Home sweet home

Brian came home on thursday about six in the evening and I think he spent the first 20 mins crying because he was so pleased to be home. According to the hospital he was non weight bearing and double incontinent. So the breif to the carers he was to have personal care on the bed then transferd to wheelchair useing a rota stand. The aim is to get him on the walking frame in 2-3 weeks time.

By friday mid morning he was standing using the frame so he could use the toilet. When physio came pm they got him to use the rota stand and when they asked what was happening about toileting him I said he used the zimmer to stand so hey ho they had him walking a couple of steps.

carer's this morning had a freak out because Brian was sitting on the toilet half done. (Would you leave your hubby in a wet bed and wanting to use the toilet) they kept on about they was supposed to do him on the bed. But why do they want to do it the hard way.

oh well I had to agree to have them coming in so they would let Brian home. Well he home now the carer's are visitng so now we have to agree to disagree.

Sorry to rant but am at a loss as to what to do now. Janexx

9 Replies

  • Hi Jane, as long as you are coping, you are doing great! I know it sticks in the throat, but try to get the carers to do something else, just to keep them on board! The last thing you want is for them to clear off, thinking they are not wanted. It will be impossible to get them back! Or them declaring that your husband is a vulnerable adult! (Sorry, spent too much time with social services this week!!!)

    I totally agree with you, that Brian, should be up as much as he is capable of doing. That's fantastic that he can walk a couple of steps again and able to get to the loo without having the indignity of being in a rota stand. What's wrong with carers, that they can't be flexible. I know I may sound totally stupid now, but why do they think that Brian will only need to go to the toilet when they are there and not at other times of the day.!!!

    Keep up the good work Jane, but remember to play the game when it suits you!!!

    Lots of love


  • There is no flexibility in the plan that has been put in place. No provision for him to be put on the toilet. Only two visits a day and that is personal care in/on the bed and transferd from bed to wheelchair and vice versa useing the rotastand. So for the upto six weeks that they will comeing in there is no encouragement for him to get mobile again. So it seems to me that physio will be incouraging him to be mobile but care wants him bed/chair bound. Thought they was to all supposed to work together getting Brian back on his feet again. Janexx

  • Jane I woke this morning to a wet bed having changed it at 2am when C had previously wet it. He is still wearing pads and nappies which are dry. If anyone can explain how the bed gets wet I'd love to hear from you. So my morale was somewhat low when I read about your situation. Here in south west Turkey I am currently sole carer (though hope to change that situation soon) but reading about the lunacy that is deemed 'care support' in the UK has cheered me up no end. And now the sun is up and shining which is another bonus. I don't know what you have to do to sort out your Kafkaesque situation but I shall carry on one day at a time. Good luck. Pat

  • The carers are limited to do only what they are told. Just imagine the trouble they would be in if they got him standing and he fell! They could lose their jobs, or worse. Whoever wrote the care plan thought that the safest option was for bed care. If you want it changing you need to see someone more senior than the carers. I know it must seem like a constant fight to get the best care for your husband and sorry I can't be more helpful.

  • I know what you are saying being a trained carer myself I know you have to go by the care plan but if the physio is walking him during the day why do the care company insist he his non weight bareing. There is no flexibility in the plan ie if Brian able to walk and stand please amend plan. Janexx

  • Dear Pat the wet bed dry pads could be a case of him getting percy out wetting then tucking him back. Its surprising what people do useing hidden memories also it seems part and parcel of psp that they void when asleep.

    today is the day the care service either changes the care plan or gets cancelled. I will not be bullied into having something that is not suitable. Good luck all. Janexx

  • Hi Jane,

    Good for you! Take charge, but one thing. DONT let them discharge Brian, insist that he needs help. Just they are giving him the wrong sort and it is causing more problems than its sorting! Make something up if you have to, but DONT DONT DONT let them discharge him!!!!!!!!

    Lots of love


  • Good luck, Jane - let us know how you get on.

    The care regime seems to have changed since we started a few years ago - is what you are getting what they call "First Response"?

    I agree you should be in the driving seat and you're doing a wonderful job by the sound of it.


  • Glad your Brian is home and in your care. Shower him with love and affection. Sometimes the family caregiver knows best over the "professionals". Hugs Jimbo

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