Over the years I have been amazed at the lack of interest, the church of England has in people with dementia, memory problems or parkinsons etc,
Many people grew up as members of the Church of England etc, and now feel like outsiders, because they are largely neglected by the church these days
I had started going to church from a very early age, then joined the Church Choir at the age of 8, and carried on going, until my memory went haywire
However as a person who grew up in a Church of England family, I find it staggering these days, that the church has so little time, or respect for people with memory problems etc.
Yet these people, are usually the ones who try to attend church regularly, and pay into the church plate every week.
Yes many Churches have had dementia friends events, but as a person who is religious, I know that is as far as it goes
We are tolerated, but not accepted in most churches.
I have spoken at many events about this subject, but in all honestly I don't feel that the church thinks enough about people with these nuerological illnesses.
Many of the clergy I have seen at events, dislike comments against the Church of England, but if they cannot take on board constructive criticism, then to me they are in the wrong Job.
We all grew up with the fact, that no matter what our religious views or beliefs were, we were all equals in this life
There are thousands of us around the UK and the world, living with an illness that we have no control over
We are just as religious as those who attend church every Sunday, but these days many like myself have simply given up the will to go, because of the constant changes in services and lack of respect
I once wrote the Bishop of Durham, explaining my problems with the changes of service, coupled with the fact that I sometimes struggle with very graphic nightmares during the night.
I then explained the fact that I don't really go into a deep sleep until around 4-5 am. After this sort of night, I am not what could be called a morning person, because it takes me time to get my brain into gear.
He promptly wrote back telling me to get up and go to an 8am service on a Sunday mornings, where they run the old forms of service.
So had he read the letter correctly?, or simply ignored the problems I and others face with this illness.
After that I decided that it was a waste of time trying to write to anyone within this establishment, because they were not interested in dementia or people with memory problems.
But I do think that when churches etc, hold dementia friendly days etc, they should make sure that they have people with the illness there, if not running it
People with this illness do not gloss over the illness, they say it as is, from their point of view. I know that we are all so very different, but that's life.
This is a vast difference to hearing about dementia from staff or volunteers, because they are not usually living with the illness, where we are
There are hundreds of variations of dementia, and all are so very different, with different symptoms and problems.
I once heard of a Church of England curate telling people that he thought it was a total waste of time and money, going into care homes to do services
In his view they all sat there and never took part.
But I do wonder if he realised that many with this illness live in the past, and remember the old forms of service, with old hymns and prayers.
They don't go in for changes to services, with modern songs which are sung over and over.
They need to be assured that services will be a simple and realistic as possible, with no long winded sermons.
It's just no good expecting people who grew up with old services to learn new services.
It's very upsetting when you grew up "saying" the Lords Prayer, then find that you have to sing it.
When I lost my job because of memory problems, I also lost the ability to remember the Lords Prayer, and I was devastated, as I had known it off by heart since an early age
I worked at this for months and then decided to return to church, only to find that the words were totally different, and not only that, but they changed every week, and sometimes sang it.
My wife spoke to the clergyman in charge but he just said, sorry that's life.
From then on I lost the will to go back.
We are supposed to be living in a Christian Country, but these days I am having serious doubts about this.
After this we found a book of short church services, in a charity shop.
This was written for people with dementia etc, and it's ideal, because everything you need is there.