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    Palliative Care Nurse

    Had a visit from my nurse today. She is so lovely...something special about people who choose to work in palliative care IMO.
    Anyway I've been feeling nauseous of late (not sure if it's the Riluzole). So we've agree I'll try Metodopramide (not sure of spelling) 10mg half an hour before meals. Changed to Domperidone.
    I'm also going to try a selection of supplement drinks....see which I prefer.
    She will arrange for GP to arrange my covid booster at home.
    I've had some right sided pain in rib area..will continue with panadol but call her if worsens.
    She checked my blood oxygen levels...ok

    She stayed a while and we talked through a few things.
    Peg - we agreed to try all the above before making a decision. She did say she could ask the doctor from the hospice to visit and he would be happy to answer any questions about the process etc. Which I thought quite amazing.
    Anticipatory meds: not needed to have on hand just yet.

    It's a comfort to me to have someone I'm confident in to talk to if I'm worried. She gives me full control in decision making and what's right for me πŸ’™
    Last edited by LindaB; 7 October 2021, 17:40.
    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.​​​​​​

    #2
    Hi LindaB
    glad the nurse gave you confidence to ask the questions about your care needs.
    How are you getting on with NIV
    Best wishes
    Mary

    Comment


      #3
      Originally posted by LindaB View Post
      Had a visit from my nurse today. She is so lovely...something special about people who choose to work in palliative care IMO.
      I second that Linda.

      Every single person I met in the hospice, from the kitchen staff up to the consultants, and the community palliative care specialist nurses, are truly special people.

      Hope your anti-sickness meds greatly improve your eating experience - that nausea must be soul destroying...

      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


        #4
        Originally posted by Mary C View Post
        Hi LindaB
        glad the nurse gave you confidence to ask the questions about your care needs.
        How are you getting on with NIV
        Best wishes
        Mary
        Yes Mary I'm getting on ok with NIV....using all night and sleeping well. So 9 ish hours. Only thing I've noticed is that it makes me 'windy' if you get my meaning...thank goodness I sleep aloneπŸ˜‚πŸ˜‚
        Have a respiratory appointment this month and I'm hoping there may be some improvement in readings.
        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


          #5
          So glad you found the experience helpful and supportive LindaB It's good to know the help is there and yes they are very special people... but then so are you.

          Love Debbie xπŸ˜˜πŸ€—

          Comment


            #6
            Originally posted by LindaB View Post
            I've noticed is that it makes me 'windy' ...
            Have a respiratory appointment this month
            If the respiratory team don't know of that side effect, tell them, your settings may need a tweak. xx

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

            ​

            Comment


              #7
              LindaB sorry to hear you're not feeling well. Linda, but good to hear you're in good hands x
              Diagnosed July 2020, ALS bulbar onset.

              Comment


                #8
                Originally posted by Heather R View Post
                LindaB sorry to hear you're not feeling well. Linda, but good to hear you're in good hands x
                Thanks Heather...just queasy at times which isn't great when you're trying to keep a high calorie intake...but hopefully will get this sorted out....😘
                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


                  #9
                  Had a visit today by a social worker (hospice). A very new experience for me (I bet he was a little nervous knowing my profession). Anyway he was very good...listened....gave just the right amount of advice....very approachable. Created a safe talking space which is good on a first meeting. I give him 10/10
                  ​​​​​​Nice person.πŸ˜‡
                  So yes I now have my very own social worker πŸ‘πŸ˜‡
                  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


                    #10
                    LindaB
                    Yes it’s funny you now have your own social worker.Did you learn anything you didn’t already know?My sleeping has become disturbed due to dry mouth..always waking up lately for sips of water.( tried, saliva gels, sprays, pastilles).I do have a hour nap in the day when I can as get tired mid afternoon.
                    Best wishes
                    Mary

                    Comment


                      #11
                      LindaB you know how to assess a social worker! Great that you got a first class one! Xx
                      Diagnosed July 2020, ALS bulbar onset.

                      Comment


                        #12
                        Originally posted by Mary C View Post
                        LindaB
                        Yes it’s funny you now have your own social worker.Did you learn anything you didn’t already know?My sleeping has become disturbed due to dry mouth..always waking up lately for sips of water.( tried, saliva gels, sprays, pastilles).I do have a hour nap in the day when I can as get tired mid afternoon.
                        Best wishes
                        Mary
                        Well he did remind me of important things to consider. Yes we know about them but sometimes good to be reminded. Things like LPOA which I've started but not finished....so I need to do that. I know that we're not likely to lose mental capacity with MND but maybe difficulty expressing wishes. Also regarding a will....maybe complete a temporary one whilst waiting for a more formal one (using a solicitor) I thought that a good idea.
                        Sorry you're getting disturbed sleep....is it because you're mouth opens as you sleep do you think? That's what happened to me.
                        Hope you can get that sorted. πŸ€—πŸ’‹
                        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


                          #13
                          Originally posted by Heather R View Post
                          LindaB you know how to assess a social worker! Great that you got a first class one! Xx
                          Yes if it was an interview he got the job. πŸ‘πŸ’‹
                          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


                            #14
                            Hi Mary

                            Does your NIV have a humidifier - basically a reservoir of water over which the air passes?

                            I find that plus lip salve works for many hours overnight.

                            Doug

                            Comment


                              #15
                              I got LPOA a few years ago, not thinking I would ever need it, but because it seemed like a good idea to get done. From what I read, it would be easier if needed in the future to give my children the power now , (trusting them absolutely!). Now it’s proved very useful with all the great complexities of my adaptations and other things, for my son to take control of this without anyone being able to question, otherwise I think I would have found it a total nightmare x
                              Diagnosed July 2020, ALS bulbar onset.

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