Coo blimey

Do you ever get the feeling that you can't do right what ever you do. I made the decision (for safety reasons) that Brian should be hoisted at the moment because he is unable to stand for very long (even using rotunda) legs seem to be week and it's not good practice to have people physically hold him up when his legs are buckling under him.

So i suggested that they do the bottom half on the bed or when he is in the air in the bedroom over the camode all but one is ok with it and she thinks he should be done in the bathroom as per usual thats ok but the floor space is so limited that you would have to stand on the hoist legs to be in the bathroom at the same time. My god they complain about the lack of room in there as it is.

i am hoping that it is just a temporary thing and once the medication (baclofen) is out of his system he will be back to how he was. I dont think they realise that i don't want him to hoisted all the time because that means he has had a deterioration in his psp. I want him back useing the rotunda asap.

i really don't want to fall out with people but surely they can see what is the best thing for everyone involved. If i had allowed them to carry on as they was and someone got hurt because they ignored the equipment that is here who would get the blame?

Sorry to babble on but I'm not sure what to do any more it seems the more i try to do the correct thing the more I'm made to feel in the wrong. Janexx

12 Replies

  • Hi Jane you know best, just tell them what you want them to do, whether they like it our not, it is your decision, and stick to your guns don't let them make you feel bad, you are doing a wonderful job, as we all are, and we know what is best for our partners. Yvonne xxx.

  • I'm with Yvonne you are doing the best....Is it what you want? wouldn't we all want out mates to walk on their own....however we must remedy in whatever way we can. I don't know but I do not think it would be your fault if they made a decision that led to their injury....even if you suggested it.

    No guilt No worries....keep on keeping on :)


  • this is why I try to keep doing for John myself , I do know him better than anyone and have been supporting him with this abominable illness for 10 years .

    I do have cares night morning and again after lunch . john washed bottom half in and finished off after finishing on the commode , The carers raise hi to do it but I use a low stool and do it sitting down , Nit so good for me but not held up in sling for as long . .

    I have started to step back a little , it has taken me some time to accept that it is better for me and they are kind to John . I have been getting two more regular carers which has made such a big difference to ME .

    I agree Do exercise as long as you can comfortably do it , it does give a feel good factor but as for delaying it , NO WAY . what will be will be and the meds have only caused John more problems than he had before ,

  • Hi Jane. I agree with the two replies. Don't let them take over, you know best.

    Take care maddy

  • Hi Jane I agree with all the comments you know best but do not hurt yourself, if his legs are weakening it might be that a stage is approaching where wheel about comode is only answer. Try to keep him mobile but not at your expense. Margaret lost ability to stand and balance over a year ago, carers and Marie Curie all have done their assessments which mean wheelchair, wheel commodes and hoists, for them. But I can still hold her upright and walk her short distances, they all do not like it worried about my back, but I think exercise helps her so I walk her around the house, to from loo and to and from car, but getting more difficult as she tries to step off on same foot upsetting balance and straining myself to keep us both upright. So I may have to accept walking will soon be over but not without a fight. Best wishes Tim

  • Sounds 100% the same as my situation with my wife (across the pond in Kentucky USA). I have her walk as much as possible, but balance continues to worsen and starting to cause my to stumble with her. I have to be alert and have nothing else in my hands when moving her.

  • Thanks we both have the same problem, I realised empty hands the hard way: car keys can cause bad cut.

    Does your wife try to walk with a sailors gait stiff legged side to side motion? Margaret does which is great for walking straight line with me in usual position behind her, but causes issues turning corners as she loses the rhythm and gets off balance. I now change my grip before corners to underarm rather than shoulder grip. Seems to give her confidence and means I have more control of the roll and turn.

    Do you find that your wife does not like to bend preferring to transfer to wheelchair, toilet, bed, car as a tree straight back, tried using one arm to ease the backward motion while using other hand to push her tummy to induce a bend but finding getting quite strenuous as she now resists and if safe I have to let her fall backwards onto chair etc while protecting her head. Other than weightlifting to strengthen my arms have you come across any other techniques to ease the transfer?

    Best wishes Tim

  • Hi Tim, only know about walking so far, not got to the transfer from wheel chair yet! But when walking, I keep one arm around S's lower back, the other hand on the front of his arm. This way, I can keep him from falling both ways. Also, if he does go and I can't stop him, I am out of the way, so shouldn't take the full force of his fall and may even be able to soften the fall. That's the theory anyway, thankfully, I haven't been fully tested, but I do keep him upright!!!

    Lots of love


  • WE HAVEA GOOD WAY OF WAlking fred stands infront of me facing the way we want to go,, with me holding his shoulders--- and he walks forwards with me trundleing along behind him

  • Oh Jane, it never ends does it?!!!! The constant fight to get things done properly. You could try having a quiet word with the awkward carer, make a thing about it, take her into another room and explain, very quietly what you to want to happen. Express your concerns about Brian's welfare, her safety, lack of room etc etc etc. If you want to go completely over the top, get her to sign a letter that you have prepared, stating the above. Don't forget to put a heading "Safe Guarding Brian and Carers". If that doesn't do the trick, don't think anything will!!!! Then you will have to get the boss in and get a new carer, but at least, you will have the proof that you tried!!

    Dust off those boxing gloves girl, you can do it!!!!

    Lots of love


  • Oh heady how comes i can put both feet in it without even trying. The carer that had a problem with hoisting Brian was upset because when she worked on friday he was standing with some difficulty and when she returned on monday he was being hoisted because he was unable to stand long enough to have his bottom half washed etc. She admitted to me that she was upset thinking Brian had deteriorated so much in a couple of days. I explained to her that it was only a temporary measure because i was still standing him to transfer during the day and once he is more àble to stand for longer we will return to being done in the usual way ie useing the rotunda in the bathroom. The relief on her face made my eyes water.

    She did apologise for having a face like a slapped backside and we are all ok again. I am convinced that the reason he was unable to stand for any length of time was the tablets we tried for the stiffness (baclofen) because since we have cut down then stopped them he is getting back to old self. Janexx

  • Hi Jane, glad you got that sorted out. We forget these Carers, can and do, actually get attached to our loved ones. After all, they have to, they perform so many intimate tasks for their clients, it would be difficult not too!

    I haven't had that problem yet, S does not need Carers coming in yet, but when we left South Africa in April, his Physiotherapist, was in tears, saying good bye to him. He had been her patient for about 7/8 years.

    We all worry at times, that all others see, is an empty shell, not the person that we remember. But in actual fact they see the real person, not who they use to be, maybe, but still a person with personality, feelings, sense of humour, that needs their care.

    Lots of love


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