Not hiding away
I've just been watching this clip https://blog.thealzheimerssite.greatergood.com/cs-rick-steves-powerful-video-advice/?fbclid=IwAR170YsMyZhk1yH_GQoHQvdZY90XTaLz5hz9giZJYN7dOGZi1ZsE7pHWws8 and it made me think of how far I've come with all of this. The guy in the clip is talking about how important it is not to hide away when dementia affects someone you love. When we were told at the memory clinic that Ash had dementia my first instinct was to run and hide. I thought it would be embarrassing, that it was an old person's disease and that it would be too hard for other people to have us around. Initially I told five very close friends, but they were sworn to secrecy, and then I went away to lick my wounds. Ash's feelings didn't really enter my head as I assumed that he would just stay at home unable to function and that we would sink further and further into isolation. We got through Christmas and the following few weeks and then I decided that maybe other people needed to know. I got in touch with the initial group of friends and told them they could spread the word and then contacted those friends who I wanted to tell myself. It was a slow process but I was amazed by the response I had. Those who heard the news from me were overwhelmingly positive and I started to think that this might not be the worst thing in the world to happen to us. I now tell everyone I know that Ash has dementia partly because I no longer think it's anything to be ashamed of but also because I feel that if people know they can ask questions, they can find out more if they want to and they can work out how to react to him and us. Many of our close friends have a copy of the 'Contented Dementia' booklet explaining what's happening to him and giving strategies to support him and this has helped so much that when we go into social situations now I no longer worry. Friends don't ask him questions, they include him in conversations and, because they know what to expect, invite us to events, parties, meals out etc. I hear about people who keep it all a secret and I understand why but I think it's such a shame. The more we go public with situations like this the less stigma is attached but also the less isolated those of us living one step removed from dementia are and the wider the load can be shared. Dementia, I have discovered, really is nothing to be ashamed of, frightened of or avoided. If you are in this situation I highly recommend telling all and sundry. There will be the odd one or two who will avoid you or talk to you without mentioning it but they will be in such a minority that your faith in human nature will, I'm sure, be restored. You will know to keep away from those who don't want to know but you will also learn who your friends are and that, I have discovered, is one of the most important aspects of all of this.