My mum, MS and me - MS Awareness Week — Scope | Disability forum
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My mum, MS and me - MS Awareness Week

elliegrace Member Posts: 2 Listener

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.

 Photo of young girl and mother sitting in the garden, with their feet in a black box

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. 

Young woman in a black dress in front of a wall of art 

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.


  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,673 Disability Gamechanger
    Thank you so much for this post @elliegrace - I don't have MS but I do have a life long chronic illness and I worry about how this will effect my kids.  It's heartwarming to hear about your experience of having a disabled mum.

    Thank you for being so open x
    Senior online community officer
  • foxuk
    foxuk Member Posts: 102 Pioneering
    Thank you for the post.
    I couldn't read all of it as it hit a bit too close to home. My father had Frederick's Ataxia. He was given until 40 but died 5 years ago at 84. Nothing is fixed in stone.
    I get very angry at the way child Carers are treated. Just at the turn of the millennium our beloved Social services decided to make awards to child carers. The one that got all the publicity caused a big problem for me. She provided sole Care for her single parent mother with little to no help. Cooking, cleaning, shopping etc. all her responsibility. My problem was that if she had been left alone in the home, at her age, her mother would have been prosecuted. 
    In an ideal world Child Carers should not exist. Even in the world we have today their responsibilities and work load should not exceed those of other children of their age group.
    Society chooses to ignore the situation with it's consequences, physical and mental.
    We survive and some of us fight for those who are still in the situation we experienced.
    My thoughts are with you,

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,673 Disability Gamechanger
    Hi @foxuk I think that is such a valid point about young carers! 

    I have a chronic illness and so there are times where my kids have to step up and do more to help me, though I do have guilt around this I also think that my illness has taught them a lot and made them more open and empathetic.  But there is a difference between a child having to tidy up a bit and make a sandwich than a child having full care of an adult.
    Senior online community officer
  • bendigedig
    bendigedig Member Posts: 254 Pioneering
    MS is a terrible condition for people to deal with.

    I have had three friends in my life who have suffered with it one of whom I helped to look after before she died.  Sadly two of these friends are no longer with us..

    I have seen how MS affects the sufferer and their loved ones.

    My thoughts are with all those that suffer with the condition, as well as those that have to deal with MS in their lives.
  • tracy1972
    tracy1972 Member Posts: 1 Listener
    My brother was diagnosed aged 22 yrs. he will be 41 this month, he has had to give up a job he loved, is in a wheelchair 95% of the day, has had to move into a flat and adaptions are taking place i.e. Wet room, automatic door etc. It is so sad to see the deterioration in a happy go lucky young lad.  It's hard in everyone. He has split from his wife and doesn't see his children which hasn't helped the determination ( second progressive ms) I just hope he keeps fighting and gets to see his children , as with ms some people are ok for years and some suffer very quickly.  I hope they find a cure soon. As it's heart breaking to see.
  • SethLaa
    SethLaa Member Posts: 111 Courageous
    This post is heartbreaking, Ellie Grace did all she could and more for her mum with no light at the end of the tunnel. My Son does all he can for me but at only 21 years of age he should be out with his mates and finding himself a girlfriend. My MS is not as bad (for now) as what Ellie Grace's mum suffered and I am praying that it doesn't get that way, I don't care so much about me I simply want my Son to have the life he so richly deserves. God bless him, Ellie Grace and all the other young carers out there. 
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,673 Disability Gamechanger
    Vivien on facebook said:

     A thoughtful and moving article. MS is such a cruel disease and Ellie has written well about her experiences. Young carers need so much more help than they are getting and carers of all ages deserve more support both financial and emotional.

    Senior online community officer
  • Jayne66
    Jayne66 Member Posts: 36 Connected
    @elliegrace. Your story really touched home with me. I have ms & I find daily life a real struggle at times. All of my children have grown up & had left home before I was diagnosed but had trouble for years with my legs,so I possibly had it since my twenties. I find it so hard because I can't do the things I want to do with my grandchildren,I try to do as many things as I can with them,but the fatigue element for me is a real issue. I'm known as Nanny with the wonky leg,but even as young as they are,they understand & are always asking if I'm ok. @elliegrace you should be so proud of yourself.
  • sue66
    sue66 Member Posts: 124 Pioneering
    I have a grand daughter that has been diagnosed with MS like three years ago, She is only 22 and for the past year been struggling to keep her job as a hair dresser which she clearly loves and is very good at. In the end she had to face it she couldn't any longer cope and asked her boss to let her go and has been getting sick notes from her gp. :'( Her boss has refused to pay her a penny and she has now found out since being employed her boss hasn't been paying any stamp or tax at all and now she my grand daughter has been sent a bill for £400 from tax department. We thought it was odd when we found out she hasn't been given any wage slips at all.She is without any money and cant afford to run her car, that is on the days she felt she could even get up, get ready and even go out at all. She applied for PIP  last year and got 2 points, it would seem struggling to go to work went against her, you get nothing for trying. She went to HARK/HARC? for advice yesterday and they told her she has to take her boss to court. Poor girl hows she meant to cope with all this, has days when her legs feel like they are going to give out on her, problems with vision and now swallowing. and numerous other symptoms. Been On a course of whats known as infusions to try and halt this wretched illness but not done much to help.  I ask you, 2 points and no PIP. :# She clearly needs lots of help with personal care and mobility. The assessor she saw was very inpatient and sarcastic  with her as well.   I doubt my grand daughter will ever get to be a mummy which is so sad.
    I too for her sake and others hope that a cure is found soon.   
  • Jayne66
    Jayne66 Member Posts: 36 Connected
    @sue66  Your granddaughter mustn't give up with the pip side of things,easy to say when everyday is a battle. Maybe she could get a support worker,through the ms society? I have had the steroid infusions too. I now have plegridy injections,which I have to do every two weeks. Also on numerous tablets. The symptoms for ms are very sole destroying at times,but the one piece of advice I was given was don't let it get you,because it can win the battle very quickly. I really wish your granddaughter all the best in getting justice with the pip & against her former boss.


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