Written by Michael West
Its carers week. I wanted to put out some words on where we are on our journey. I very much support my wife Karen who was finally diagnosed with Young Onset Alzheimer disease early in 2017, although the symptoms were there from 2015. It took a while to finally diagnose but we were so pleased we have a very supportive GP who put us on the right track. So it is now over 2 years on and we are definitely seeing changes in Karens ability to manage her life without support.
The final diagnosis was not unexpected but even so it was still a shock to all the family when the potential enormity and impact this could have on us all was suddenly there, right in our face. But with credit to Karen she looked right at it and embraced it with positivity. She was not going to hide and made the decision to tell people around her of her diagnosis so people could hopefully better understand her behaviours and difficulties.
Right from the start, as well as other pointers, we were put in touch with ADSS at Safeharbour. Our first guiding light was a home visit from Mandy Haines which was a springboard to take on board support services offered by them. Mandy at that time wanted to start a new Young Onset Group. Karen and myself were one of the founding members back in 2017. That group is now called the Kindred Spirits Group and meets every 3rd Tuesday of the month at Safeharbour in the evenings. From a humble start the group has grown significantly and new friendships have been forged. Credit to Sarah Taylor who now has the mantle for this group and for the support she has from the ADSS team. We sort of take over much of the café area now. Its tough having an early onset diagnosis when people have been looking forward to quite different lives without this condition. The Kindred spirits group is valuable to both cared for and carers alike. People can be lost in the early days and this group helps to give direction and assistance to be able to embrace and handle it. And we have a few laughs on the way. We have had Christmas dinners together, been to shows at the theatre and a good number of the group are in the Singing for the Memories group held every Monday afternoon. In fact its Jersey Boys at the Orchard tonight for a few of us, looking forward to that. This group was a springboard for ADSS to arrange ‘experience activities’ for people with the condition based on a brainstorm of ideas from the group themselves. To date there has been Curling ( the real thing and one of Karens favourites), indoor bowling, ballroom and latin dancing experience and walking in Jeskyns followed by a pub lunch. Walking football beckons next. There has been some boxfit experience too which was repeated and may come back again. It should be noted that these activities are for the people with the condition not the carers and this has proved pretty successful in my view.
Karen also loves to embrace the various memory cafes organised by ADSS. We have one in Meopham right on our doorstep, but she also goes to the Gravesend Group at St Georges and to a group at Homemead in Gravesend. Karen finds new environments and meeting new people challenging but these facilitated, regular and supported groups hit the right buttons allowing Karen to enjoy the friendships and being with others without anxiety
As a carer I am much happier when Karen can participate in groups and activities by herself and not necessarily expect to be with me all the time. It’s a question of getting the right balance.
Our real passion together over the last 10years has been ballroom and latin dancing which we still carry on and want to keep going as long as possible. Its something which we can still enjoy although learning new steps and techniques can be quite a challenge for someone with dementia. Its bad enough for myself. Thank goodness for a patient teacher. The whole dancing, music, theatre environment is a good escape. Karen has spent many years associated with music and dance over the years both for herself and with our 2 daughters and its there in the memories.
I suppose I should have said that I stopped working at the end of December 2018 as a conscious decision to be able to spend more time with Karen. I miss working but I am glad to have taken the step within our family situation. But I don’t want to be with Karen all the time if it is possible to get Karen doing independent activity. We still need to allow her to be as independent as she can be.
ADSS as an organisation are very good in giving support and ideas to allow this to happen. In carers week it is important to recognise just what good work they do. So a big thanks from us both for all the team.