A short story as to why I am raising money for my chosen charity. My mother was a very special person. Her family meant everything to her, they were her reason for living. She showed this in so many ways, from preparing a satchel for the plane journey with very firm instruction not to open this until airborne, the satchel was full of goodies, the flowers in your room and the little presents on your bed welcoming you home and she was always in the kitchen waiting for you, cooking and baking things to celebrate your return. She was a very gifted artist, a painter and sculpture - the house is full of her works of art a constant daily reminder of her.
All this was robbed from family and friends through a long history of depression that was then compounded by dementia. For six years I acted as her unofficial carer and support for my father. They had been married for 53 years. Slowly her condition worsened over the six years to the point where I could not cope on my own. Not fully understanding that the reason my mother was not pulling out of her periods of depression was due to the ever-encroaching dementia. It was a very distressing time for all the family but particularly for my father whose wife of 53 years was fast disappearing. We did not know to what extent my mother was suffering but we knew she was aware that all was not right as she kept repeating " I am not well " as if to excuse her behavior. We were very fortunate that we were able to nurse my mother at home and the whole family were with her when she passed away in November 2006.
Through my experience, I am sure there must be other family carers in the same situation I was in, trying desperately to look after someone they love dearly but finding it "Oh so hard" when they begin to behave so out of character and not knowing the best way to look after the illness of dementia when it is so individual to each person. The information from the medical team was "look on the internet", as I said each person is an individual and the very nature of dementia is that it affects each person so differently. The information on the Internet is impersonal.
So I have decided to embark on a pilgrimage by pony and carriage from Essex to Santiago di Compostela 1400 miles. Starting 15th July 2007. The pilgrimage is to raise money to set up
A two-part workshop for family carer's to explore living with dementia.
The workshop will:
Enable carers to understand the physical damage caused by dementia in relation to our everyday living skills.
Help carers to use their unique knowledge of the person they care for to build on strengths as well as support their needs and difficulties
Explore potential barriers to good communication
ave the opportunity to raise any concerns or questions they may have in relation to caring for a person with dementia
To reach the above aims we will use examples from Olga's experience of living with her dementia along with anecdotes from Olga's family to help carers see that they are not alone in their concerns and challenges.
The overall aim of the course will be for carers to feel better informed about the disease and have some strategies they can use when life feels difficult for them.
The reason I chose 'In Olga's memory' is because it encapsulates how the course will work. Dementia was the cause of some of the problems Olga faced by destroying the brain cells that contained 'Olga's memory' and indeed the memories of all people with dementia. Like a thief, this disease sneaks into our brain and steals our memories including those that allow us to do everyday tasks.
Therefore the title reflects the individual experience and the nature of the disease for all people with dementia.
The success of the workshops depends on the generosity of the community on giving, how ever little it is, it will all go to the building of the workshops.
