Rosemary MacLeod explains how friendships and social activities have changed since her husband Donald’s diagnosis.
Donald was a diplomat so throughout our lives Donald and I had moved around a lot. Because we were quite nomadic we didn’t really have a close friendship circle in one place.
When Donald retired we moved to a beautiful home the Isle of Skye but when he was diagnosed with dementia in 2013 we realised that living so remotely would be problematic so we decided to move back to Edinburgh. We have strong ties to Edinburgh: it is where Donald was brought up; I had worked here after university; our four children where at school here when we were living abroad and one daughter still lives here.
Our experience of living with dementia has been quite mixed. There is no doubt about it; some friends do melt away. Donald still looks young for his age (we are both in our 80th year) and is quite physically fit so at first people will tend to assume everything is okay, but you can see the uncertainty in people’s faces when they realise that he is confused.
Before Donald retired our life involved going to lots of social events and networking with people we didn’t necessarily know that well. Now we only really see people we’re close to and in places that are familiar to us. All of the responsibility for keeping in touch and making arrangements is now with me.
While things have changed and our social circle has shrunk, it isn’t all bad. Since we moved back to Edinburgh so many people have been in touch and we’ve been quite open with them all about Donald’s dementia. Facilities in Edinburgh are extremely good as far as museums and galleries go. We are now the recipients of activities on offer rather than contributors.
Two of Donald’s old school friends with whom he had remained in contact go walking with him.
Our daughter Katrina, who lives in Edinburgh, has been very supportive. Donald’s younger brother also has dementia and Katrina has been wonderful with her uncle too as he has no wife or children of his own.
It also makes a difference when people in the community are kind and compassionate. The manager at our local Tesco knows about Donald’s dementia and has been very helpful. I think one of her parents has dementia too. She is always very sympathetic when he goes in to get his paper. Walking to the shop to get his paper is the last bit of independence that Donald has and we think it is important to keep this going as long as possible; the support of our local community – shopkeepers and neighbours – is crucial in making this possible.
Life with dementia can be very difficult and it is important to have people around you, even if it is a smaller circle of friends than you’re used to.