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New to Paralysis. Need help and info please

SteveBSteveB Member Posts: 3 Listener

My wife is currently in hospital and while there has become paralysed from the chest down. Need all the help and info to help me to look after her at home or in special housing, just dont know whats out there

Replies

  • feirfeir Member Posts: 396 Pioneering
    Maybe i shouldn't be but i am surprised the hospital has not offered you any information.

    All i know of is occupational therapy can assess you for home help and adaptations, i'm still waiting to see them myself but am not paralysed, no idea how long waiting lists are. I've seen people being assessed by them at their pre-ops also so know the hospital have them come there.
  • clarabelleclarabelle Member Posts: 71 Courageous
    The hospital should have a discharge coordinator who can liase with adult social care to organise a care assessment - you should also be offered a carers assessment.  There should be a disability advice organization in your area as well as an advice service. I'd advise you get in touch with them with them asap. 
  • Weebles1703Weebles1703 Member Posts: 13 Courageous
    I recommend the Spinal Injuries Association. They offer so much advice, information and phone support. Even if your wife's paralysis wasn't caused by an injury, lots of the info will still be relevant https://www.spinal.co.uk/
  • SteveBSteveB Member Posts: 3 Listener
    Problem is that we are a long way from her coming home and it's a early for them to advise. I think I just need to know there is a life after this.
  • Weebles1703Weebles1703 Member Posts: 13 Courageous
    There is life afterwards, it'll just be a bit different. The one bit of advice I'd add it to say yes to all support offered - it's easier to drop it if you find you don't need it, than to try and get help later. If they offer a good care package, grab it with both hands. I'm sure someone at the hospital can give you a rough outline of what will happen when your wife is discharged, just to put your mind at rest. 
  • janethaguejanethague Member Posts: 7 Listener
    Cant beleive that the OT and phisio as not had a word with you you can arrange an appointment with them also doctors so good look with if all 
  • jacqui838jacqui838 Member Posts: 4 Listener
    Hi. My mum.was the same. But with her it was cancer. I know from experience adult social services are good. And they should help with all of that . Also maybe they will fast track seeing occupational therapists to get adjustments in the home and the right bed for her. It's all very daunting at first. And make a claim for pip if your wife isn't on it yet. Hope this helps 
  • Jean_OTJean_OT Member Posts: 528 Pioneering
    Hi @SteveB

    It is totally understandable that you are seeking as much information as possible about what may potentially be happening when your wife is discharged.

    Unfortunately you are dealing with a system that tends to provide answers to such questions according to it's own timescales, rather than when the patient's loved ones might feel that they need the information. Sometimes it isn't possible to know what will be needed until the person in hospital  has come to the end of their medical treatment and been assessed.

    From what you say it sounds as if it will be a while yet before the discharge planning team become involved. How her care will be provided will hinge on her care needs assessment and the community based Occupational Therapist (OT) will assess for home adaptations. 

    However, do talk to the hospital based social worker and OT and let them know that having more information about the processes and timescales would be helpful for you now.

    I don't know the circumstances that have lead to your wife's current condition but if there are relevant condition specific charities it would be advisable to seek support from them. The Scope Helpline [email protected] 08088003333 may be able to signpost you and advise further.

    There is also information on the Scope website that may be relevant: https://www.scope.org.uk/support/disabled-people/becoming-disabled/overview

    Best Wishes
    Jean

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • MaddieKnowsMaddieKnows Member Posts: 1 Listener
    Hey, I'm very sorry to hear of your situation.

    I'm much more inclined towards practical information in a situation, and this blog I found about the cost of setting up the home for paralysis helped me and a friend see things out before us: https://www.fuseassurance.com/preparing-home-paralysis/.

    I hope this helps :)
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