Support for carers of stroke survivors
In the first of our blogs to celebrate stroke awareness month, Kelly Burke writes about his experiences of caring for his wife, Mary.
When did I become a carer? I guess this role developed as I continued to support my partner following her Subarachnoid Haemorrhage nearly three years ago. It seems that it’s an extension of our relationship, like a new dimension, in addition to our roles and activities together as partner, spouse, friend, parents, work colleagues and confidants. Mary, who has over 30 years experience as a trained nurse, has also cared for me when I’ve been critically ill in the past, and we have supported each other and our families through numerous difficult times. So I’m not sure if it’s always easy to separate these roles. It’s a journey we are making together.
However, there are times at hospital and work related meetings or when dealing with Department for Work and Pensions bureaucracy, for example, when I definitely adopt a more focussed carer role. Mary, who has always been very independently minded (!), will often tell me to rein it in a bit if I’m being overly concerned or talking in “carer” mode. We are often negotiating this when taking on new or critical activities and challenges. Organising hospital appointments, trips out or travelling abroad by car, train or boat bring up particular obstacles which need thinking and talking through. It took quite a while for me to not get anxious when Mary was travelling by herself on tram or train and involved many texts and phone calls to check if all was ok. I now realise what challenges Mary faced when managing new routes and buildings!
I think I have started to learn through sharing her experiences of recovery groups and activities and to “tune in” to Mary’s different view of the world and the challenges of dealing with sounds, spaces and over-stimulation. I can often recognise the distraction and fatigue which she suffers and how she copes in social situations. Helping manage medication, checking buffer days as well as diary planning and helping support some of the daily routines, which used to be taken for granted, are all changes which have had to evolve and adapt to changing circumstances. I have found that explaining these cognitive and memory changes to our children and other family members at times quite difficult as often they, as well as many of our friends, had not realised the full extent of the changes which the Subarachnoid Haemorrhage/stroke had caused.
I have realised that it is important to make time for myself to pursue my own interests and hobbies even though we share our love of gardening, playing music and travelling together. Sadly, we are not able to cycle together and Mary refuses to be seen on a tandem!
I have been involved in the OSCARSS group for the past few months which has given me the opportunity to meet other carers. We all have a wide and very varied experience of living with survivors of stroke and the services being offered to them. It’s is good to be able to share some of these experiences. Through our involvement with the project it is hoped that our voices and experiences as carers can be better understood and lead to improvements in services.
For more information about our Organising Support for Carers of Stroke Survivors (OSCARSS) work, please contact Katy Rothwell, Programme Manager. We are undertaking this work in partnership with the Stroke Association.
During the month of May, the Stroke Association is raising awareness of the impact of stroke, and sharing information and advice on how to help prevent the condition across the country. To find out more and sign up, please visit www.stroke.org.uk/makemaypurple.