Parents, carers and disabled parents
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24-hour carer for my husband

lesleyoakleylesleyoakley Member Posts: 6 Listener
Hi I'm a 24 hour carer for my husband  he is paralysed down one side, has dysphasia, cognitive and lots of other problems, but in general he is in good health. Its extremely hard work and there is (no me time ) so to speak other than when we get a regular carer for one hour, I'm nearly always stressed, not had a holiday for over 14 yes and missing out on a life, feeling sorry for myself sometimes and then remember just how must my husband feel, but because of his dysphasia he is not able to say, we feel like a number in a system, and not a very nice one, always having to verbally fight my husbands corner, then feeling frightened in case  something happens, one company we had theft and abuse , another company couldn't maintain the care package because of staff leaving another company had to wear shoes and no shoe covers even when they showed my husband there be mud everywhere and dirt ( that felt like no respect for us or our home) now this company  so far can't seam to get a regular team together ( within just over 3 months there has been 35 carers and sometimes 2 hrs late ? Its like nobody really cares and as we are not wealthy we rely on direct payments . Anyway I'm already moaning sorry just wish I had funds to set something more careing up plus a small holiday place that caters properly without the so expensive charges 
Well everyone thank you for letting me have a moan 
Take care 

Replies

  • MrsLogicMrsLogic Member Posts: 42 Connected
    Hey @lesleyoakley

    Thank you for taking the time to write.  Until 2015, my husband had to co-ordinate the care for his mother, who had vascular dementia and his brother, who has both mental and physical disabilities.  It was a complete nightmare -there were different care teams carrying out the various roles, plus my MIL didn't like my BIL being cared for by anyone else but her!  Oh my Lord!

    We're always here for you :)
    Jo, aka 'Mrs Logic'
    <a rel="nofollow" target="_blank" href="http://faspie.blogspot.co.uk/">http://faspie.blogspot.co.uk/</a>

  • JayPeeJayPee Member Posts: 13 Listener
    You have a lot on your plate. There is no magic answer but If you can't get out what about getting people in to ring the changes give to a bit of a social life. Do you have an interest? Craft/ cards/ knit and natter / organising? Consider whether you could run something from your home to bring folks in if you can't get out. A couple of hours per week may help. It wont be the whole answer but may open up a new world- perhaps with new people to support you.
  • lesleyoakleylesleyoakley Member Posts: 6 Listener
    Thank you for the responce nice to have someone who reads the messages I guess I just sometimes real like a moan, 
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Hi @lesleyoakley how are you getting on? Have you been in touch with Carer UK? They might be of help to you?
    Scope
    Senior online community officer
  • lesleyoakleylesleyoakley Member Posts: 6 Listener
    Im registered with the carers association but to be honest itS very difficult, as a good a job as everyone does its very obvious there just isn't anything that anyone can offer me, that suits my husband won't have anyone else stay whilst I go out and, yet on a good note he will now stay on his own for a couple hours whilst I go out and the carers come in for one hour so that's a bonus and even though it may not be every week I suppose I got to be grateful, but my selfish side sometimes wants more. Limke I want to do something without having interruptions, that never ever happens I can't even sit down to read a  book and if I'm on the phone he shouts me, so very demanding. Well that's another moan. Aarrgg 
    Is there anyone else out there who has this that needs to chat ?  Guess having a chat is a good start, we have no friends they all left us when this happened to my husband so there is no one to invite in for a coffee and guess what my husband would be shouting and going mad no doubt he won't get out of his bed and won't meet people easily, as he can't say exactly how things are with him due to his dysphasia it makes things even more difficult, and the cognitive problems its all rather not good    for anyone who reads   take care 
  • JayPeeJayPee Member Posts: 13 Listener
    I know there is a postcode lottery for help. I don't want to offend you but lets assume you are somewhat more than 25 ( ha ha) How about a support group for you? Playgroups were never for the children but for the parents to meet others. Social services, google, citizens advice can all give local information. Perhaps something that helps you look out rather than focus on what must be a real challenge for you. What about https://www.thesilverline.org.uk/ ? I was the parent of a challenging child and its easy to withdrawn because you think no one wants you visiting. You are at the other end of the spectrum now. Invite your friend to come and visit again. Ignore or include your hubbie and get your friends to help you. 
  • lesleyoakleylesleyoakley Member Posts: 6 Listener
    Thank you I will look at this. 
    Take care 
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    You are entitled to moan! We all need to release and it does help to talk to other people in a similar situation.  This community has lots of brilliant members, so do keep chatting  :)
    Scope
    Senior online community officer
  • sudilansudilan Member Posts: 4 Listener
    Have you had a carers assessment for your needs? This may help you get additional support.
  • lesleyoakleylesleyoakley Member Posts: 6 Listener
    Hi  Sudilan yes I've had an assessment someone came to the house last year, they gave me a little bit of money so I could get a bit of the garden done that was lovely, it made me cheat up somewhat.  
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