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    My dad very poorly

    Hi everyone

    my dad who has declined quite a lot in the last few months, was at home using a niv only at night and still talking although weaker voice, he took a turn for the worse on Friday, his sats kept dropping to about 70, so we put him on the breathing machine whilst phoning the gp, 111 etc who said some one will call us back, whilst we were waiting my mum was moving his machine and it turned off very briefly, his sats went down to 48! I called an ambulance, whilst waiting they did go up to about 90 once the machine started again, and they were only that low for a few seconds, but honestly so frightening. Anyway this was Friday afternoon, he’s in hospital and is very weak using the cpap machine, they can’t really take him off as his sats drop. We are just waiting for blood cultures to come back to see if he has an infection. His blood did show slight abnormalities indicating an infection hence the blood cultures, so he is currently having broad spectrum antibiotics whilst waiting. They have said it could be an infection or just the progress of this disease, however my question is, how would he decline so quickly in a matter of hours if it was disease progression? Anyone else had similar situation with an infection and was well enough to come home again? I’m just so worried and so devastated by this disease. I just want him home and take him out in his garden. I’m terrified he won’t get home. Yesterday he kept saying for me to get him home, and I promised him I will as soon as I can. I feel guilty, what if I can’t keep that promise. I just wanted him to have hope. I’m hoping he’ll bounce back, and go home and have all his grandchildren around him. I can’t sleep knowing he is in that hospital on his own, my heart is so broken, I would appreciate any advice or words of comfort, my poor mum is beside herself! Sorry for such a long post and any spelling mistakes, but I can’t find my glasses anywhere and can hardly see what I’m writing! Thank you xx Jody

    #2
    Dear Jody. Unfortunately I cannot answer any of your questions but just want to say you and your mum are in my thoughts and I send you both a big hug

    Richard
    Richard

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      #3
      I'm sorry to say this but perhaps it is time to let your Dad decide where he wants to be at near the end. Personally I do not wish to die in a Hospital.
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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        #4
        Thank you for your replies xx I want him to be home desperately, and I did speak to the doctors about that on Friday but they said as they don’t know if it is an infection yet that they couldn’t make a plan. I will speak to them today though, I suppose we are just hoping that new antibiotics will turn the situation around and dad said yesterday that he is happy to wait too. What ever answers we get today though, I think it’s really time tto get him home as soon as possible. Thank you again xx

        Comment


          #5
          Don't forget the doctors cannot force you to make a decision. They think they can but they can't. Be Strong x
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

          Comment


            #6
            Jody123 hope you're dad improves today & gets home...sorry I can't comment on his overall experience as I don't have the knowledge.
            I hope also your local hospice can offer advice & support.
            Take care
            🙏
            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


              #7
              Hi Jody,
              yes wise to find out what caused sudden decline.
              When your dad can get home maybe the hospice team can offer support at home to him and your mom.?
              My hospice team have assured me they can support people with MND in the end stage at home.
              My suggestion would be to make sure support is made available on discharge and any equipment needed too.
              Changes in breathing are scary so you / dad need to know how to respond should this occur again.
              Having had 11 nights in hospital in June I couldn’t wait to get home and knew I had the hospice team ready to follow me up which they did do well.
              Hope your dad is soon able to return home to his garden and family.
              Best wishes
              Mary

              Comment


                #8
                So sorry you have to watch your Dad like this, it must be scary. I hope he can get home soon and into the garden. Take care of yourself.

                Comment


                  #9
                  Originally posted by Jody123 View Post
                  We are just waiting for blood cultures to come back to see if he has an infection.
                  That's the most pressing thing Jody, you need those results before making any decision, but hospice at home/community palliative nursing is definitely what your dad wants and which should be available to him when needed.

                  He might need a chest X-ray to check for pnemonia or infection, or a UTI is often the culprit, so IV antibiotics will help.

                  One thing: you said he's on CPAP - I hope that's just a mistake and that he's actually on BiPAP.

                  Fingers crossed it's 'just' an infection.

                  Big hug to you.

                  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.

                  Comment


                    #10
                    I’m really sorry about your dad’s situation. I hope that he improves sufficiently to be sent home to be with his family. Take care, 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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                      #11
                      Thank you for all your replies. My dad died this evening. I am heartbroken. My poor mum has been with him for 56 years, we are all going to be lost without him. He was the most bravest man, he never complained, I’m so proud of him, it was a peaceful end, I held his hand and talked about all my memories and thanked him for the most amazing life he has given me. Thank you to everyone on these forums with your kind replies over the last year. And Ellie, who I messaged privately a few times who gave me advice. You are all wonderful people ❤️

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                        #12
                        Oh Jody, I'm so sorry to hear of your lovely dad's death - heartfelt condolences to the whole family. Thank you for taking the time to post at this painful time.

                        It's of little comfort now I know, but I'm glad the end was quick for him and for your family too - I mean that in a compassionate way.

                        Look after each other in the coming days and weeks.

                        Wishing you strength.

                        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.

                        Comment


                          #13
                          Hi Jody, I am sure you and the family are heartbroken and you have been on an emotional rollercoaster.Hope the loving memories will help you all.Glad your dad had a peaceful end of this life. Sincere condolences to you and your mom.
                          God Bless
                          Mary

                          Comment


                            #14
                            Condolences to you and your Mum, so glad he went peacefully and you were there with him. Virtual hugs........

                            Comment


                              #15
                              Jody I am so so sorry for you, your mum and family. It was good that you were with your dad at the end. I am sending a very big HUG

                              Richard
                              Richard

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