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Thread: for those who can't change themselves

  1. #1

    Unhappy for those who can't change themselves

    How do you manage?

    I have required assistance with toileting in general for several years and never really was able to change my own diapers. Early on when I still had some coordination in my arms (I have muscular dystrophy) but now that's mostly gone except some hand and wristmovement

    I have been trying to be empathetic with my care givers because I'm sure it isn't easy for then either. I get changed by my husband, my mom, my nurses and staff at the adult medical day care facility I go to while my husband works

    Some people like my husband and the Rn's well be stoic, professional, and matter of fact.

    Sometimes my mom cries while changing my diaper. I think it makes hersad. She has been doing this a lot the past few months

    And some like the staff at the care program I go to, wipe my bottom like they're scrubbing a cast iron pan, they're in a hurry and don't care if they're rough and it hurts. I'm a sexual abuse survivor and it is really triggering. And the fact that I feel so paralyzed when someone's touching me down there just triggers more

    How do you work with the people who change you

  2. #2

    Default

    I'm really sorry you're in that situation. Never been changed by someone else, so I have nothing to add here other than my best wishes for you and your family.

  3. #3

    Default

    I'm really sorry about your situation, but I would let the chair givers know that they are being to rough on you. Changing and cleaning you is part of their job. I'm sure they don't like doing it any more than you like them having to do it but it, is what they are paid to do, so they should do in in a matter that suits you and makes you comfortable as can be. Their are things I don't like about my job, but I still need to do them and in a professional manner that suits my customers.

  4. #4

    Default

    Yup, talk to them, if you can manage to use a computer, I'm quite sure you can tell your caregivers that they hurt you when they clean you up, maybe they just think you don't feel anything down there so they aren't careful because they don't know you are sensible down there. Best relations start by talking to them first I would say, if they're not complying, you can even ask to talk to their supervisor.

  5. #5

    Default

    I'm sorry to hear the Multiple Sklerosis has afflicted you that much by now.

    Anyway, nothing justifies being handled that roughly. You need assistence and nurses usually are in a hurry or a kind of routine, where they tend to forget that they're still with living and feeling beings. Just mention it, say it aloud.

    At best mention it to your husband at first, since you also made a thread a while ago about your relationship. So you're killing two birds with one stone. You know then how your husband feels in general and you can talk about the issue about how you feel you're being thread.
    Especially since you're a victim of sexual abuse I think there are many possibilities to get a bit of comfort regarding such intimate tasks with your care.

    Also, if you're on the subject of talking about it, perhaps talk to your mother too. Since she's crying as of lately there may be a lot to discuss, or some things that she's got on her mind.

    Best of luck!

  6. #6

    Default

    I"m so sorry that all of this has happened to you. My wife is diabetic and has been in and out of hospitals a lot in the last ten years. She's in the hospital as I write this, having had the front part of her foot amputated. We have learned that you have to be pro-active and speak up for yourself. My wife has been given wrong medication, and has had to remind nurses to give her the antibiotic she's supposed to get every 12 hours.

    There's no excuse for not treating you with the utmost care. If they are too rough, tell them and if they don't improve, talk to their supervisor. There are good care providers and there are terrible ones. You should be their first concern...always.

  7. #7

    Default



    Quote Originally Posted by daLira View Post
    I'm sorry to hear the Multiple Sklerosis has afflicted you that much by now.

    Anyway, nothing justifies being handled that roughly. You need assistence and nurses usually are in a hurry or a kind of routine, where they tend to forget that they're still with living and feeling beings. Just mention it, say it aloud.

    At best mention it to your husband at first, since you also made a thread a while ago about your relationship. So you're killing two birds with one stone. You know then how your husband feels in general and you can talk about the issue about how you feel you're being thread.
    Especially since you're a victim of sexual abuse I think there are many possibilities to get a bit of comfort regarding such intimate tasks with your care.

    Also, if you're on the subject of talking about it, perhaps talk to your mother too. Since she's crying as of lately there may be a lot to discuss, or some things that she's got on her mind.

    Best of luck!
    yeah.... talking to my mom is hard for me. there are so many things in my life i probably should have told her. I started keeping a lo tof my feelings from her when I was 13 and was sexually abused, she never ever found out. In fact, she thinks the perpetrator is a great person who changed my life for the better (he was a child psychologist). She is a good mom who has tried to do her best, but at this point I'm not sure if I could ever tell her something so big.

    my husband does know about the abuse and he is understanding about it. i'm not always good about telling hospital caregivers because I don't want my history of abuse to go back to my mom. but i can see if i can be more proactive about telling the staff how they should handle my changes. usually when it's happening my mind goes somewhere else. the care i receive there is otherwise pretty good, considering it is an institution

    - - - Updated - - -



    Quote Originally Posted by dogboy View Post
    I"m so sorry that all of this has happened to you. My wife is diabetic and has been in and out of hospitals a lot in the last ten years. She's in the hospital as I write this, having had the front part of her foot amputated. We have learned that you have to be pro-active and speak up for yourself. My wife has been given wrong medication, and has had to remind nurses to give her the antibiotic she's supposed to get every 12 hours.

    There's no excuse for not treating you with the utmost care. If they are too rough, tell them and if they don't improve, talk to their supervisor. There are good care providers and there are terrible ones. You should be their first concern...always.

    that sounds like it would be so painful I'm sorry your wife has to deal with that, too, on top of dialysis. how long does she need to be there

  8. #8

    Default



    he was a child psychologist

    WHAT? My god that makes my blood boil to no end.

  9. #9

    Default



    Quote Originally Posted by Existential View Post
    yeah.... talking to my mom is hard for me. there are so many things in my life i probably should have told her. I started keeping a lo tof my feelings from her when I was 13 and was sexually abused, she never ever found out. In fact, she thinks the perpetrator is a great person who changed my life for the better (he was a child psychologist). She is a good mom who has tried to do her best, but at this point I'm not sure if I could ever tell her something so big.

    my husband does know about the abuse and he is understanding about it. i'm not always good about telling hospital caregivers because I don't want my history of abuse to go back to my mom. but i can see if i can be more proactive about telling the staff how they should handle my changes. usually when it's happening my mind goes somewhere else. the care i receive there is otherwise pretty good, considering it is an institution

    - - - Updated - - -




    that sounds like it would be so painful I'm sorry your wife has to deal with that, too, on top of dialysis. how long does she need to be there
    With her foot being sewn up tomorrow, I'm hoping she'll go home on Tuesday, but as of yet, we don't know. She's in good spirits as we got good news on Saturday. I'm sure you know, sometimes a little good news makes all the difference and goes a long way. We take what we can get that's good.

  10. #10
    frodo

    Default for those who can't change themselves

    I'm sorry you get less than perfect care. I'm a little confused, do you have MD or MS? I have MS and can relate but have little experience with MD.

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