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    Hospice

    Made contact with the hospice my GP referred me to, at my request. I sort of put it off....well not sort of...I did. Even though I'm well use to working with colleagues in that setting this is now ME....and I think I've delayed the contact to somehow delay the realisation that I'm planning for MY own end of life. Anyway good to know I'll have the hospice community team supporting me with 24/7 availability. Home visit next.
    I'll be pleased to access some complimentary therapies tooπŸ‘πŸŽ‰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.​​​​​​

    #2
    I know how hard it was to make that first contact Linda but you won't regret it. My hospice is my lifeline (pun intended) and I wouldn't be without my palliative care nurses.

    Do it on your own terms - dip in and out, if that's what you want for now.

    Big hug for you today πŸ€—

    ​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
      My wife Caroline had her first meeting with our local hospice today, it was OK, no awkward questions. By the end of it we had received lots of useful advice and sources of additional information. No β€˜clinical’ questions just genuine empathy and kind words.
      Husband and carer to my wonderful wife diagnosed with ALS Oct 20.

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        #4
        That's good to hear Martin, they'll take good care of you both. 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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          #5
          Really is going to be a great source of support...just knowing I could (or friend/family) ring to speak to someone if necessary at 3am is amazing. It's another tick on the list....and yes Ellie I probably will dip in and out. MartinB sounds like a very positive experience for you bothπŸ•―πŸ•―

          Thanks guysπŸ’‹
          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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            #6
            Hi Linda ,the local hospice team’s support has enabled my husband Steve and myself to feel reassured that they will be there to support us.They keep in weekly support by phone but also one of them comes to see me when I feel I need face to face support.
            For us it was important we knew where we could get ongoing advise and support as my health needs increase.
            I nearly had a dicky fit when the neurologist said when he diagnosed me with MND that he would refer me to the local hospice.It seemed to me at the time that I must be at end of life stage .
            As it happens 14 months post diagnosis the team is who I contact when I get new symptoms etc.and need advise.
            Really hope Linda you feel reassured when you meet members of the palliative care team.
            Best wishes
            Mary

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              #7
              Mary C thanks for that positive experience for you. I think sadly hospice care is little understood until needed....which is a shame. For me as soon as the consultant gave me the MND diagnosis I knew I had to plan end of life care and although the best people to support me with that are the hospice team I also know they are much more than that. I shall make use of them Im sure once they are fully open (limited service due to covid). Looking forward to that....some nice relaxing therapies.
              One of my best friend was the social worker at my local hospice for a few years so I had some info about their service. I also still work and we link into hospice care all the time ....although it's a bit of a role reversal for me to be the client!
              I'm sure I will feel reassured when I meet the team though...and for my friend- who also will care for me- I know the hospice team will be there for her...which is important for me.
              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.​​​​​​

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                #8
                I was majorly sceptical after the first visit from the Hospice team but subsequent visits allayed my initial fears. They know their onions πŸ‘πŸ˜†πŸ˜šπŸ˜˜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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                  #9
                  Hi Matthew, I am glad you are more confident about the hospice support for you.
                  Best wishes
                  Mary

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                    #10
                    Linda that sounds brilliant that you’ve been part of the team already and that you’ll be getting care from friends. 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
                      matthew55 I knew you'd see sense, eventually... 😍😍

                      To be fair though, it's not a concept that's easily embraced unless you know exactly what is on offer, and realise that you're not being seen as 'actively dying'.

                      😘😘
                      ​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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                        #12
                        'To be fair though, it's not a concept that's easily embraced unless you know exactly what is on offer, and realise that you're not being seen as 'actively dying'.

                        That's true Ellie the team kept calling me and I missed their calls several times...when we spoke the nurse said well we don't like to leave a message saying it's the hospice team as some people fear the title. Which is understandable until you learn more.

                        @Lynn K yes I'm glad I have some insight into support provided...although it's very different as a patient.

                        Anyway plan for the worst & hope for the bestπŸ™
                        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
                          It was more that the doctor was a hippie and the nurses simply vacant. πŸ˜‰πŸ˜†πŸ˜„πŸ˜xx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                          Comment


                            #14
                            Originally posted by matthew55 View Post
                            the doctor was a hippie and the nurses simply vacant.
                            At least we now know who was after your herbs πŸ₯΄πŸ₯΄πŸ€­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


                              #15
                              I was referred by my GP who visits or rings weekly- I know I am lucky with this . The Pallative care nurse was very informative given a choice I would rather die at home.
                              I did find the discussion on pain relief quite vague and it would appear I need to express a wish to come off NIV then I would be given something to make me comfortable.
                              However it was all very vague and I still have Dignitas as my escape plan there is something comforting knowing my death will be quick and painless .

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