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Thread: Respite

  1. #1
    Forum Member Peckham Boy's Avatar
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    Respite

    Can anyone tell me if my partner can force me to go into respite?
    I have 2 carer's call in to me 4 times daily
    I don't want to go into respite so can I refuse?

  2. #2
    Forum Member Terry's Avatar
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    Hi PB and welcome to the forum;

    You can't be forced but if they feel that strongly about it they might just leave you.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
    Forum Member Ellie's Avatar
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    Hi Peckham,

    I am sorry you find yourself in this situation.

    Unless she/he has Power of Attorney over you and your medical decisions, you should not be forced into respite if your current care arrangements are sufficient.

    If you rely on your partner to provide care when carers are not there, there may be a medical need for her/him to get a break - of course it's better if this is done by consensus.

    Not knowing the circumstances, but other factors to consider are: if you refuse to go where will that leave the relationship? Who is organising the respite or is your partner paying privately? Is house jointly owned/rented? If you went, will your care arrangements resume as is?

    Best wishes,

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #4
    Forum Member Peckham Boy's Avatar
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    Hi Ellie
    Thanks for your reply

    No she doesn't have LPA and we live in a council home .
    yes she does provide minimum care ie giving me a drink or something to eat but everything else is done by my carers .

    The respite would have to be provided by the nhs I assume

    I would hope that the care provider will continue if I did go
    No there is no medical needs for either of us for the need for respite

    plus we have 3 children under the age of 11

    regards
    PB

  5. #5
    Forum Member Ellie's Avatar
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    Then it's your choice PB but, forgive me for being so blunt, can you handle the consequences of saying No? Respite can work for both parties but nobody should be forced into respite against their wishes.

    Either way, you're in a difficult and precarious position, I don't envy you...

    Have you a good MND or Community Nurse who can guide you? Or is your partner working with them on your respite?

    I hope you both find a solution.

    Love Ellie.


    (The irony is that so many hospices have stopped offering respite, it's as rare as hen's teeth in parts of England.)
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  6. #6
    Forum Member Lynne K's Avatar
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    Why does your wife want you to go into respite and for how long did she suggest? These things obviously effect the decision whether or not to go for respite. If my husband ever gets to the stage of wanting a break from caring for me, then I would agree to go for a week or two respite so that he can have a rest, both physically and mentally and in doing so recharge his batteries. I'd make that decision out of love. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  7. #7
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    Hi
    Have you heard of the Carers Trust For All? This is an organisation which will organise emergency care if a partner or carer can’t. Your partner might be prepared to leave you knowing that this could be called on if necessary. www.carerstrust4all.org.uk

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