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    Hi Lynne

    We are still hoping he will change his mind about a PEG. The problem is my Dad is saying I'm not ready for that yet. I had to tell him today you need it sooner rather than later. Also that he doesn't have to use it just yet. I couldn't bring myself to say it may become too late. The main thing I think is that he doesn't want any kind of stay in hospital. It's hard because I don't want to take control of his decisions.

    Dad hasn't seen the breathing team yet. He has had a letter that I've seen on his patient access to say he doesn't need an appointment yet. We are seeing the neurologist soon so I shall make a note of everything to take with us.

    I completley agree about the stick but my stubborn Dad won't entertain the walker. Got to start somewhere right.

    Thanks Lynne xx

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      Oh dear. A stubborn dad indeed. Good that his neurology appointment is on the horizon. Love 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.

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        Hello everyone

        Very sadly my Dad died yesterday. I am devastated beyond belief.

        Much love to you all and thank you for your help.

        🀍🀍🀍🀍🀍

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          My condolences, he doesn't have to suffer anymore and is in a better place. I look forward to meeting him. πŸ™πŸ•―οΈxx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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            Exactly Matthew. It is what my Dad wanted. It just happened so quickly xx

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              Sorry for your loss Catherine but like Matt I'm pleased he's out of his distress. xx

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                I am so sorry to hear that your lovely Dad has died, Catherine - I know you wouldn't have wanted him to linger on in increasing discomfort.

                Heartfelt condolences to you, your family and to your Dad's large extended family too.

                I'll raise a virtual pint of Guinness and a Jameson chaser in his honour!

                Sending you love and strength,
                Ellie xx
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                ​

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                  Daught21 so sorry to hear of you're very sad loss. Reading your posts it was always clear your lovely dad was determined to do things his way....not easy for those grieving...but the essence of the man.
                  Look after yourselves in this most difficult time πŸ™ xx
                  Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                    Hi everyone thank you for all your kind words πŸ’•πŸ’• You truly are all amazing 🀍🀍
                    I've realised I've been jumping onto different posts to explain so wanted to post on this. I just don't want to upset anyone.

                    I was with my Dad last Thursday (2nd Sept). He seemed much the same. He did use his inhaler (construction induced) and I asked him if he was struggling breathing and he said no. I left that evening πŸ˜ͺ

                    Next morning I called my Dad as normal when I got up. No answer. I then had a call from Age UK about his AA allowance and forgot about not being able to speak to my Dad. That call took 1.5 hours. 10 mins after the call my Dad phoned me. Could hardly speak. Said he felt really unwell. I raced over. He was still in bed. Usually gets up at 6am!! Went to see him and he couldn't breath. Called 999. My Dad's worst fears came true. He went in and never came out!!

                    I was hoping he had and infection. But no!! Consultant came in and had to call my Dad's MND nurse. His diaphragm/breathing muscles had completely wasted away.

                    There is alot of frustration and sadness that has been had!! Luckily my poor Dad wasn't aware (I hope). I was trying to get him home/to a hospice from the get go. As is transpired he was so unwell it ended up where we didn't want to move him and just let him go peacefully. He was very comfortable and peaceful at the end and that is what I cling onto.

                    I have since spoken to my Dad's MND nurse where I have managed to feedback alot of things. Mainly the staff at the hosp didn't appear to "know" much about MND. In all intense and purposes I could have told them more. Also the hospice situation. No beds. Looking back he was never signposted to hospice care. I believe its because the MND nurse didn't think he was "there yet". I've spoken at length the fact my Dad must have had breathing problems before. Due to the nurse seeing him on the Wed and no indication of such, Dad walking around etc it was deemed it can happen at the click of the fingers! It has been spoken about to the consultant/team.

                    I conclude the fact that this is (I'm sure) what my beautiful Dad wanted. He couldn't deal with anything changing in his body and he'd just had enough!

                    Rest in Peace - my amazing, beautiful Dad Bernie xxxxxxxxx

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                      Also to add our local Catholic Priest managed to get to see me Dad and we've taken great comfort in that 🀍🀍

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                        Let it all out. We are here for you.
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                          Late to read this, so sorry Daught21, for you and your family, RIP x
                          Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                          Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

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                            Sorry for the loss of your lovely dad so quickly. RIP Bernie. Love 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.

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                              RIP Bernie - weren't the luckiest Dad to have had a daughter like Catherine in your life. xx
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              ​

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                                Oh Catherine, I am so very sorry to hear of the loss of your beloved Dad,

                                Thinking of you and your family and wishing you strength.
                                Love Debbie x

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