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Hi there. 1st post on the forum as a carer for mother

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    Hi there. 1st post on the forum as a carer for mother

    Hi all. After a couple of Covid affected years in which my mom's symptoms were examined in isolation (sometimes up to six months in between consultations and tests) she was finally given a MND diagnosis in January 2022. It was a shock, as we hadn't thought of the condition. However, looking back at what was happening to her and what we know now, the clues were there.
    Mom went home after hospital. Her condition is deteriorating rapidly now. Whilst there are lots of different teams and services involved, MND nurses, OT, Physiotherapists, Diet & Nutrition, District Nurses, speech and language (to name but a few) I have found that i have been left to constantly co-ordinate calls and help for mom, sometimes even between the support services themselves. They do have a tendency to work in isolation and independent of each other. It has been frustrating. We don't have a social worker as they left us when they established that mom was a self funder for her home care. Does anybody else share my frustrations? I have a full time job, and if I have got an additional one planning and chasing up the help for wonderful as it is!!

    I do know what you mean, I seem to spend a ridiculous amount of time chasing problems with prescriptions, and spent hours last week trying to find a local chemist that had the right Baclofen in stock.

    In terms of health services we are lucky to have a very proactive neuro OT and hospice who do a lot of the coordinating.

    Please consider CHC assessment (I know it is a nightmare for some!) this was put forward by social care - probably prioritised so that they wouldn't have to fund anymore, but if eligible means carers are paid for.

    I initially took a year off work as couldn't fit it all in, and now work part time as caring takes time.

    Good luck and hope you find a way through. x
    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


      Hi. Thank you so much for the response. Yes, we are in the process of a second application for CHC. 1st time it was declined? I may have to start a new post to talk about the CHC application process! As you have indicated, it is time consuming and difficult. Thank you again, and best wishes to you and your husband. x


        Neal36 A warm welcome to the forum Neal, so sorry about your mum's diagnosis.

        Because of her Covid-delayed diagnosis, she (and you) are probably still playing catch-up...

        Is this a completely new CHC application, not an appeal on the refusal?

        Yes, it does often happen that community services don't talk to each other, it's not that unusual 😟

        There's a mine of information, love, laughs and support available on the forum.

        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 about your mum's illness and diagnosis. I found the first 9 months after diagnosis really challenging with so many different things to deal with and different medical people. My dad has bulbar onset so I deal with all his phone calls, medications and go to medical appointments while living 2 hours away and it is a lot.

          Dad's community team seem to have a shared system where they can see each others updates and info from the GP/hospital. Our weak link seems to be our neurologist who doesn't seem to read letters even when they are sent to her.

          While it is a lot to balance, my dad still has his mobility for now and personally I feel like i can do a little something to help him through having little tasks to do. I hate feeling useless.


            @Elliie Hi there. We got refused CHC in March. I have felt that mom has deteriorated since then, so asked the MND nurse to reapply. i was under the impression that it needed to be a new application. Are you aware if we could have appealed the decision then, rather than a new application? Thanks again x


              Claireflo. Hi there..I am sure yourr dad appreciates everything you do for him, especially with the distance between you that you have described. 👍. It sounds like your community team have got a good system. I would concur with you that the first few months after my moms diagnosis have been overwhelming in terms of the services introducing themselves. As i said in an earlier post after the initial appointments, i have become frustrated that there doesn't seem to be one point of contact I can go to in order to arrange things. I feel guilty about chasing up progress with different teams.


                Originally posted by Neal36 View Post
                Are you aware if we could have appealed the decision then, rather than a new application?
                Yes, every refusal can be appealed but that's by the by now - bear it in mind if it happens this time.

                A CHC assessment is not the time for bravado and stoicism: it's how your mom is on her worst day, not on her best day.

                Do some research - there is lots of info out there, including Beacon and on this forum - big issue is there's a minimum fill of 4 characters in the search box, so you can't search for CHC, but you'll get some results searching for 'Continuing'.

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


                  Thanks, he does appreciate it and I think he knows it makes me feel useful so finds an extra job or two for me to do!

                  My dad's progress has tended to be such that there's been one primary person (first speech and language, then physio and moving towards respiratory). The speech therapist was amazing, even when it wasn't her area she sorted things out, made referrals and gave me contact details so I always knew I had someone to go to when I didn't know where to go.

                  We were supposed to have an MND coordinator who would be the one key person to go to who would then link in with the relevant specialism. The post was vacant for 9 months and now there's someone in post who couldn't help with dad's mucus issue but has said to get in touch if we need to. To be honest I don't know what he can help with, now I've got my contacts in place I find it better to go to them directly.

                  Try not to feel guilty about chasing up help for your mum, all you are trying to do is your best to ensure she has the best care. No one can criticise you for that.


                    Hello Neal36 and welcome. I am sorry to read of your mother’s diagnosis. I understand how challenging it is balancing the demands alongside a full-time job as I cared for my mother, who was diagnosed in February of this year. Having a second job is exactly how I described it too. You never know what the day will bring and it can be very stressful. I don’t have any other family so it all fell to me to do though as you say, it wasn’t that I didn’t want to do it and I was pleased I could as she was a wonderful mother. Ensure you know and understand your rights as an employee e.g. being entitled to Carers’ Leave. I found that being open with my boss and colleagues about mum’s diagnosis and complex health needs, helped when I had to dip in and out of work if something cropped up (which it did, a lot).

                    It helps (and is healthy) to talk about it so I’m pleased you’ve come here as you need to look after your mental and physical health too. Have you had a carers’ assessment? Sadly I found you often have to shout to get what you’re entitled to, otherwise the various agencies think you’re coping and can manage without additional help. I agree that they don’t seem to communicate well. You end up repeating information and sometimes correcting them because they’ve not read notes properly or their admin systems don’t talk to each other. As Ellie said, don’t forget you can appeal the CHC decision (though I am crossing my fingers that you won’t need to) if necessary.

                    Little things like having prescriptions delivered can help ease the load (sorry if this sounds obvious) and means you only need to go to the pharmacy for any non-regular meds e.g. antibiotics.

                    I hope you don’t mind me asking but what does your mum have in terms of equipment, if any?

                    Make sure you and your mum are claiming for any financial assistance you are eligible for. You mention that your mum will self-fund her care. You should still be able to claim Attendance Allowance as this isn’t means-tested. Every little helps, as they say.

                    You do have to push for some things and it’s exhausting. Don’t be afraid to be honest with healthcare providers if you’re finding it tricky. I love my mum with all my heart but it was very demanding and I seemed to be busy every minute of the day. It is also incredibly isolating. This is a great support network and I’m glad you’ve joined x
                    Last edited by Mymothersdaughter; 4 August 2022, 23:13.