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Parenting while living with a MND

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    Parenting while living with a MND

    First off, I am definitely complaining here and I’m sorry I’m advance. But I am SO tired!! My daughter has been ill since Friday, with a sore throat, fever, vomiting and non stop cough. This is the third time she’s been off sick since the end of April. It’s been broken sleep, 2 am wake ups and all nighters. My husband is working, so it’s up to me, and frankly I seem to be the only one she wants when she’s sick. Then all day, up and down the stairs, making chicken noodle soup and tea with honey. I honestly don’t know if my body will allow me to keep up with this. Now on top of it all, I’ve started a sore throat and cough with fever!
    Does anyone else have young children that they’re looking after? How did/do you manage?
    I am exhausted ☹️😴😮‍💨

    Oh angie
    I cant help you with this one. My kids are all grown up. I've often worried how anyone with children copes. Surely there must be something but the whole caring thing seems to be a disaster. Can social services help or we have caring for carers or carers association. There's supposed to be someone you can call when say the carer is sick and that leaves the vulnerable person without help. I need to look into this one. I don't suppose your GP has any ideas?

    Lots of love and hugs
    Denise xxx
    when i can think of something profound i will update this.


      AngieCanuck- I totally understand this. For a long time I was in this position and it was both exhausting and scary. Because you have to face the fear that you can't be the mummy you want to be. I want to do everything for my girls that I can possibly do.

      Sadly now that is not possible and while they are a little older, one is still very unwell and vulnerable herself. I simply cannot do things any more. The choice is now taken away and apart from my husband (also working) I have found no one to fill the gap either.

      Those poorly days are awful. But just try to remember it won't last. I'm having a bad week (still in bed) but this time I can't blame the children for my exhaustion.

      Sending hugs xx
      Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

      Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

      Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.


        AngieCanuck It ain't easy or conventional parenting when you have an MND, that's for sure Angie 😟

        My kids were 3 and 5 when I was diagnosed, so they only really know their mummy as being in a wheelchair and me talking through a computer.

        I know with absolute certainty that I am unbelievably fortunate and privileged to have outlived the "3-5 years" usual survival for people with ALS and lived to see them grow up, I acknowledge this every single day to myself.

        I stopped work soon after my diagnosis and my husband worked full time but he brought the kids to school on his way and collected them from after school on his way home.

        It's fair to say that my parents, brother and sister in law and a few close friends were important in helping me out with the school run when needed, doing sleepovers and, on rare occasions, emergency childcare. My kids thankfully were hardly ever ill, so I rarely had them at home due to illness.

        School holidays were challenging, but this is where my lovely support network shone and they often took my kids on day trips with their own brood (I'm glad I didn't have 5 kids 😉) Other days they hung out with me, with or without their friends.

        They had a near-normal childhood - not the one I had in mind for them, that's true, but it was a darn sight better than many, many other kids' lives, and the one thing they never lost out on was love.

        They're now 18 and 20 and, do you know what, they turned out OK and, just like other parents, you can only do your best....

        I wish you well Angie and hope you both recover from your illnesses.

        Love Ellie 🤗🤗😘😘

        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.