"its all about people and relationships" - by Gemma Knox for Grandma Rose
My name is Gemma (@GeKnox) I am a second year Adult nursing student at The University of Salford. I was born in the early 80’s in a small town in the North West of England. Growing up I only had one grandparent around that played a big part in my life, the others had died when I was too young to remember them properly. My Grandma Rose was born in 1920 in Oldham with an Irish heritage. She worked in the fields over in Blackpool during the Second World War, went on to marry my Granddad Bob who was in the Navy & they had 4 children together . . . . .
Growing up, most weekends I’d go and stay with my Grandma Rose, we’d do the usual boring stuff (as far as kids are concerned) like going to Manchester on the bus. Those days it would be on the 82 bus at a cost of 12p return. First stop to the ‘barrow boys’ for fruit and veg, they to buy an apple turnover to take home for Saturday night television, which would consist of catchphrase, Blind Date & Murder she wrote. She was a huge part of my life for almost 31 years, our birthdays being 3 days apart. When I grew too old for sleepovers we’d all still go out as a family almost every weekend and have Sunday lunch, where she’d often try & smuggle any left-over meat out in a tissue for the dogs at home. It’s these, and millions upon millions of what seem insignificant ofer small memories that made her so special to me.
However in 2010 at 90 years old the onset of vascular dementia crept in, and by late 2012 she no longer knew who any of us were. Writing this bit now is still so painful. Remembering the once happy old lady with an awesome sense of humour who would always have her hair set in rollers once a week, a skirt, blouse & matching cardigan with her perfect false teeth & glasses . . . . to the frail angry looking lady who no longer knew what the glasses and teeth were for nor would she wear them. The last time I saw my gran before she was admitted to hospital I came to realise that I had already lost my beautiful Grandma Rose. This cruel illness had not only taken her pride, sense of humour, her independence but most of her memories as well. It was the fact she no longer knew me or smiled when she saw us that hurt the most.
In March 2013 I was due to start my degree course in Adult nursing. University had organised an induction day for Wednesday the 23rd January, however this was to be a bitter sweet day. On Tuesday the 22nd we had a call as a family to say my Gran had been taken to hospital from the home she was in as she wasn’t well. When a hospital phones you to tell you to go down, you know that the person is a bit more than unwell. My lovely grandma had developed aspiration pneumonia as a result of vomiting and the end stages or her dementia. That day and night we sat round her bed and watched her fade away surrounded by all the people that loved her, for a few minutes I believe she may have known that, or at least that’s what I like to think. Grandma Rose died in the early hours of the 23rd January 2013, just over 6 weeks away from her 93rd birthday.
So, I hear you ask what has all this got to do with Tommy Whitelaw? Well back in 2013 I went to the NHS Expo conference in Manchester with some fellow students. Upon walking past some of the stalls and ‘pop up’ café’s my colleague said “here, come & listen to this guy, he’s really good!”.
Sitting near the front we started to listen to this guy ‘Tommy’ talk. As he did he drew me in with his story about his mum with dementia. I’d never met him nor his mum & he never met me or my beautiful Grandma – but our stories & feelings were so very alike. This touched a raw part of me that I had pushed deep inside. Deep somewhere were only I knew how much this ache hurt. The ache of missing someone you loved so very much and for the first time since her funeral I felt that awful lump in my throat. No one else ever who had talked about dementia had made me feel like this. Tommy has a gift, a gift of knowledge and experience combined with heart ache and love that connects with those that listen. Not only did he in his own words speak about his mum in a way that I felt about my gran, but he also described the fire that I have inside me as a student nurse that he saw on rare occasions in other nurses. When my gran was in hospital for those 24hrs there was one nurse who was truly awful, he was so unhelpful, so uncompassionate, so lacking in the understanding of the pain we were going through. Yet in the evening the charge nurse could not have been more of an angel, she helped, listened, cared, understood but most of all gave her time to ‘just be there’ for us. This was the nurse Tommy speaks of, the nurse I admired and the nurse I want to be.
Upon being moved by Tommy’s ‘love story’ of his journey, his turmoil, and his desperation for help combined with his love, care and compassion for his beautiful mum I was in admiration of this wonderful man.
Once I had pulled myself together and cleared up all the excess liquid from my eyes and my snotty nose we (myself & two other students) had a quick chat with Tommy. I mentioned how moved I was and how wonderful it would be if he was able to get his story to the rest of our fellow cohort, as I’m sure his story of being a carer and coping with dementia would have a massive impact.
In my opinion people think dementia is just being forgetful - losing your keys, forgetting what you’ve told someone . . . Oh, it’s so so much more than that. So much more painful and so much crueller.
With the help of twitter and a few University lecturers myself & my colleague managed to get and organise a ‘date’! On Wednesday 18th June 2014 Tommy attended the University of Salford as a guest speaker. Give or take the wording, Tommy delivered his same story to a small congregation of students from different branches, lectures, carers and the general public. Sat at the front of the lecture theatre a steady noise of sniffles began to grow. In a bitter sweet way this made me proud. This proved that those in that room felt as compassionate as I do, cared as much as I do and connected with Tommy and his story in a way no one else has done in that room.
When I was asked if I would consider writing this blog I did wonder what I would put in it. But after Tommy’s presentation I didn’t need to think any longer. Several fellow students came to thank me for helping to organise this, and their comments made it all clear. I asked them if they would kindly send me a direct message with their opinions and feelings and with their permission I would include it anonymously in this blog, this is their responses.
“Hi Gemma I have no doubts so much work is being done about dementia awareness. I can only speak for myself but feel today was so much more powerful and eye opening listening to real, first hand stories. I have cared for patients with this cruel illness so have witnessed confusion and sometimes fear that the sufferer can feel. It’s a pity Tommy can't be cloned to take his story all over the world! I for one will make it my aim to dispel all negativity about this condition and raise awareness.”
“Think he (Tommy) had enough impact on those who were there ”
“Thank you to both for organising it. I'm just so grateful really that Tommy shared his story with us, it was inspirational and very powerful”
“Only eighteen hours later and I could still cry about Tommy and his Mum’s, "Beautiful hair." He really touched my heart yesterday”
“Please thank Tommy, he was absolutely amazing. He reminded why I’m here putting myself through this course to become the nurse that he spoke about. I hope he never stops doing what he is doing, because his passion and honesty is more effective than any lecture, journal, book I’ve read. A true unsung hero like most of the carers without a voice in this country. A lovely man that his ‘wee mum’ would be proud of”
“I admire him for sharing his life story. His continued dedication to keep promises to his mum, Joan. You feel his pain and frustrations. I don't think there were many people in the room not affected by what he said.”
Now I could sit and reiterate all the above and others that were sent to me, but I don’t feel there is any need.
People need to understand the ripple effect dementia has on the individual and those that care for them, yet it is also like an iceberg – the bit that you see, is nothing compared to the stuff that you don’t see.