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Managing carer's responsibilities with PMR

Posted , 13 users are following.

christine_fay
christine_fay

Just in case there are others who are in a similar situation, I wonder if anyone has ever found help or even sympathy for the terrible dilema of having a condition that others do not recognise, have no understanding of

and little sympathy for?

Apart from Doctors, unless other people know about PMR and its limitations we are very much alone.

I have the awful responsibility of caring for my husband who has had Primary Progressive Multiple Sclerosis for ten years now. He gets worse every week and now has meltdowns at every opportunity. I only have to speak about needing something or asking him not to do something because he is no longer capable and breaks so many things, a full anger fit and shouting meltdown will occur. It is really upsetting I am feeling absolutely drained and despondant. I work from home mostly so I can care for him but he makes this very difficult. Without the work I could not pay the rent or bills even though we have a small subsidy....Sorry to moan and be miserable but there is no one else who seems to care or understand....even my own children have no idea how awful this situation is.I have recently been put in touch with a 'buddie' group who will find him a friend which may give me an afternoon a month of relief... however even that would be marvelous!.

 

5 likes, 57 replies

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  • vanessa66630
    vanessa66630 christine_fay

    Posted

    which part of the country do you live, you need a friend for support who understands you, if you live near me would be happy to.
  • EileenH
    EileenH christine_fay

    Posted

    Whatever you might have to apologise for Christine it is not for having a "moan" or "being miserable". There is no way I can understand fully what you go through - but I can imagine pretty well and it must be hell. 

    Have CarersUK anything to offer in the way of support? They claim they do. Or is it like all the rest - of little real foundation? It sounds as if you are getting close to the point where you will be no longer able to cope - and if you become any worse with your own illness that will be sooner rather than later. 

    Have you faced up your children with the situation? He is their father (I assume). I know my children would have an idea as they are both healthcare professionals - but maybe yours need to be invited round and be shown what it is like. And don't ever try to gloss over what you face when telling others - it's maybe time for you to have a full meltdown to someone too.

    I can only offer virtual hugs and an ear, I'm sorry it is so little.

  • muirkelsi
    muirkelsi christine_fay

    Posted

    I am so sorry to hear that you are in this predicament. I also have PMR and agree that as it is not very well known. I have told my friends, but as it is not visible, it  is ignored. Sometimes my arms are very sore and feel unable to drive.

    My husband and daughter ask how I feel, but that is it, although my husband does help sometimes in the house with MY housework.

    Thinking of you,

     

    • constance.de
      constance.de muirkelsi

      Posted

      Have you read The Spoons Theory by Christine Miseriando?  It helps people to understand Lupus (another auto-immune illness, like PMR).  You can download it as a PDF and perhaps print it out for your family and friends.

      I'm trying this method and it helps me to put things into perspective.  It has also helped me to slow down and take far more rests.  When I have used 5 'spoons' I take a break.  Before it was - I'll just finish this and then I'll just do that.  It never works with PMR -  you over do things and then BANG.  Perhaps you can encourage your family to read the article.  Good luck!

  • linda17563
    linda17563 christine_fay

    Posted

    Hello,  Without being rude, and asking your age, would Ageuk be of help to you, and what about the MS charity itslf, they are worth a try just for some relief!  Your doctor needs to know about you and your husbands needs, badger them, or you will be more ill yourself..... and then they will have to do something....Your own children would know how awful your situation is, if they had a day of looking after your husband while you have a break.......Good Luck,
    • christine_fay
      christine_fay linda17563

      Posted

      I am 72 years old. I do more than most people half my age and am determined that this illness will not finish me off.....My doctor is rubbish... he admits he knows nothing about PPMS and my husband has to pay for visits to a specialist twice a year... there are no NHS specialists near here. Badgering the doctors only brings threats from them.... and mean treatment like making me wait weeks for prescriptions and ages for appointments. I have had to use catheters for the last ten years and they even delay the signing of prescriptions for those. You cant rock the boat around here!

      My husband wont stay anywhere without me so asking the children is very difficult...even if they agreed he wouldn't.

       

  • mary68968
    mary68968 christine_fay

    Posted

    I think the caregiver needs to be taken care of as well.  I have been under more stress than usual recently & seem to be having more health issues because of it.  I will throw out a few thoughts that might be helpful.  There are sometimes local groups for caregivers.  Have you talked to your husband's doctor?  Maybe his meds can be changed.  I have had a few friends with MS & it is very difficult for the person & the family. Also  maybe call MS groups & see if they have any suggestions.

    I hope you will be able to get more help soon.

    • EileenH
      EileenH mary68968

      Posted

      I suspect Christine's husband's doctor is the same incompetent GP she has to deal with. I wouldn't give him houseroom but she has no choice.

       

    • mary68968
      mary68968 EileenH

      Posted

      I realize some of them just hate to be bothered with those pesky patients.  It makes all the problems so much worse with no support or help from a physician.  Overwhelming.
    • EileenH
      EileenH mary68968

      Posted

      Well I suppose I and all the others who used to joke there was only one thing wrong in the NHS (the patients, it ran fine without them) were ahead of our time...
    • constance.de
      constance.de mary68968

      Posted

      What does this symbol mean?  I am useless at using symbols when texting.
    • EileenH
      EileenH mary68968

      Posted

      :-)  smile

      :-( frown, sad

      ;-) wink

      They will work anywhere.

      And as Mary says - click on the smile box at the top right of the box and choose your emoticon

    • constance.de
      constance.de EileenH

      Posted

      Wow!  I can't stand smilies (they used to pop up all over the place) but they're much better, surely, than a couple of dots and a dash, etc.

      Now I know I'm getting old!

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