Parents and carers
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I'm a carer for my husband

IsiIsi Member Posts: 1 Listener
edited March 2019 in Parents and carers
I'm a carer for my husband 52 who has life limiting dysautonomia. His particular diagnosis is rare and I've yet to be in contact with anyone in the UK caring for his condition - orthostatic hypotension, gastric and bladder problems, very low immunity, mood swings ( he can be particularly agressive and blunt verbally ) and communication issues ( unless his blood pressure is higher than usual he doesn't process fully written or verbal communications...can't talk to him when lying or sitting down !) . Life is very challenging and lonely after 27 years of an active life with vibrant banter and with the financial burden now transferred to me and 2 teens starting uni ( one with Asperger's) it would be lovely to be part of a community who really understand what we are going through . Thanks .

Replies

  • UnunpentiumUnunpentium Member Posts: 10 Listener
    Hello Isi! Welcome to Scope.

    We have a carers forum on here that might be somewhere you can talk to like minded people. In particular this topic might be of interest https://community.scope.org.uk/discussion/35980/road-to-resilience-how-to-avoid-feeling-overwhelmed#latest

    Sarah
    Sarah - Online Community Volunteer
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger

    Hello @Isi Pleased to meet you welcome.

    Thank you for joining and sharing.

    Sorry to hear what you are going through. How can we as a community be supportive. Ready to listen.

    We are friendly, care and share.

    I am one of the team of community champions who guide, advise and help new members who join.

    Please ask if we can help with anything. Some one will know. From our community or a member of our team.

    Please take care.

    @thespiceman

    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,945 Scope community team
    Hi @Isi, welcome to our community and thank you for your honesty. It sounds like you're having to face a significant adjustment. If we can do anything to support you, or you have any specific questions, don't hesitate to ask. In the meantime, please get involved in the discussions across our community — we're a friendly bunch!

    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
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