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  1. #1
    Forum Member Pinklollie's Avatar
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    A new low

    I had to tell my lovely Mum that she smells tonight.

    I'm more devastated than she is. This disease strips people of their dignity and I HATE HATE HATE it!!

    My poor Mum had a fall this evening, she was left on the floor and gasping for breath along with being desperate for the toilet for 2 hours. The paramedics were fabulous and treated my Mum with respect as well as having some great banter with us all during such a difficult time but all I could think of was my Mum smells and they're going to think we aren't looking after her.

    The truth is, I will do almost anything for my Mum but I can't toilet her or shower her, I just can't and I feel so bad I feel like I'm a selfish useless daughter because I won't do these things.

    When I told my lovely Mum that she smells she was so gracious and thanked me for telling her! Thanked me!
    I mentioned speaking to social services to find out what care packages are available but she resisted everything I said, giving excuses or reasons why it wouldn't work. She's obviously not ready for it yet but I don't want her to smell and yet I'm not willing to wash her.

    This is beyond hopeless.

    I don't know what to do.
    WE MAY NOT HAVE IT ALL TOGETHER BUT TOGETHER WE HAVE IT ALL xxx

  2. #2
    Forum Member Terry's Avatar
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    Oh Pinkloline;

    I don't know how I would get on if the ball was on the other foot. Luckily I have very few problems so it is rare that my wife has to clean my bum. But my 21 year old son has washed me very occasionally when my wife is elsewhere.

    She needs washing one way or another, please.

    All the best, Terry

  3. #3
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    Pinklollie, tomorrow, see if you can get on the phone to MND Connect and speak to them honestly about it. I am sure this is not the first time they have been faced with this particular problem. It has always been my one fear that I will not be physically capable of keeping myself clean. We have just had a wetroom and a bio bidet done so I do have an element of independence now. Terry is right, she needs someone to help care for her. Sometimes you have to swallow your pride and accept the inevitable. Hope you get it sorted out. Much love Joycie

  4. #4
    Forum Member Pinklollie's Avatar
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    Thank you, I'm utterly heart broken. I feel like I want to just organise a carer to come and wash her but I'm also very aware that choices are being taken from her every day so I want to respect her wishes.

    I just think this might be the one time I have to make her a bit angry with me and go against her for her own good.

    I'm going to make the call tomorrow to ask for help even though she's says she doesn't want it.

    Thank goodness for this forum where I can be real.

    I hate this.

    Thanks for your advice and support as always xxx
    WE MAY NOT HAVE IT ALL TOGETHER BUT TOGETHER WE HAVE IT ALL xxx

  5. #5
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    I remember dreading having to help shower mum long before the MND diagnosis. I was angry that I had to do it which was so selfish of me. However once I'd done it I don't know why I was so worried. You have to do what you think is right for you and your mum.

  6. #6
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    have you contacted your local hospice, i am sure they could help. They might be quicker to help as it needs to be done soon otherwise theres a high risk of skin infections. I dont want to sound blunt but cant you just suck it up once and help her to get clean, just think of the thousands of times she washed you.
    Honestly though skin infections can be life threatening!
    sorry if i sound harsh.
    mik

  7. #7
    Forum Member Pinklollie's Avatar
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    I understand what you're saying Mik but I don't think I can do it, she hasn't even asked me to do it. It's just that my Mums a big lady, she weighs 19 stone so I couldn't physically move her aroun to wash her properly, she has some skin folds too that would be tricky to wash and dry and on a selfish note, I don't want to have to wash my Mums intimate areas. I feel like if I do it once I will be expected by the family to do it all the time.

    I know I sound utterly selfish but I'm being honest, I adore my Mum but I feel if I had to wash her I would lose myself.

    Thanks
    WE MAY NOT HAVE IT ALL TOGETHER BUT TOGETHER WE HAVE IT ALL xxx

  8. #8
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    I understand exactly where you are coming from It is embarrassing for you and for Mum. Make the phone call to MND, do as Mik says and contact the hospice -that is really good advice! Your Mums health comes first, doesn't it? I hope it sorts out. Don't feel embarrassed about having this chat with us, Pinklollie. That is what we are here for! Let us know how you get on. Much love Joycie x
    Last edited by willsandco; 31st March 2015 at 09:22.

  9. #9
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    Hello pink,

    I can understand where you are coming from here. If you are squimish and uncomfortable cleaning somebody else then don't beat yourself up about it. NO don't feel guilty, if a lot of Carers were honest they probably find it difficult as well. We didn't ask or train for this, and I feel very strong that you must not go on any guilt trips, we are the way we are.
    My husband has a bed sore discovered yesterday by the nurse, she looked at me as if I had 2 heads, I couldn't see it because of where it is on his bottom. I went on a real downer, but then I pulled myself together and thought "hey, no. I'm doing my best and if the government gave free help to Carers and we received a little more help than a fleeting visit and a useless phone call maybe we could all cope a little better!
    Of course you know your Mumneeds to be kept clean so how about ringing the hospice tell them how you feel, maybe they will help and advice you. Would you if somebody else bathed her once or twice a week be happy to wash her hands, face, arms and feet.
    If you wish message me but don't carry this guilt on your own, throw it away it is of no use to your lovely Mum who you clearly love dearly or to youself.

    hugs Sringtime x
    Evil triumphs when good men stand by and do nothing.

  10. #10
    Forum Member pete's Avatar
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    Hi Pink,
    I know it won't help knowing this ,but your not on your own feeling the way you do, hell I hate asking for any help, but the simple fact is we are all very unique ,and not everyone can perform intimate washing of a partner or worse a parent, I had to smile when I read the post about you being washed as a youngster by your mom, that's a world away from you doing the same for you mum.

    I think Miks suggestion of asking a hospice if they would offer help is a very good idea , but that wont help with daily cleansing, and at nineteen stone mum needs at least two carers/nurses to deal with her needs.

    Whatever you must not blame yourself for feeling the way you do.trust me your not on your own by any means.

    All paramedics are great at doing a very difficult task, but I doubt if they had any thoughts about the level of your care ,they have seen it all before many times. I hope you get the help for your Mum as she deserves to get care from professionals who know how to lift and deal with her needs, again it shows how poor social care really is when it's really needed, have you talked to connect they might know who to speak with.
    Best wishes
    Pete
    All I need is a miracle

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