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Thread: Dealing with losing some dignity

  1. #1
    Forum Member Z3 Driver's Avatar
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    Dealing with losing some dignity

    Today was to be the first day of my personal carer . Its meant to be an hour each morning helping with showering , dressing and sorting out my breakfast. But as they were well over an hour late, sent a male not female , i had already managed the tasks.

    My problem is that im not sure i can allow a total stranger into my private life doing the personal cleaning stuff. Maybe im to proud a person or is it that the disease is impacting my life more than im prepared to accept .

    Its hard enough letting a loved one, but at least they have seen all the bits before

    Unless i find the carer understanding then its going to be a long rocky road for me. Im not an object they are helping im a 41 year old proud fella with feelings.

    All i need is a small lottery win and Claire can finish work and be at my call..

    now im in trouble

    any thoughts ??
    And in the end its not the years in you life its the life in your years .

  2. #2
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    I guess we are all learning to adjust to the various ways that mnd forces us to admit life is getting tougher but I cannot imagine how I will feel when I am in your situation. However, I recognise that, as an older woman, I am not going to have to deal with the same feelings as a fella like you. I have two sons about your age. I hope that each day will bring you acceptance and maybe the road will not be as rocky as you are anticipating.

  3. #3
    Forum Member Chris's Avatar
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    I am pretty close to the same situation myself and do worry about how i will feel when a stranger has to do these thing. Polly has so much on her shoulders and i think getting help in a morning will make such a difference, its the best way i can relieve her pressure so i guess it will be a case of grin and bare it! after all it is something we perhaps have to get used to. A lottery win would certainly help
    YNWA............Trying to stay positive..........

    Website http://chris-versus-mnd.weebly.com/

  4. #4
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    I am very lucky I suppose as work from home 30 hours a week, only have to leave Mick for a 4 hour period on a Monday morning so do all what is needed ourselves. Granted it is hard work ( Mick cannot do hardly anything for himself at all these days e.g: transfers, dressing, washing, showering). Sometimes especially Monday mornings having to get up at 5.15.am just to ensure Mick has done his ablutions and is comfortable down stairs with all his urine bottles and fluids for the 4 hours I'm away, can be quite stressful. But at least he has kept his dignity as you say and he has stated he does not want any outside carers, although I am sure if I could'nt carry on doing it all he would have to submit to others coming in to help. He knows I am only 20 mins away and that work comes second these days. xx Ang

  5. #5
    Jacqui Priestley
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    Guys, I have had help for an hour in the morning now for 8 months. It has been a godsend as my husband is still working. The carers don't bat n eyelid and I like their chat. If you can find one who will laugh with you through the less dignified bits even better. I say get all the help you can and save your energy for the fun things you want to do.

  6. #6
    Forum Member jadedjohn's Avatar
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    How do you get a carer? My wife works full time, and financially were hanging on as long as possible, i can just about manage at the moment but it won't be long......
    http://www.jaded-john.net

    First onset Oct 2009, Dx'ed Oct 2010 at the age of 42

  7. #7
    Forum Member Z3 Driver's Avatar
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    John it was the social worker who visited me from Rotherham Council. The funding at this point come from the social care fund at the council, then moves over to health care as i progress which is funded from another source. It maybe i might be asked to contribute to the cost of this currently 89.00 but haven't as yet been means tested as i haven't yet sorted out things with my employer.

    this is my understanding of how it works so maybe wrong.....

    i also get a physio home visit too, which the social worker organised.
    And in the end its not the years in you life its the life in your years .

  8. #8
    Forum Member sarahezekiel's Avatar
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    The first time is always the worst! I've probably had over 100 carers and don't think about them showering me or wiping me after the toilet. I worry more about them doing it the way I want now! I think it's important to specify whether you want a male or female carer. I've never had a male carer, although male nurses helped me in the hospice. I didn't mind but don't think I'd feel comfortable at home.

    If the carers are experienced they will be used to helping with personal care. I know that the thought of it is really hard, but the reality is much easier.

    John, do you have a social worker? If not, your GP might be able to refer you. I think you can email your council too. It's best to get everything organised now.

    Best wishes

    Sarah

  9. #9
    Forum Member jadedjohn's Avatar
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    Hi Sarah, no I don't have a social worker, I have a ot who works for social services though, and a physio who my previous employer kindly pays for!

    John
    http://www.jaded-john.net

    First onset Oct 2009, Dx'ed Oct 2010 at the age of 42

  10. #10
    Forum Member sarahezekiel's Avatar
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    Hi John

    Your OT might be able to help. Or if you have a visitor from the MNDA, I presume that they'll know? It's good to have a social worker, because if you need more care in the future, they can apply.

    Sarah

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