My father, John Alexander Blake, passed away in 2014 after living with primary progressive MS since 1988.
My father was an active man, he liked most sports, was ex-army and very independent. His MS was manageable in the early years. But it got gradually more difficult for him to manoeuvre himself and lead an active life. When he was diagnosed there were no treatments for any type of MS. Now there is a lot more on offer, but unfortunately it was the wrong time for him.
Supporting my dad
As he lost mobility he became depressed. But we had still had lots of happy times together – we want to local parks and often went out to eat together in accessible places. When he had to give up his job and needed help around the house I became his full-time carer, until he started to need professional care. Towards the end of this life he spent periods in hospital and care homes. I always looked forward to visiting him, and he looked forward to my visits. He kept his sense of humour.
Sadly, the way my father was treated in his last weeks of life was not what either of us would have wanted. The hospital placed a ‘do not resuscitate order’ on him without consulting me or my father. I didn’t agree with this, and I didn’t get to say goodbye to him. I put in a complaint after his death and fought hard to get this recognised. The Liverpool Care Pathway, which the hospital was using at the time for end of life care is no longer used by the NHS.
Remembering the happy times
He was the best father anyone could wish for, very open, warm hearted, forgiving, kind and generous. He wanted to make his family happy.
He was the best father anyone could wish for, very open, warm hearted, forgiving, kind and generous. He wanted to make his family happy. I have lovely memories of watching TV and drinking tea together in the evening, sharing our similar humour. When I was a child we enjoyed trips to the cinema – I particularly remember puzzling over the meaning of 2001 Space Odyssey with him! I miss him very deeply.
Remembering my dad through his tribute page
I set up an MS Society tribute page to my father as it’s a tangible connection for me to him. It’s somewhere I can go and add to, maybe listen to one of the songs posted there and remind myself of him. It’s a place of reflection.
Fundraising through the page is also important to me, as there are thousands of people who have MS in the UK. They aren’t necessarily going through the same life experience as my dad, but if there’s a chance of finding even a cure in the future then I’ll do it on behalf of my dad.