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Hospice visit

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    Hospice visit

    We have our first visit from our local hospice next week, not sure what to expect.

    Shauna, as it's the first visit, it is probably a fact finding mission for both parties: they'll tell you and Tracy all about their services and will see how she is doing (any pain, breathing issues, emotions etc) and you both get to ask any questions you might have, so it might be an idea to jot them down beforehand.

    Hospice staff are usually very good at picking up on cues but, if there's anything Tracy would rather not discuss at this stage, perhaps make that known.

    Not all services might be available during Covid times. xx
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


      Thanks Ellie


        Shaun wheadon I echo what Ellie said. My 1st visit from the hospice nurse specialist was for her finding out about me. Little history - medical and personal. Also an opportunity for her to tell me about the team at the hospice and the support available. Time for me to ask questions. Very informal conversation and very relaxed.
        She also attends my GP surgery monthly so a great link there.
        They offer a 24/7 community response...(not emergency) so good to know they are there out of hours.
        It's probably the 1st of lots of chats which is great as it feels 'normal' and gives time to develop good relationships.
        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.​​​​​​


          We were very nervous about my husbands first visit to the hospice, we thought that this meant that they thought he would be dieing sooner rather than later. How wrong we were!

          The hospice philosophy is about "living well" whilst you still can. They soothed a lot of fears/terrors that my husband had following diagnosis. They calmed his thoughts of jumping on a plane to Switzerland (Dignitas) and have treated us both with enormous love and support.

          The diagnosis is still the same, the end point is still the same, but our fears (both his and mine) have been significantly reduced. We have been "taught" by them how to make the most of the good times.

          At the point of diagnosis in May 2020 we felt that our lives were over then. But we have had a bloody good summer. Different to how we wanted it, and under very difficult circumstances with very poor mobility, but we have been on a wheelchair accessible canalboat holiday, and had a lovely family holiday on the coast with our sons and families.

          I am so glad that the hospice took us under their wings and gave us some life back.

          With their help we have put LPA's in place and an ADRT. My husband now feels much more in control of the endthe This has given him much comfort. We can never thank them enough.

          From a carers point of view I know that when the time comes they will be there for both of us and although i am still scared, and it still keeps me awake at night - I am not as scared as I was initially.

          I hope your experience is as good as ours.
          Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

          Sense of humour intact throughout.

          Sadly passed away peacefully 2/9/22


            Hi Michelle,
            I was diagnosed about the same time as your husband in June 2020.The hospice made contact with us very quickly and like you both we had our anxieties.
            Whilst I haven’t been able to go into the local hospice due to covid, the team have continued to come out when needed to offer support.
            We feel reassured that the combination of health professionals including the palliative care team will try to support me to remain at home with the support we need in addition to support we can provide .
            My husband also feels as my husband and main carer that he has a voice and is supported by them too.
            So glad you are continuing to make great memories .
            This forum also is a great source of support.
            Best wishes to you both