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  • Heather R
    Hi Jo, welcome, thank you for sharing this with us, it sounds heartbreaking to see your dad like this, yet you are respecting his wishes. Won't have helped matters that he's not found any medication effective. Presumably he's rejecting help from local team, neurology, hospice, etc? If he's been sociable person, losing his voice must be so hard, and presumably he might struggle with using an app to speak (I do!)
    Have you been offered any support for carers from social services or ohs services? Carer's charities? From MNDA? Hospice? I can imagine this is extremely hard to cope with on your own, as well as business and children. I'm sure you'll get some helpful suggestions on here. Love, Heather x

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  • Ellie
    Oh Jojo I feel for you, I truly do - it much be so heartbreaking for you to see your beloved dad go downhill like this, I'm so sorry.

    Has your dad any support from palliative care or his hospice? If he doesn't, I think that he should be referred - hospices offer services to those of us with life limiting conditions and to family members.

    He can get a collar to support his head from his OT/Physiotherapist, or through his hospice.

    Thank you for posting and you're not alone any more Jo, we're here for you.

    Sending you a big hug this evening.

    Love Ellie.

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  • Jojo
    started a topic Struggling


    Hi, first post!

    My dad was diagnosed in May last year with Bulbar MND. His speech is almost gone now, I can just make out the odd word, his drooling & saliva management isn’t great, he’s tried every medication he can including Botox injections but nothing helps. He won’t eat in front of me anymore but I know it takes him about an hour & a half to eat a meal & he coughs & chokes his way through it. He drinks with added thickener but again it is a struggle for him. The muscles in his neck have weakened so his chin is almost on his chest & he gets pain & headaches. He has refused any intervention, no peg, no cough assist, no breathing aids. I respect his wishes.
    I am caring for him by myself while trying to run my business & care for my two children. Just recently dad has started to decline mentally & physically, he’s lost weight, doesn’t shave & his clothes are always dirty due to him coughing & choking on food & drink. He was always such a proud man & took care in his appearance it’s breaking my heart to see him like this.
    He was diagnosed mid pandemic so he was completely isolated, except from me, it feels like he’s missed out on enjoying these last months while he still could. He was very sociable, he enjoyed dancing, bowling, games nights & bridge. Obviously now he’s unable to participate.
    He was struggling with his memory before he was diagnosed & now the MND has made it worse, he gets confused & forgets things we talked about 5 minutes before. He often asks me if his speech will get better & if there’s anything that can be done about MND. Thats a very difficult conversation to have once but to have to repeatedly tell my dad that there is no cure & things will only get worse & then to see the look on his face, it’s devastating & I'm struggling.
    Sorry for the long post but I just needed to get it out there to others who understand.
    Jo x