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    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

    #2
    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.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    Comment


      #3
      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
      Diagnosed July 2020, ALS bulbar onset.

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        #4
        Ellie Thank you for your reply & the hug! it means a lot.
        His local hospice won’t see him due to covid, he was receiving a phone or video call every week but now his speech has gone the nurse has said she won’t get in touch anymore she’s just left it with us to get in touch with her if we need her.
        He doesn’t want a collar. He’s always been very independent & I think he thinks if he takes any help he’s defeated.

        Thanks again for reaching out x

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          #5
          Heather R Thanks for your reply.
          We are in touch with neurology, speech therapist, OT, dietician, respiratory physio but as he won’t accept any intervention there isn’t very much they can do to help him.
          He was given an iPad to help with speaking but sent it back, I think because of his memory problems he can’t remember how to use the equipment. He is still able to write but again due to his memory he is forgetting how to spell words so it takes me a while sometimes to work out what he’s trying to tell me which then causes him more frustration!
          Ive been told by the hospice I can phone anytime if I need to speak to someone but other than that, nothing. We did have contact with a visitor through MNDA who said he would like to check in with me as well as dad, at least a couple of times a month but he visited dad once & we haven’t heard from him since.
          I thought I was coping ok, I’m good at just getting on with things but it’s hit me all at once!
          Jo x

          Comment


            #6
            Jojo it is heartbreaking to read what you are going through on your own. The MND Association has a really good practical support network. If you contact the connect team either via a PM on this forum or telephone using the the number on the web page and ask to be put in touch with your local area support coordinator they should be able to help with what appears to be an unacceptable approach from the hospice. It is also possible to link you up with an Association Visitor who will work with you on a one to one basis.

            Please give it some thought. You shouldn’t have to face this on your own.

            Comment


              #7
              Jojo welcome & sorry to hear about your dad's diagnosis. I echo what others have said either refer yourself or ask the GP to refer you to Social Services...for you a carers assessment....and if your dad agrees a Care Act Assessment for him. They will also assess his mental capacity regarding declining social care support. Of course people can decline help but your post suggests he has some memory impairment.
              Same goes for the health professionals are they sure dad is able to make a capacitated decision to decline their support?
              At least get a carers assessment👍
              Good luck....take care👍
              Linda B
              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

              Comment


                #8
                JoJo, that’s awful for you and your dad. You’ve had great advice here already so all I want to say is that we’re here for you, love and hugs 🤗, Lynne x
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                I'm staying positive and taking each day as it comes.

                Comment


                  #9
                  Thank you all for your reply’s, it means a lot ❤️
                  I will try & get a little extra support for myself.
                  My dad has & continues to be very stubborn! Unfortunately he doesn’t see that his refusal for help impacts me but I will keep suggesting ways in which all the services can help him xx

                  Comment


                    #10
                    Hey JoJo and welcome. Stubbornness is often a cover for denial. We all go through it at some degree. Give it a little time and try and celebrate the little wins. We are always here for you. 🤗😁😚💗xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                    Comment


                      #11
                      Hi Jo
                      what an awful situation.Like Linda B suggested it’s worth asking for a mental capacity assessment to be carried out by a health professional or social worker.
                      I would suggest the hospice again as sounds like your dad is deteriorating and may need input for medication and symptom control.
                      Poor nutrition, coughing and pain will be having a huge impact on your dads wellbeing.
                      Presume there is no other support for your dad practically other than yourself.
                      f.
                      I am linked to my local hospice and they have continued to visit all through covid.There Will also be a community palliative care team accessed by your GP.
                      I wouldn’t waste time and ring the hospice again!

                      Hope you too get support as it’s a huge thing to try and work, be sole carer and be there for your own family unit.
                      Best wishes
                      Mary x

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                        #12
                        Thank you both for your messages ❤️
                        Yes dads had a mental capacity assessment, all fine & yes there is only me.
                        I will go back to the hospice & try for more support xx

                        Comment


                          #13
                          Jojo I'm so glad you posted Jo, even though I'm sure it wasn't easy to pour your heart out to us 'strangers' 😏

                          This is definitely not something to go through on your own! 🤗🤗😘
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          Comment


                            #14
                            Hi Jojo. You being there for him will help a lot. T​​he way I cope is by telling myself that perhaps a new treatment is around the corner. xx

                            Comment


                              #15
                              Jojo

                              Sorry you are going through this.

                              I am caring alone for my husband.

                              I made it clear to him that the 3 hours of Respite from Hospice at Home is for ME. Once a week at random times.

                              Not all areas have this.

                              As I can't leave him for very long as he is immobile and can't use his hands. Just getting to the shops etc.

                              His chin is on his chest TOO, we got a neck brace which helps (only if he is clean shaven - which is another issue)

                              Get in touch with Your GP, you are a carer and need assistance in your own right.
                              There is Carer Trusts for example.
                              I also get a weekly support phone call.

                              It is hard when they are independant minded and stubborn. but it other ways it is helpful.

                              It is so sad that the Pandemic has robbed us of time to enjoy when they were more physically able.

                              Support on here is wonderful.

                              But if you are needing to talk to someone, I found The Samaritians great for a human voice (a few years ago) at the end of the phone,.
                              You have to explain the

                              Both my parents have dementia (you can get mild cognative impairment, due to stress and illness, as well)

                              My husband calls it Brain Fog, at the end of the day when he is tired.

                              Keep in touch

                              There is always someone about online.

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