I haven’t posted a blog for quite a while and want to bring you up-to-date with events in my life over the past year. If you have tried to contact me and received no reply, I want to offer an explanation. I am now 89 years old, just 2 months away from my 90th birthday. Just over a year ago, I was diagnosed with vascular dementia. A friend is helping me to post this, as I now find it difficult to find my way around a computer. I want to share my experience with others who might have dementia and also with those who care for them.
When I was diagnosed, I was shocked. I was told to focus on the joys in my life rather than the handicaps. There are many things I still enjoy. I love spending time with my friends and family who are all very supportive and understanding. My grandchildren are a delight. My garden gives me great pleasure, although I find it hard to work in the garden because my mobility is now limited and I am in danger of falling. I use a walker and have a stair lift. Most days I take a short walk to a nearby café for coffee, but it is annoying that I must always have someone with me.
Many of the things I used to enjoy, I can no longer do. At age 87 I went to a gym 3 times a week and worked for hours in my garden. I have written 5 books and many articles and used to write a monthly blog on my website. None of this is possible now. I was having a lovely time, and it is not easy to accept this dramatic change.
I find it really frustrating that my short term memory is now so bad. Put yourself in my place. If you couldn’t remember things, how annoying would that be! It’s not so much that I can’t think, it’s that I can’t remember what I thought. Sometimes I forget what I set out to say half way through a sentence.
I can’t remember a conversation five minutes after having it. Keeping a sense of humour helps. In a conversation with a group of friends, I find it easier to take part if I can talk about a subject I choose. Joining in with their subject is harder.
Reading is another issue. It’s one thing to read but another to understand what you are reading. When you are reading a book or newspaper, you have to remember a train of thought, and this is now difficult for me. So what was once a great pleasure is now a challenge, but I keep trying.
One afternoon last week, I had a rest as usual. I was very tired after a long walk. When I woke up, I was very confused and in a panic. I didn’t know who I was and where I was. I thought I was working as I used to do years ago. It was very strange and confusing. After a while, I was OK. My wife told me that when I was in hospital recently after a fall, I had a day when I was in a delusion, very similar to today but prolonged. I thought I was leading a workshop at an Oxford College and the doctors were the participants. I wanted to tell them that they needed to compromise with me and let me go home. I didn’t understand that I was in a hospital, and I have no memory of any of this. The incident at home was a bit different, in that I knew something wasn’t right.
I hate the feeling of being out of control. I find it very hard not being able to go anywhere on my own. I dislike being “looked after” and need to be treated with respect in spite of my limitations. Thankfully, there is much that I can still do and enjoy. I love going down to the Saturday market in our town, especially in the summer when I can sit outside at a café table with a coffee and watch the activity in the town. I really enjoy being out and about. Sitting at home can be boring. I don’t want to do crosswords and puzzles. I want to be among people and in touch with the world.
Although I am no longer active as a campaigner for positive change, I still offer my website and writings as a resource and hope they will be of use for some time to come.
Bruce Nixon 