Disabled people
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Community updates


• Read over some of our recent discussions and have your say!

• Upload a new profile picture and give your profile a personal touch.

• Get the latest information on issues relating to coronavirus.

Refusing care

Rifi7Rifi7 Member Posts: 185 Pioneering
edited November 2019 in Disabled people
I am losing my mobility and suffer from chronic back pain. In April social services came to visit and offered  me a carer to come every day and help me with my personal care. I do not need them nor do I want them in my home and any scrap of indecency they are stripping from me. It’s making feel very suicidal and ill. Can I refuse this care?

Replies

  • Rifi7Rifi7 Member Posts: 185 Pioneering
    I’m disabled and recently have had full time carers coming to my home. This was arranged through social services and i don’t need them. This is causing me huge anxiety and stripping any indecency I had, away. Can I refuse for these carers to come in my home?
  • poppy123456poppy123456 Community champion Posts: 19,366 Disability Gamechanger
    HI and welcome,

    I'm a community champion here on scope and i'm here to advise others.

    I'm sorry you're feeling this way. Do you mean you don't want them rather than don't need them? Sometimes when we first have care, it can feel very uncomfortable because it feels like they are invading our space.

    When i had a carer quite a few years ago, i was very young at the time and i really hated it. I hated having someone help me into the bath and to wash my hair. I felt degraded and humiliated but as the weeks wore on i got used to this person.

    Maybe you should wait a few weeks to see how you feel and then decided whether you want them to continue. You don't have to do anything you don't want to do but they are there to help you. Would you be able to manage alone, if you didn't have that help?
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    edited November 2019
    Hello @Rifi7 Pleased to meet you.

    Thank you for sharing and joining.

    Sorry to hear this, I know it can be difficult.  Anxiety and lot of worry. How will you cope I know but I do think if it is helping you.

    I am one of the team of community champions on the forum, we help, advise support members.

    Please can I just suggest as my friend @poppy123456 has advised.

    Please can I add one other poignant point .

    If you do say no a lot to help and support as I did many times.  Ended up losing out on a lot that can help me.

    Independence is a wonderful thing and I do think you will get respect and lots of confidence form your team, self esteem is some thing we all have.

    I do say yes all  the time because you never know where it is going to be useful I coping with any issues you may have.

    You mentioned anxiety if your having problems with that consider any additional support for that does help.

    I use mental health charities used this one last time.

    https://www.richmondfellowship.org.uk.

    In my own personal circumstances wished I had said yes more often.

    I am a old fashioned, proud gentleman with mental health and disability.

    Live alone, struggle most days but find this is helping me. this forum and website. I also have no mental health support now.

    Admire and have compassion, empathy and sensitivity to those struggling , coping with disabilities that need some one to be helping.

    Understand every time think good there getting some help. No one wishes to be ending up isolated and lonely with out any support.

    Many of our members do.

    As a Christian get emotive have care, concern for our members those who are in this situation.  Do what I can offer my time and give much love, respect and support.

    Give them links to associations, societies and information.

    Please consider what you wish for just a thought.  In my life lost out on so much in the past now consider everything.

    Please if I can help be supportive please get in touch.

    Please take care.


    @thespiceman



    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • pollyanna1052pollyanna1052 Member Posts: 1,998 Disability Gamechanger
    Hi I also have care for all my personal needs, like toileting, showering, dressing, putting to bed.
    I would not be able to do any of these things without help.

    Are you able to manage your care by yourself?

    Wasn't this discussed when you had the care assessment?

    Are the carers rough with you? Are you unhappy with how they help you?

    Yes, it does take some getting used to, but what else can you do?


  • Rifi7Rifi7 Member Posts: 185 Pioneering
    At present I manage my own personal care, showering and dressing. The only thing I struggle with putting on my shoes but can put on myself. No the carers are not rough. One of the carers I’ve had for twelve years and she has been like a friend so I have never seen her as a carer. The problem is that she will be on holiday and the council are sending an agency to cover her. 
    I think I’m in a bit of limbo. I’ve live on my own and I worry so much something will happen to me and it obvious makes sense having these carers coming in but all I want is my family. I don’t want these strangers coming to me. I’m struggling to adapt mentally to live alone and disabled. 


