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Carers taking time off work

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    Carers taking time off work

    Good Morning all.
    I am currently off work caring full time for my mum who has advanced MND.
    My gp signed me off on June 20th and my fit for work note runs out on August 18th.
    The thought of going back to work leaves me in a spin. We know mum has only got less than six months with us but i'm terrified of losing my job and a pension I've had for over 25 years. I need to be with mum and the guilt is eating me apart. Work have been extremely supportive so far but I'm genuinely torn.

    I’ve been signed off since February. Sadly had to give my notice but I’m signed off till end of August. (I’m a Teacher so notice around term time). I understand that you can be signed off upto a year in certain circumstances. You shouldn’t be penalised by your employer in this difficult time.


      Hi MamaH69 it is a toughie and I can understand your dilemma. Obviously I don’t know your mum but I’m guessing like mum’s the world over she wants you to have the best life possible.

      Have you thought about having an honest talk with your employer. As you say they are being supportive so would a career break be a possibility or maybe some kind of flexible working / part time hours that wouldn’t impact your future security but give you time with your mum.


        MamaH69 A warm welcome to the forum, sorry we meet in such circumstances 😟

        I can only give you my personal take on your situation as to what I would want my own kids to do, no matter their age.

        As a mother in late stage ALS/MND, I don't want my illness to clip their wings whatsoever: I want them to realise their full potential without having to think of me and, in doing that, they'll have made me happy.

        I know it's a no-win decision for you to make and I think it's a good idea to have a (difficult) heart-to-heart with your mum as, no doubt she will also feel guilty if you lose your job and pension.

        It's also worth mentioning that by returning to work, your relationship will revert to more of a mother-daughter relationship, leaving you to spend time together not solely focused on performing 'caring' tasks.

        Best to you both.

        Love Ellie xx

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


          Sorry to hear of the difficult circumstances. It's so hard watching someone go through this horrible illness.

          I totally get what Ellie says from a mums perspective but I know that I have to do everything I can to support my dad as he progresses with MND. I know that when the time comes I won't be able to cope with looking after dad and working so will be going to the doctor to look to be signed off (a rare occurrence for me, I work in HR and am usually trying to help people back to work!)

          I was going to make the same suggestions as Bowler about reducing hours temporarily, work from home flexibility and a career break /extended leave. Have you looked at what sick pay you can recieve? If you've been there for 25 years I would hope that the provision would be reasonable and your employer would be flexible recognising the difficult circumstances.

          No matter what I'm sure your mum would not want you to feel guilty and that she had appreciated all the support you've given her.


            I went off sick from work when my husband was initially diagnosed. I did feel a fraud for a while as I wasn't the one that was ill, but my counsellor put this into perspective by asking me if I could function and perform at work as I had done previously which I honestly couldn't, not just due to caring responsibilities but because my head was all over the place. So I had 12 months off sick. I am fortunate that I work for the NHS (In a non clinical role) and my employers were very understanding and supportive. I had to consider my options and consider husbands opinion.

            He had very strong opinions about me still having some semblance of normality and indeed a future and career after he has gone. ( tough discussions)

            I considered resigning altogether as I am too young to retire, I considered taking a career break ( but you have to give some sort of indication about how long you want)

            My decision was helped by us being lucky enough to find two very good PA's who can be trusted to care for him in my absence.

            My husband was very keen on us getting back to some sort of husband / wife relationship rather than carer and patient so after weighing everything up we decided that I should go back to work on a part time basis. Albeit working from home so I am here if needed.

            I must admit that some days are really tough with juggling, after all caring isn't something you do in prescribed hours, and it is very difficult to work when I've been up around eight times during the night. But at the moment it is working.

            My full time role is being kept open for when I need it and my working hours are flexible. I carried most of my annual leave over from last year and there is an agreement that I may need to use annual leave at very short notice to cover any crisis that may emerge.

            My head is in a better place as I have got an element of normality back, I am maintaining an income (albeit half of our usual income) but that said we don't have a social life anymore so need less money.

            I appreciate that I am lucky to have such good employers and a husband who considers my future.

            My employers wanted to retain my 31 years experience.

            Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

            Sense of humour intact throughout.

            Sadly passed away peacefully 2/9/22



              Please talk it through with your employers, you might be surprised by them.

              My husband only got his official diagnosis on 01/08, but we had had a discussion and come to this conclusion due to symptoms etc (consultant didn't want to tell him until he was 100% which is understandable). I had been working from home 3 days a week and in the office for a couple of days, and one day in June, when I was in the office, one of the staff asked if I was ok, and I broke down. My team leader (along with her team leader) took me out of the office and told me to go home and get signed off. They had been waiting for it to happen since March (when my husband was first admitted to hospital). My concentration was all over the place and I couldn't relax knowing he was at home and what I might find when I got home.

              I phoned to speak to a team leader at work the following week to give an update to which they asked me why I was calling them, when I should be looking after my husband and not worrying about work. A few weeks later they decided that they will call me once a week to see how I am doing and to see if I need help with anything and if they can do anything for me.

              I have to admit work have been great, and I feel lucky and they are there for me.


              Hilary xx