On the 5th July 2005 my younger brother called me in the middle of the night from a holiday in Mexico, saying "Mum's had a stroke". I was 21 years old, my mum, Jan, was 46. I couldn't comprehend at the time what this meant for her and our family.
Mum was in intensive care in a private hospital in Cancun for three weeks before being brought home in an air ambulance. She spent a further six months in hospital in the UK.
Those weeks and months are a painful blur. I have a few vivid memories, one being when a neurologist spoke to us in very broken English, he showed us brain scans which you didn't need to be a neurologist to see that there was major damage. We were told it was very serious.
For the first few days, her life hung in the balance then the general prognosis was unlikely to walk, talk or live an independent life. It was terrifying. My heart really goes out to anyone in that scary place right now. All the uncertainty is hard to cope with. Stroke is so sudden and quite literally tips lives upside down.
Overnight mum lost her mobility, her speech, her career as a driving instructor, her independence. I lost my number one person to go to in a crisis, my safe place, the person I could tell anything. Mum could fix anything, but not this. After we got back to the UK and mum became more awake and aware I could see her fight and I knew she absolutely wasn't going to fit the prognosis. We were told at multiple points that mum would make the most progress in 6 months, and then no progress after 2 years. We were told that as well as no speech, she had such significant receptive language difficulties that she could no longer understand us. I knew that could not be true. I knew her better than anyone and I just knew her responses to us were appropriate.
Mum’s recovery has most definitely not been easy, there were some very low points in the first few years. It took mum a long time to overcome depression and achieve acceptance for the rough hand life had dealt. She now drives (this was her number one goal) her beloved adapted Mini, can walk short distances, communicate very effectively, live independently, volunteer at the stroke association, look after her grandchildren, travel and fully enjoy her life. After years of having people tell me how inspirational mum is we started writing a blog. It’s an honest and open account of our lives after stroke. We focus a lot on Aphasia in our blog, as this has been the biggest long term impact of the stroke, mum explains in her own words what it means to have Aphasia in this video.
Mum struggles with word finding, reading and writing but has everything formed fully in her mind, she just has challenges with communicating it outwards. Her intelligence is absolutely intact and she is an incredibly skilled communicator, utilising total communication. Mum always has pen, paper, her phone, a talk back app to help with reading text, she is the queen of gestures and when all else fails just laughs at the silliness of it all. One of mum’s favourite phrases is “a laugh a minute”. A positive impact of the stroke is that my career path changed after a began volunteering at a stroke support group and I now work as a Stroke Support manager at the Stroke Association. I manage our wonderful team in Hampshire and the Isle of Wight. Stroke Association support groups and specifically communication support helped mum hugely. There is so much information and advice on the Stroke Association website for anyone who has had a stroke or cares for someone who has. There is also a really helpful self-management tool to aid recovery called My Stroke Guide.
The use of technology is so very important to aid recovery and reduce isolation, especially during this strange time of COVID-19. It has fast tracked mum and many others into needing to use many different platforms, mum has always been quite resistant to technology but has been forced into a world of online video chat, which she is actually now really embracing both with family and in her volunteer role.
I think it's really exciting what can develop from here to connect more people online and further aid communication. "Getting Online for People with Aphasia" is a great resource to assist people with Aphasia to get online.
I can’t think of anything much more isolating than losing the ability to communicate. It has been heart breaking at times to watch the challenges my mum has faced, especially being treated as though she has low intelligence or isn’t important enough to be included in conversations. It is however also awe inspiring to watch all she has overcome and what is possible in stroke and language recovery.
Mum’s language still improves year on year. 15 years of improvements. It is unhelpful for Stroke Survivors and those around them to be told that recovery is time limited. It isn’t. It is so important to utilise all the information and support out there, the apps, the tools, the support groups.
The biggest thing I have learnt from being the daughter to an amazing Stroke Survivor and from the hundreds of survivors I have met through my work is that any opportunity to practice communicating is therapy. Talking with new people, or utilising new resources makes you a better communicator.
It may not be possible to get all of your words back after a severe stroke but recovery is so much more about confidence to communicate in new ways by any means and to be understood and supported by the people around you.
Carly Davey
About the Author: Carly Davey is from Portsmouth,England. She has worked in stroke support at the Stroke Association for the past 10 years. Her Mum, Jan suffered a life-changing stroke in 2005 aged 46. Carly is passionate about helping others to rebuild their lives after stroke.
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