Bowl

From the start Professor K was very clear. He was not going to pull the wool over our eyes and pretend that there was a miracle cure just round the corner or it would all get better on its own. This was only going one way. It was going to be about managing it and developing strategies.

We met a lovely woman from the Memory Disorders Clinic who sat down and suggested some very practical things to help with poor memory. The first suggestion was the white board. Originally the idea was that if R wanted to remember something to tell me about that happened during the day then she could write it down. It immediately filled up with messages of love from the family and R refused to wipe the messages off.

R is dyslexic and has never enjoyed writing at the best of times. It quickly became apparent that it wasn’t likely to be used that way.  However, it did make sense as a communication device in the opposite direction. R started to lose track of what day it was, and what was happening that day, so each morning before I headed off to work I would write down what day it was, who was coming round, if our son was home, what I had got her for dinner, and what time I would be home. She found this very reassuring and a great comfort.

One of the problems was how to handle situations where someone phoned and left a message. How could she remember to give it to me? She wasn’t going to be able to write it down. We tried various recording devices from the Memory Clinic but R is not very technical at the best of times and in the end we had to give up. We agreed that she would try to use the mantra “Call back later” to all callers who wanted to leave a message for me or impart some important information.

The biggest success was the idea of having a bowl on the coffee table where R could put things that otherwise she would mislay and spend ages looking for. Things like glasses, Kindle, hairbrush and so on. All she had to remember was to put important things in it and look for them there subsequently. A great idea that really worked. We bought an attractive plain glass bowl and before long it was filling up with bits o R’s life.

It was a great start.

Eighteen Months

In one way it has gone very fast – a blur of appointments, phone calls and arguments. On the other hand, it has been one long slow torture, watching the woman who is the love or my life disintegrate piece by piece. It has been very cruel. No fucking God. Don’t you dare.

I have had to learn about things I had never thought about before in my life. I have had to spend more time with Social Services than ever before, and wrestled with truly threatening forms. I feel closer to my partner than ever before and have found some powerful friendships and support where I least expected it.
 

I need to sort my thoughts a bit and this blog will provide the mechanism. There will be several threads I think:

The emotional journey. For some reason I thought helping and support would be just about giving. I didn’t think it would involve managing arguments, personal feelings of deep despair and facing up to complete failure.

Bureaucracy. The humour writes itself.

Science. There is a part of me that remains somehow strangely apart and clinical. I have always been fascinated by the brain and consciousness and here is a fascinating insight into how it all fits together.
  

At one time I was hoping to be able to keep a diary but for various reasons that was never going to happen. What there will be is a sequence of brief essays.

More to come.