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End of life, immobility.

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  • Ellie
    replied
    That must be awful for you Gwynie.

    I have the luxury of not being claustrophobic, so it doesn’t even cross my mind that I’m trapped, but I can understand how you would see the situation differently.

    How do you feel when you sit in a wheelchair, not regarding the people around you (which must be even worse for you as we’re in a seated position), but does actually sitting in the chair bring on fear?

    Maybe start saving for one of those fancy Genie wheelchairs which can go into a standing position 😊

    I hope it’s some time away yet and, trite as this is to say, try not to worry about the future.

    Love Ellie.

    Leave a comment:


  • Mary C
    replied
    Hi Gwynie
    Do you have any support from a hospice team?I find it useful to discuss with a nurse in the palliative care team how I feel as things arise.I am also fortunate enough to have via NHS a psychologist who does zoom meetings with me about every 5-6 weeks.This again enables me to talk about any fears I might have and come up with strategies to cope.

    On this forum are many people who are immobile and have adapted as it happened with the frustrations and losses they must have felt too..Hopefully some people will comment on here and offer their support and maybe tell you how they adapted.Not suggesting it’s easy .

    My mobility sounds roughly like yours in that I can walk a bit with a frame but wheelchair transfers by evening and wheelchair outdoors.Immobility for me has been a gradual thing.
    Started using stick and stairlift and then progressed to through floor lift and Zimmer frame.Then came manual wheelchair and just had powered chair.

    Dont know if you have a powered chair yet?Have you considered or already done voice recordings .?
    First and foremost it sounds Gwynne like you need to talk your fears through.I know from my experience that what works for me is talking therapy and the ongoing support I get from the hospice team.
    From early on after diagnosis in June 2020 it helped me to fill in my respect form and ensure the hospice team knew my wishes for my end of life care.I also felt more in control by doing that.My husband too found it helped him come to terms and feel confident as throughout the last year whenever issues have arose someone from the hospice team was quick to respond and listen to how we were feeling.They also discussed various ways to address issues whether physical or emotional as they occurred.

    Fear is crippling in itself and can really take over people’s thoughts and ruin getting the best out of today.
    I really hope you get the opportunity soon to talk through your fears.Do come back on the forum as it’s a great place for getting support in addition to other sources of support.
    Best wishes
    Mary

    Leave a comment:


  • Gwynie
    started a topic End of life, immobility.

    End of life, immobility.

    Hi,

    I am quite claustrophobic, I don't like being in tightly packed crowds, I am okay in lifts as long as they aren't too packed.

    I was diagnosed in April, but I have had symptoms for 3 years.

    My fear is towards end of life, when I can no longer move on my own. I have bulbar problems already and muscle wasting. I can't walk unaided, I use a wheelchair when I go out.

    I can't bear being tucked in bed, or being confined physically. I hate being in the middle seat on aeroplanes, squashed in behind a table, where I can't easily get out, etc, the panic starts to rise.

    So you can probably imagine that the thought of being locked in my body as end of life draws near, is causing me a lot of worry.

    I am not scared of dying, I am hoping that the immobility comes over me slowly, so I have time to get used to it.

    Just stating this, so it's out in the open and hopefully I can learn to deal with the fear.

    Love, kindness and light to you all.

    ​​​​​​​Gwynie x
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