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    Hospice visit πŸ’–

    Had an introductory 1st visit with my hospice nurse. Went really well and I was able to discuss my concerns and wishes. Such a refreshing change speaking to someone from that background....really is about what I want ....my views.....my preferences. Of course I knew it would be so but it kinda restored my faith. πŸ™
    Ultimately home or hospice for my final moments....home best but I know that sometimes you do want the reassuring hand of a hospice nurse...so that's a choice for me.
    Nothing was too much trouble for this nurse...and her warmth, humour and kindness oozed out of her quite naturally.
    I said sign me up for everything....mindfulness....and anything else. I'm in πŸ€“
    Lots of referrals too so I can expect lots of phone calls...OT....Physio...Social Worker (I did say don't tell them my profession they'll freak out)
    She's listed some meds I should have in...just in case....and will refer to GP.

    Really good that my dear best friend was here too....so she could talk about her concerns.

    All in all a very good visit...hospice care....fantastic places & people.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.​​​​​​

    #2
    That's 'great' LindaB - who ever thought that a hospice visit would be a 'great' thing for us youngsters πŸ˜πŸ˜„πŸ˜„


    Originally posted by LindaB View Post
    Ultimately home or hospice for my final moments....home best but I know that sometimes you do want the reassuring hand of a hospice nurse...so that's a choice for me.
    You should still be able to get that reassuring hand from a specialist palliative care nurse at home Linda - did the nurse mention this? And that reassuring hand includes the same meds and method of delivery as you would get in the hospice. 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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      #3
      Hi LindaB,
      I had similar experience over a year ago when I first met hospice Ot, nurse.
      They have continued with their support as and when I have needed it .I too had the discussion on where I would like end of life care to be ie home or hospice.The anticipatory drugs are with me and I have met most of the team plus the community palliative care team.
      I was given the contact numbers for the teams that cover day and night which is reassuring in case I need advise or support suddenly at night.
      I wasn’t offered social work referral but don’t think I need that.
      Just sat here thinking where I get help from to date.

      Hospice OT, physio, dietician , nutritionist, pyschologist provides counselling,MNDA befriender/ volunteer, MNDA monthly support group,Community palliative care nurse, SALT,Nutricia ( Advise on RIG)Respiratory nurse, Neurologist, This forum, Catholic priest ,District nurse team( weekly check on RIG).
      Plus informal help from family and friends.

      Feel very blessed to have all this support. A beautiful day and enjoyed relaxing with friends in the garden.
      So glad you too had good experience with the hospice today too.
      Best wishes
      Mary


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        #4
        Sounds good LindaB - in a funny sort of way. x

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          #5
          Originally posted by Ellie View Post
          That's 'great' LindaB - who ever thought that a hospice visit would be a 'great' thing for us youngsters πŸ˜πŸ˜„πŸ˜„



          You should still be able to get that reassuring hand from a specialist palliative care nurse at home Linda - did the nurse mention this? And that reassuring hand includes the same meds and method of delivery as you would get in the hospice. xx
          Hi Ellie I didn't express myself too well....I suppose what I mean is I've know people want to stay home (I agree that should always be an option 100%) however there can be a sense of panic... especially for those people who live alone....and it's ok to change your mind & opt for hospice care. It's fluid and there's no wrong choice.
          Yes agree also meds the same either setting. My choice home....or hospice....not hospital. But that's years away πŸ˜˜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


            #6
            Well done πŸ‘ Linda for facing up to this and getting such reassurance. I found it so hard to talk about and I think the team at the MND clinic realised this so I have had difficult conversations in short bursts...if this makes sense.

            I do feel very supported 😌 even when I keep changing my mind about the interventions which are acceptable to me.

            Love Debbie x

            Comment


              #7
              Deb I think that's how it is for most of us...I only discuss as much as feels right for me...the brilliant thing about talking to someone from the hospice team....they 'get that'...it's all about the person...100%
              It's good to feel supported πŸ˜˜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


                #8
                Originally posted by Deb View Post
                I found it so hard to talk about and I think the team at the MND clinic realised this so I have had difficult conversations in short bursts...if this makes sense.
                It can be a very difficult subject to talk about Debbie so don't apologise for being uncomfortable about it, particularly as it's almost taboo in our society.

                Tbh, if my breathing were largely unaffected, it would seem gratuitous to even warrant an end of life discussion, let alone actually have such a discussion. But for me, as I am now, I take comfort in knowing what's available and, as Linda said, the best people with whom to chat to *if* you ever want to in the future, are palliative care nurse specialists.

                In the meantime 🍸🍸🍸🍸 πŸ€—πŸ€— 😘

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

                ​

                Comment


                  #9
                  Evening all

                  I’d just like to add my two penny worth. From my experience I whole heartedly agree with all the comments around how brilliant our hospice was. After Ann had clearly laid out her wishes the team of girls understood she did not want to know any details. I on the other hand wanted and needed to know every detail of the whole plan up to and including end of life. The girls were brilliant at sensitively checking with Ann from time to time if she had changed her mind about anything. They would also take the time to answer my endless repetitive questions at every stage and when necessary hold my hand and guide me, even at ridiculous times of the night. Truly remarkable group of people

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                    #10
                    Mary C thanks Mary when you write the support down like that it's really amazing. πŸ€—πŸ˜˜
                    Glad you had a lovely day with friends 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.​​​​​​

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                      #11
                      we havent had any contact with the hospice. when does this come about and do they make contact or is it done for us? we have a multi disciplinary on 24th september will that be the time to ask?

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                        #12
                        Morning denise I asked the GP to refer me...but for sure mention at the MDTπŸ‘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.​​​​​​

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                          #13
                          I just looked at the Bury Hospice website. It states that their outreach programs are currently being run by telephone or Microsoft Teams. Also, it needs to be a referral from a health professional for anybody that wants to be considered. I may get in touch with my OT later in the year if Covid is under control so that she can make a referral. 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


                            #14
                            Physio from the hospice came to see me today. Will refer for wheelchair....walking stick...bath board...she had her OT hat on....but also putting together a few excercises.
                            She was lovely....nothing too much trouble.
                            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


                              #15
                              Originally posted by LindaB View Post
                              She was lovely....nothing too much trouble.
                              That's exactly what you need and want! 😘

                              ​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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