Michael’s cultural activities

Glenys tells us more about some of the activities that her and her late husband Michael engaged with to support their journey with Lewy Body Dementia.

Can you tell us a little bit about yourself and your husband’s journey with dementia?

Michael was initially diagnosed with Parkinson’s shortly after he retired. He was having memory issues and a slight tremor. After seeing a neurologist he was prescribed Parkinson’s medication and shortly afterwards developed disturbing hallucinations. He was subsequently diagnosed with Lewy Body Dementia. I am a retired Group Library Manager, so my research skills were invaluable. Particularly as it led me to Rare Dementia support and the lovely Claire Waddington. Her help and support was invaluable along our journey. 

What role do you feel creativity played in this journey together?

Michael and I had a shared love of film, music the theatre and arts so these all played a part at various times along the journey.

In the easy days we still went to films, theatres, art exhibitions and museums. These were diverting for Michael. In the later stages I was able to arrange music therapy which Michael loved.

He even went to see the latest James Bond film shortly before he died.

What does creativity mean to you?

That’s a big question  and can mean different things to different people. For me it’s about freeing the mind from the everyday, to be inspired to learn new things and take your mind in a new direction.

What sort of things inspire you?

So many. A piece of music, paintings and films. During lockdown I did lots of Art History and History courses. They were often my salvation during difficult times.

Are there other activities that you and your husband found meaningful or enjoyed together?

Michael loved sport, particularly the grand prix. So I would put that on for him. Towards the end he often thought we were actually at the venues (if only!). He also liked horse racing so I would encourage him to pick a horse, I would too to make it more competitive.

What would you say are the most important things that creative and community spaces can do to be inclusive for people living with LBD?

To treat people normally and make access easier. I was also lucky enough to get Michael a place at the local dementia support club. They did all sorts of activities which gave Michael a real boost.

What would you like people to know about living with and caring for someone with LBD?

It’s a role you don’t sign up for. You have had no training and the hours are long. You have to realise that the person you are looking after is not the person you married and learn to live in their world. It’s not easy. There are rewards but they don’t outweigh the sadness of seeing the person disappear before you.