now and although my sympathies for others can be touched more readily, my irritation with selfish and ungrateful behavior is also more pronounced.
One benefit that I find of dementia is that one tends to look inside oneself more and be happy for the benefits of both the past and present. I count my blessings every single day and strangely, most of the time I am very happy. I love every day and live it to the full in my own quiet way by writing, reading and socializing.
Although I know that I have been very blessed in my life and at this stage I am particularly aware of  Julian,my wonderful caregiver and wife. She helps tremendously with keeping my diet and exercise on the right track and takes a great interest in not only my dementia, but also others and she has become very knowledgeable about the subject.
Whilst I am aware that not everyone will be as blessed as myself, I do remember talking many years ago to a survivor of the holocaust. I asked him how he survived it and he explained that it was by taking every day as it came and at the end of each day being grateful for something. He explained that every day there was something. Perhaps a particularly kind word from another camp inmate, or an extra piece of bread. Every day, everyone can find a blessing to be grateful for.
We humans are extraordinary creatures. On the one hand we are the most creative and yet the most destructive creatures on the planet. We are the only animal that has some members of our species who are deliberately cruel. Other animals will only kill to eat or in defense. Yet among us are those who can write and play beautiful music, paint fascinating pictures, or write great books. Yet above all if we find it from inside ourselves, our human spirit for survival is there to be tapped. Our kindness is there to be revealed and our ability to laugh and be happy is within all of us. It is these qualities that will take us through the difficult challenges ahead, but surely, above all we must remain positive and cheerful and live every day as if it were our joyous last.
David Barnato.
Paarl. South Africa.
barnatod@blogspot.com