When I was diagnosed with Lewy Body Dementia, my consultant told me that I should go home and spend time writing my life story, so that I had something for my family to read in the future including any grandchildren, as at that time I had not expected to see any while I was still alive. Shortly after this I heard that my daughter was pregnant and after three miscarriages was going to have her first child. We now have three wonderful grandchildren which is wonderful, so I have an extra reason to complete this story as I would like to share this with them given the chance.
Originally I was told to write this story before I was given any medication so I never expected to get as far as I did, but it took my mind off the future all together.
I have now been invited to join the National Board of the Life Story Network last week, to help them roll out the new training programme which they hope will help train care workers and health staff, to encourage people with dementia etc, to write a short life story about themselves.
These stories will help carers (or Care Givers ) and care staff to understand who they are looking after, and what these people did in life, such as where they were born, where they lived, who they married and who their children and grandchildren are, along with their past times hobbies, likes and dislikes. This will in the end give them a clear picture of who they are looking after.
These stories will need a lot of research to ensure that only the required parts of the person life are recorded and used, and anything which is hurtful or very personal will not be touched.
So when I was invited to join the Board, I jumped at the chance as I thought I had to do something to help them, with this training programme and tell them anything that stuck out as wrong or offensive or “patronising" to others I have met. But everything was so well organised and planned that I could find nothing wrong at any stage, and was truly amazed at all of the hard work that had been done.
It is very interesting working with this group, as everyone as everyone was upbeat and this was one of those meetings, where there were no negative thoughts, so I left feeling that I had achieved something positive.
To do this they are using a chest of 3 drawers as the method.
The top drawer is items that they will share willingly with anyone, and don't mind it being out in the open
The Middle or second drawer is the items that they will only share with close family as it is a little sensitive, and this should not be looked at, unless the person allows it.
The bottom or third drawer is used for items which should not be discussed at any cost.
This training has to be done properly as many like myself had problems in life that were hard to come to terms with, and I would not want to go over these again as they were too painful, and without my dear wife I would never have got that far.
I say that because when the first thing happened I was young and had no one I felt able to talk to, yet I had done nothing wrong, but had been wronged, by someone close to the family, and I knew at the time that they would be believed rather than myself, and it was a horrible time.
It was only when I met my wife and got married that this came out, and she understood just how I felt.
So with this in mine we have to consider others who could be in the same boat.
We must treat the person with the dignity and respect that we would expect from others.
Since starting my life story it has taken on astronomic proportions, as I kept remembering things that were said by my family and relatives. One of these days I will have to stop, and see if I can get it all printed and backed, for my grandchildren in the future.