My mum, MS and me - MS Awareness Week
Ellie Grace grew up with her mum who had Multiple sclerosis (MS), in her guest post today she talks about growing up as a young carer and dealing with the death of her mother. We understand this can be an upsetting subject so would just like to warn members that the post contains discussion of death. It is MS Awareness Week this week and if you would like more information, take a look at the MS Society.
Growing up with a parent who had MS, I genuinely didn’t notice anything different from our family to other “normal” families. I remember occasionally dreaming of a life with a Mum who could walk but it never got me down or made me hate the life we had. To me, our life was as normal as normal could be! We still laughed, we cried, we argued, we created great memories, we went on holidays, everything was just normal!
I only have one memory of her walking, she didn’t want to wake our guests and use the stair lift as it made too much noise so we snuck down the stairs. I used to play on that stair lift so much, everything designed for mum in the house was a toy or a plaything to me. It’s strange, all these things so familiar in your life, you never notice they’re there until they’re gone.
One night when I was sneaking downstairs to get some water I suddenly realised that I had crept all the way down on the left hand side of the stairs to avoid the stair lift and even avoided the wheelchair that was always parked at the bottom of the stairs, except they weren’t actually there, I had snuck past a completely empty space. I think that was the moment I realised I had the “normal” life I used to wish for, except it wasn’t normal because Mum was not around anymore.
I don’t think I ever realised that I was a young carer for mum until I was about 26 and been to see a psychiatrist. I mean, I was a 12 year old who would take a wheelchair out the boot of the car, assemble it, help her out the car and then happily wheel her around shopping centres. I would get things out of cupboards, put shoes on, you name it; I would do it.
It was only when I would regularly come home from school to find an ambulance outside the house that I thought things were starting to get bad. Eventually she started falling to the floor and I wouldn’t be able to help her up, we had to shift the dining room furniture into the living room so that we could turn that room into a downstairs bedroom. I even remember there being contraptions that helped her eat, helped her in and out of the bed, helped her do pretty much everything. But still, things didn’t feel hard, abnormal or different and I most definitely didn’t feel like a carer.
When I was 13 I remember making a very angry phone call to the carers as they could not come to help us anymore. I remember going to the shop and buying the best box of chocolates I could find to give to mum as she was shipped off to an old people’s home. I can’t imagine being a 47 year old woman who was so used to her independence, suddenly having to live in a home filled with old people.
Soon the homes turned into hospitals and my visits became so much less often. As a 15 year old I couldn’t imagine anything worse than visiting my mum in hospital, I mean by this point she wasn’t even my mum anymore. Everything had deteriorated, movement, speech, memory, you name it - it was gone.
One Friday afternoon I had left school because I was being bullied and I used Mum as an excuse to leave, Dad came home early and broke the news that he didn’t think it would be long before she died. So we got in the car and drove straight to the hospital, when we got there the staff said it looked positive and it could be much longer. I went into the room where she was and I just couldn’t handle it, I’m not sure who was there but it definitely was not the Mum that I knew. She was so ill.
Everyone left me alone with her and to this day I regret not staying longer but I was only 15 and to say I was emotionally unprepared was an understatement. All I could manage was an “I love you” before I ran out to the car park and cried. The next morning she was gone.
This was 11 years ago, the last couple of years have seen some incredible new developments in treating MS and I am so sure that we will see a cure in my lifetime. I am so determined to help find such a thing that I am doing as much for the MS Society as possible so that no one has to go through what me or my family did. In October I am doing a trek across the Great Wall of China in a bid to raise as much money as possible. You can find the link to my Just Giving page here.
She was the biggest fighter I know, I am going to fight until the bitter end with this one, just as Mum did.
What experience of MS do you have? Are you a young carer? Are you a disabled parent? Get involved with the conversation and let us know your thoughts.