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Desperate feeling as a carer..

pinemartine Community member Posts: 57 Courageous
edited September 2019 in Children, parents, and families
Hi, everyone.
I care my disabled husband full time.
I was recently diagnosed severe anemia. I had to have blood transfusion at A&E.
Any physical work makes me out of breath and I am  feeling exhausted all day.
But I still have to do all the house work and carding my husband. 
My husband has health problems but he can do little things like taking frozen meat out from the fridge to defrost, putting his clothes to laundry basket etc. 
But he doesn’t do any of these even he can see me feeling unwell and when I ask his help, he says he is tired too.
I have given up my job, I moved in to his house to look after him away from my family and friends and this is what I get.
I am everything for him; his nurse, his cook, his cleaner, his wife but I feel I am nobody. I am losing myself.
I don’t think I will get any help  from him when I get older or get more serious illness.
I even start thinking to leave everything behind and start my own life alone.
Is there anyone feel the same or had similar experiences? How do you cope with it?
I am sorry if I am posting in a wrong category...


  • Adrian_Scope
    Adrian_Scope Posts: 11,393 Scope online community team
    edited August 2019
    Hi @pinemartine.
    A lot of carers come onto the community and mention how much they're struggling, so you're not alone and this certainly isn't the wrong category.

    As a carer, it can be very easy to forget that you are ultimately just as important as the person you're caring for. Have you tried speaking to your husband? Honesty is often the best policy when it comes to resolving issues with your carer, or the person you're caring for. If something in the relationship isn't working, it needs to be addressed and it does sound like you need to be getting more support for yourself. It's important to remember that relationships are two-way and you should be getting support as well.

    Are you able to take any time for yourself at all?
    Community Manager
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,665 Disability Gamechanger
    Hi @pinemartine
    It sounds very overwhelming at the moment for you, as Adrian says you aren't alone and lots of members have talked about how tough it can be.
    Have you had a look at the Carers UK website? There is lots of information about being a carer and routes of support.
    They have a video about taking breaks as a carer.
    They say:

    Introducing breaks

    Breaks can take many different forms. It could be a matter of dipping out of your daily routine for half an hour with your favourite novel or your idea of a proper break may involve basking in the sunshine of the tropics (well most of us can dream!).

    Whatever type of break would be most practical for you, we hope to shed some light on the ways you can make it possible, however difficult that may seem when all your free minutes seem to be taken up by your caring role or other commitments.

    Why is it so important?

    The host of benefits that taking a break can bring are well documented. Not only is it imperative for your own health but also, as those featured in the video testify, it can be good for everyone to have a change, including the person you care for. 

    As our carers in the video demonstrate, taking a break is about giving yourself a break from the responsibilities of the job at hand rather than taking a break from the person you care for. If you're struggling to justify taking the time out, see our next film: Dealing with feelings of guilt and anxiety.

    Senior online community officer
  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
    edited August 2019
    Hello @pinemartine

    Welcome aboard. How much time do you get to yourself? Have you contacted your local council or not? The benefits of taking a proper break are well documented. My partner has stepped in when I was showering, on the phone, napping or reading alone in bed. Do you work? 
    I get respite when I am at work. It helps me remember I am capable and need a break for a few hours each day too. Another tip is to keep a diary. It helps as well. Breaks help me stay sane. I use them to recharge my batteries. You cannot carry on like this. Read this info sheet on the importance of breaks. https://www.carersuk.org/images/Factsheets/Taking_a_break_April_2019.pdf

    And for additional information, please see this link. It has good information for you. https://www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/carer-breaks-and-respite-care/
    You need to take care of yourself too. Even if it’s only a hour that still counts as well. Seriously. I attended a wellness event today that was aimed at carers and their families. I was able to get a quick neck massage while someone else watched my daughter and son nearby. When I went to get food, a friend kept watching them for me. 
    Do you live near family? Can you ask friends to help? Respite care is essential. There are plenty of care companies all around the country. Find out more on their website or call/email them to ask for a assessment. Do not beat yourself up. You are not weak.
    Ask your husband to help you with things he can do safely. If he refuses, say you are considering putting him in a care home funded by the government instead. Is he willing to pay for a cleaner? Can he cook? What can he do independently? Make a list then laminate it. Keep it on a wall where he can see it. Praise him for tasks that he does properly. 
    Call your local employment services team. Perhaps he needs a job too? Figure out what he can do for a living and then take it from there. Draw up a list of skills and qualities that would be useful at work and go from there. Call companies to find out if there are any vacancies or ask around. What are his hobbies? 
  • Silver925
    Silver925 Community member Posts: 106 Courageous
    I can understand how you feel. My sister is a full time carer for her husband who has many complex problems. She has done this for over twenty years with hardly any help. I see her crying and in dispair many times she only ever talks to me and her GP. I hope you can get help. She gets paranoid about people coughing and sneezing in fear she will take germs home with her.bIts awful.Good Luck hope you can get some support. Take Care.
  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
    Are you seeing a therapist or counseller? Hopefully you can find help for you both. 
  • Chloe_Scope
    Chloe_Scope Posts: 10,581 Disability Gamechanger
    Hi @pinemartine, how are you doing today?

  • pinemartine
    pinemartine Community member Posts: 57 Courageous
    Sorry, I didn’t post anything. 
    I tried to talk to my husband yesterday. He told me there is nothing I should do. He thinks I do all the housework because I want to do. It’s not true. There is no one else to do so I have to do...
    I feel so sad it seems there is he has no appreciation for what I do.
    He has PIP home visit F2F tomorrow and I’ve been trying to put my self together and prepare for it.
    Thank you for your warm words. I will be ok.
  • Chloe_Scope
    Chloe_Scope Posts: 10,581 Disability Gamechanger
    Hi @pinemartine, that is not a problem! I'm sorry you don't feel appreciated, this cannot be easy. You are very valued here on the community and I hope you can use this space to share your worries and concerns. 

    I really hope the f2f goes okay and we are always around if you need support or advice.

  • kamila199
    kamila199 Community member Posts: 2 Listener
    hi @pinemartine i'm so sorry you are struggling and having difficulty taking care of your husband. i have also been a carer for my dad who has dementia, and eventually it became so challenging that we had to hire a private carer. honestly, this was this best decision we made! the carer is so professional and takes care of my dad so well, she does everything like bathing him, feeding him, takes him to the doctors. at first i felt a it guilty having someone else look after him, but she only comes in a few days a week, so its not all the time. If you're thinking of getting a carer i would recommend it!! 

    i spoke to a few agencies so they might be useful for you:

    hope this helps!!

  • newborn
    newborn Community member Posts: 832 Pioneering
    Have you contacted  the carers organisation?   They used to be helpful,  and just knowing  how  many  are in the same boat  can be a comfort for isolated  carers.   If you want it, readers here can send you virtual hugs and warm feelings ! 

    Other posters are right.  Maybe  tough love is what he needs .  Put your foot down  with a firm hand. If you get to breaking point, he's  in the soup.  Protect yourself for both your sakes.  
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