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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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  • pat38625
    pat38625 christine_fay

    Posted

    Hi Christine, I feel for you and am glad that you are being honest about how you're feeling.  You need support and maybe some respite.  You need to take care of you first (easier said than done) and then you can care for your husband.  You really need some type of support system put in place.  Family, social workers, anyone that can help, just for you to get a couple of hours respite.  I will say a wee prayer for you tonight and hubby of course.  Bless you.  Pat
  • angelcake61
    angelcake61 christine_fay

    Posted

    Hello Christine 

    my situation is almost mirrored to yours, but after years of trying to persuade my husband to take medication for emotional lability he has, I can see an improvement although not taken away completely his 'outbursts '

    After  a long hard battle he also gets a personal budget to employ a PA and eventually I think he will be entitled to continuing healthcare, have you looked into these possibilities?  He has a neurological support worker too, all these services do not go without their problems and trying to get some action from them is tedious, long drawn out and exhausting.  He is having a PEG fitted soon and I feel that will take quite a bit of pressure off, I cannot leave him for a moment as he will go off and do something that has a potential danger attached, even when he's with his PA I worry.

    The doctor I first saw failed to diagnose even though I'd told her I though I had PMR, I was in terrific pain, all she told me was to put my husband into care.

    we have been waiting absolutely ages to have a track hoist fitted, trying to get my husband into bed is exhausting, I don't know how the SS think we can go on given my condition too, I'm awaiting foot surgery and gallstone op.   Carers Association haven't given any practical  help, I have called them a few times when I've been in despair, I feel that by giving a small yearly grant their duty has been for filled . I went to a carers ball for the first time at Christmas, we were treated like school children, the main topic was about giving awards to the volunteers, because without the work they do 'where would we be' not one mention of the upaid  hours we put in. I just feel sad that it's one less avenue for us to go down.

    my heart goes out to you, gone are the relationships we used to have and each day it gets harder to lift your spirits, or to put on a brave face, but I do appricate all the little thing in life too. Take Care.

     

    • christine_fay
      christine_fay angelcake61

      Posted

      That is so true... people can be cruel just by thinking they are being kind. My husband was a film director years ago, flew his own plane and had a number of very posh cars. He had plenty of friends then and our house that had a swimming pool was always chock a block with uninvited guests every weekend!

      I am a chef and cook for people in their homes or on film sets... that is my respite but I have to pay someone just to 'look in' on my husband if I am away for many hours... that is worrying too because they do not always help and some he hates so wont let them in... I always come back to such a mess it's heartbreaking. Without my landlord I would have no one I could trust and I would give anything for the kids to have him for A WEEKEND ONCE IN A WHILE i COULD GET SO MUCH DONE... EVEN CRAWLING AROUND ON MY HANDS AND KNEES...

      Oops sorry fat thumbs today!

       

    • constance.de
      constance.de christine_fay

      Posted

      How very depressing!  Where are all those 'friends' now?

      No wonder your husband gets frustrated, but why do people always put on to the ones who care for them most?  Try staying in bed one day (say you can't get out of it - which many of us couldn't at the beginning of PMR).  Perhaps then he may try and help a bit more - it would give him something to do!!!

    • Mrs.Mac-Canada
      Mrs.Mac-Canada christine_fay

      Posted

      Ask the kids to have him for a weekend but work a day (because it sounds like something you enjoy)  so you can afford someone to come clean the house one day and you DO NOTHING the next day except perhaps visit with one of the PMR ladies that may live close to you.  Even 45  minutes away to the meeting Mrs. O talked about would do you the world of good. Bet you'd get lots of hugs there😊

      Kelowna is one of my favorite places in BC especially in the summer.  Have you been?  If not maybe your daughter could find you a cheap flight and you could visit. It's a long shot but ou never know.....  I could meet you on the way through👏👏

      Hugs, Diana🌸

    • christine_fay
      christine_fay Mrs.Mac-Canada

      Posted

      Do you know that this conversation thread has given me more enthusiasm for living than anything in the past two years... It's amazing how just revealing a few worries can bring out the best in others who are willing to support with kind and above all understanding words. One can become horribly hardened and cynical in dire situations and I am sure that is why my children don't involve themselves so much... I can be a wry and cantankerous old biddy when it comes to small talk and innane girly stuff. However I am always the first one who gets asked to do things... like feeding cats when they go on holiday and picking up things from cash and carry or wholesalers when I go there for work purposes. My only good thing from that is I get my granddaughter on school holidays.She helps just by being here but unfortunately... as a normal teenager, only does things when asked at least ten times. I would love to go to Kelona one day but my husband couldnt make it and I cannot find a place to have him for enough time for me to go. ....
    • constance.de
      constance.de christine_fay

      Posted

      Get them to pick things up for YOU.  Ask them to look after their father while you have a few days holiday.  It's mad that they expect you to do so much.  I think you have been trying too hard to be independent, to be a good wife, mother, etc.  This  is a time when you need to find yourself.
    • Mrs.Mac-Canada
      Mrs.Mac-Canada christine_fay

      Posted

      I'm glad you are feeling better🌺. This truly is a wonderful group of people. 

      It would be so fun to meet face to face.  Maybe I'll be able to take a trip to the UK one day and meet some of you.  If anyone is coming to Vancouver, BC please let me know and I'd be happy to meet you and show you around (slowly and gently)👏👏

      Hugs, Diana🌸

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Mrs.Mac-Canada

      Posted

      Diana

      "Even 45  minutes away to the meeting Mrs. O talked about would do you the world of good. Bet you'd get lots of hugs there"😊

      Have you been peeping, Diana!smile  We're not short on hugs at the meetings as Eileen will confirm - she visited last year!

    • EileenH
      EileenH MrsO-UK_Surrey

      Posted

      They are decidedly loving!!! Sparklin's biccies are good for those who can eat them and I hear there is the occasional gluten-free contribution. Then some of us went for lunch afterwards!

      As a one-off I was there from northern Italy, lodger was there from the NE of England, Nefret from the south coast and someone from S Wales too. Plus people who travel an hour (in good traffic conditions) every time.

      Definitely worth it - though one day MrsO will have to look for a larger room...  

    • EileenH
      EileenH christine_fay

      Posted

      " I can be a wry and cantankerous old biddy when it comes to small talk and innane girly stuff."

      You are not alone there either! I could listen to you talk about food all day though!

    • MrsO-UK_Surrey
      MrsO-UK_Surrey EileenH

      Posted

      Eileen,

      "though one day MrsO will have to look for a larger room..." 

      Have you been peeping, too?! 57 on Wednesday, the highest ever - I'm still recovering!

      I have offered them the possibility of another venue with a larger room not a million miles away, even with it's own free car park, but they all decided they were quite happy being packed in like sardines!

       

    • Mrs.Mac-Canada
      Mrs.Mac-Canada MrsO-UK_Surrey

      Posted

      My wonderful Mum always said we need 8 hugs a day and, although I don't often get 8 (unless I'm with my children and grandchildren)  I definitely get quite a few.

      I LOVE HUGS!!!

      Big hugs to everyone💕💕

    • christine_fay
      christine_fay EileenH

      Posted

      Well if you want food talk I am happy to do that... I cook for the Queen.... And Sir Mick Jagger among many other interesting people. 
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