Barry, from NSW, says awareness in your local community of your circumstances can make a big difference. #ItStartsWithYou
“What is the one change that would make your community more dementia-friendly? A very difficult question for me. At the community level it is hard to come up with something. However, my thought is this.
The local community’s awareness of those people within their sphere of conduct can be a real source of happiness and pleasure for both the person with dementia and the people who interact with them.
Let me give a couple of examples that may help the reader understand what I am trying to say.
Just around the corner from our home there is a BP service station. The people who run the station, in particular the lady at the front counter, do know about my wife’s, Joanie’s, situation. Sometimes Joanie would go wandering and after a little while she would return home with no problem. This was in the early stages after her diagnosis. It turns out that Joanie used to go for a walk around to the service station and take a chocolate bar from the sweet rack and then walk out with it (she had no money).
I was not aware of this until one day I went around there and found her in the shop with eight chocolate bars and with her about to leave to either come home or wander off somewhere else. The lady behind the counter, it now becomes clear, was always aware of Joanie’s little excursions to the BP station and loved the fact that she knew Joanie’s situation and allowed it to occur.
The fact is that the more people in the local community who are aware of those in their midst who have Alzheimer’s disease the better it is and the safer it is for all concerned.
The other example I would like to give is as follows.
A year after Joanie had been diagnosed with Alzheimer’s Disease, I decided that we should do the Scenic boat trip from Budapest to Amsterdam before her condition became any worse and while she was still able to enjoy it. I did make a point of letting as many passengers as I could know about our situation.
As it turned out, this was a godsend. We were in Salzburg, Austria, and had some time to ourselves to have a walk on our own. While I was purchasing a small toy for our grandchildren (I am talking about maybe 30 seconds here), Joanie went walk about. I turned around and she was gone. Not panicking, I decided to walk for five seconds in one direction and look ahead to see if I could see her and then, if I could not, to walk for 15 seconds in the other direction to see if I could see her there. This was to no avail.
It was then about time to be back at Mozart square ready to walk back to our bus in order to go back to the boat which would have progressed further along the river by now with all of our things on board, of course. Needless to say, some of our fellow passengers were sitting in the square waiting for everyone to arrive back at the appointed time and, low and behold, one of them saw Joanie marching with purpose through the square on her way to who knows where.
She thought this did not look right, Joanie by herself without me, and so she grabbed Joanie and kept her seated. I, by this time, thought that my next move prior to calling the police, was to go back to the square and let them know of my situation without Joanie. Well, they saw me come into the square and yelled out that Joanie was with them. They said that the relief on my face was something to behold. The outcome of this near tragedy was a good one, but it would so easily have been terrible if it wasn’t for the fact that most of our fellow passengers were aware of our situation and when the opportunity arose, the tragedy was avoided.
Once again, if people know your circumstances, they are always accommodating and only too willing to be of help when needed.
After reading this story I have a different outlook as far as taken my Husband on a cruise, he likes to wander& talk to anyone that will listen how ever time is so precious that not many want to be listening to him.we have been on 3 cruises befor Michael got dementia he often says he would like to go on an other trip but I'm very reluctant how he might come a cross to the other people . I herd a story of a man who was taken of the boat because his wife ventured in someone else's cabin. But after reading your story maybe I can make him happy on a short cruise. Sylvia
Hi Barry - I endorse your comments 100%. It is essential to advise family, friends and community of the dementia diagnosis as early as possible; we become the educators, but in the long run it pays dividends all round. Thank you for sharing your experiences. All best.