  • crackercracker Member Posts: 324 Pioneering
    I have carers 4 hours a day. Without them I could not do my shopping or get to the doctor. I also need help with lifting anything. Without them I would be completely isolated.

    I have a hard time accepting help, people coming into my home to do things I always did myself.

    I still do not want to have to have this help, but I could live independently without it.

    Give it a month and get someone to talk about it with.

    My question to myself is...could I live alone and take care of my needs? I could not..

    I'm am learning to be grateful for the help.

    I know-how hard it is to have carers. But actually, they will help you to be less dependent.
    Take care and just see how you feel over time.

  • crackercracker Member Posts: 324 Pioneering
    Remember that you are in control of what your carers. You must let them know what you need and you limitations on personal care.

    You can refuse care, certainly.

    Why did they offer care when you do not need it?

    Carers are there to make your life better, not worse. It sounds as if you are not ready to accept them

    You might try making a Pros and Cons list.

    I also think your carers would understand if you told them how you feel.
  • pollyanna1052pollyanna1052 Member Posts: 1,998 Disability Gamechanger
    I`m about to change my carers. One is leaving and I have decided get an agency to replace her. Past experiences of a care agency are not good. The carers were never a problem..it was the management.

    But I am willing to give it another go and hope it works out.

    Rifl.....you can refuse care, but say you wont manage. Then you have to change your thinking and see this as a help not a hindrance.

    It is what it is.
  • Rifi7Rifi7 Member Posts: 185 Pioneering
    Hi pollyanna,

    I have had a lot going on when I joined the site. I was lost and I was confused.

    Firstly I was told in February that I was going to eventually lose sensation in my leg and be fully wheelchair bound. After my consultant had diagnosed me, then I got visits from social services, occupational therapist and the wheelchair people.

    Then I was told my carer who I had for 12 years would be on the payroll and that kind of messed things up with us as she had started to change and abuse her position. I also had to adapt to a new care agency coming at the weekend. 

    Then my twin brother got diagnosed with cancer in May and died in July. Burying my twin brother was the worst thing that could have ever happened to me.

    At the time of coming on this forum I didn’t want to adapt to another carer as I didn’t want to except that I needed help. It all seemed overwhelming and I was confused, so yes I didn’t know what I needed. I have another carer now who visits at the weekend and she’s very nice, but still I don’t like the fact I need someone. I am trying to adapt but it’s hard.
  • pollyanna1052pollyanna1052 Member Posts: 1,998 Disability Gamechanger
    Hi rifi, yes there has been a lot going on for you to cope with.

    Me too, last year was really hard.

    But I`ve come through to the new year...still here to tell the tale!

    I can only imagine how horrendous it was for you to lose your twin.....so sad for you.

    I have been a full time wheelchair user for many years and yeh, that is a daunting thing to accept too. But the alternative for me was daily falls, utter exhaustion and not seeing the outside world...so it is a benefit.

    I am getting used to my new carers.....3 lovely ladies....all different personalities, but all so kind and caring.

    Social Services were being awkward, but it`s sorted now.

    We keep bouncing back somehow, don`t we?

    Keep on trucking yeh? xxxx


  • Rifi7Rifi7 Member Posts: 185 Pioneering
    Yes I know I have to have a different mindset and I will get there. I have a good support network around me and I have learnt now not to keep my feelings in and share them with my friends and family instead of pushing people away.  I’m a working progress!
  • Rifi7Rifi7 Member Posts: 185 Pioneering
    I’m glad you sorted out your carers. I now have a new carer who is great. I have had her for a about month and she works on the days my other is off. I thought I would never like have another new carer but I now realise I was making a big fuss over nothing.
Sign in or join us to comment.