The year following my diagnosis was challenging dealing with my diagnosis, the loss of my father and finishing work, apart from Family and my Neurologist, no support. Things changed when I started doing research and connecting with people and organisations on Twitter.
I started seeing posts about a new Post-Diagnosis course in York called “A Good Life with Dementia” through Innovations in Dementia and York Minds and Voices, a DEEP UK group. I read Damian Murphy’s blog about the up coming course, for people living with Dementia and their carers, which made me curious and the next week I read Wendy Mitchell’s blog about week one of the course.
The following week I read Damian’s blog about week 2, my wife Sheila agreed it could be something that would work here in Sheffield. I contacted Damian to see if we could visit for a morning to which he agreed.
Week 3 of the course, turned out to be a turning point for my wife as well as she got a lot out of the morning as well. It was held at Lidgett Methodist Church
where we all sat round a large table
When we got home we talked about it and Sheila agreed that I could go again but this time on my own. Talking to Wendy Mitchell, who suggested using a phone app so that Sheila knew where I am and Sheila felt she could try it and see if she was happy with me going it alone, so I contacted Damian who agreed.
Going to Week 4 of the course was challenging going alone, the noise and busy stations were challenging but the session including perceptions made it worthwhile.
By Week 5 I had some in-ear Headphone which were ok but didn’t cut out all the noise and was an interesting morning based around a Market Place for 6 local organisation..
On Week 6 I had some over ear Headphones which were much better and the session on our rights was very enlightening..
The final session Week 7, “Graduation Day”, a session reflecting on the course and was a mixture of happy and sad feelings. Happy that I had continued on the course, learnt so much and been able to do the 130 mile round trip on my own, sad that I had met so many wonderful people and I wouldn’t be meeting up with them for sometime.
The course is a valuable peer to peer post-diagnosis resource, for people living with Dementia and their carers, where we all learned from each other and of some of the things we can access. Talking face to face is so much more powerful than a video and someone at the front reading from a script. Websites are ok but its finding them and as one gentleman pointed out, he can’t use a computer anymore.
There weren’t just people at the earliest stages of Dementia, some were further on in their journey BUT they still had a lot to contribute and are going on to join York Minds and Voices along with their carers who were also took part in the course.
Damian Murphy has written a blog about comments by people on the course.
Rachel Fowler, a Student Nurse, was at the course each week helping out and herself learning, saying
“It’s opened up my eyes to a world I had never previously experienced and gave me a whole new understanding that will help me enormously in my nursing career.”
If this course can have that effect on a small group of people living with Dementia and one student Nurse, imagine reader, if this course was run all over the UK and the world !
As the Alzheimer’s Society week has changed from Dementia Awareness to Dementia Action, it is time that our rights are no longer ignored and post-diagnosis support and Rehabilitation, from the point of our diagnosis of Dementia, should become the norm.
I wonder reader if locally and nationally, post-diagnosis support will become a reality for persons living with Dementia and their families.
This course has shown me that I can live within my limitations, knowing that as time goes on those limitations will become greater.
Whilst in the end stage of Dementia, there may be suffering for the person with Dementia and their family, society and the media should no longer put those of us in the earlier stages of Dementia into the media box of wrinkly hands and the state, regardless of where we are in our journey, should now put us on a par with other Chronic Diseases where they are referred to as fighters not sufferers.