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Thread: Just want to talk

  1. #1

    Default Just want to talk

    In my life, I have a lot of people caring for me. I have 4 caregivers (one for weekdays, one week nights. One weekends and one overnight) basically had 24/7 care as long as I can remember. But I have to be my adult self with them even though they bathe me, diaper me, feed ne, dress me and help me in the community everyday. What is missing is the emotional side of things for me. It's hard to feel like an adult knowing that I may poop myself any moment now.

    I don't work and I may never and the prices mommies charge for thier care is just crazy.

    I struggle to manage my needs on one hand, my baby desires on another and being my aides employer on another.

    I am telling you all this because I just want to talk to someone outside my daily life

  2. #2

    Default

    To be completely honest, I think many of us who read this post are wondering a couple of things:

    - Are these caretakers looking after you pro bono or is this a nursing situation?
    - Is this just incontinence or a disability that is much more severe? (my assumption is a much deeper severity if you require 4 different caretakers throughout the week)
    - Do these caregivers indulge in your babyish desires at all or are they strictly professional?
    - When you are looking for someone to talk to, are you looking for a desire for friendship, a need for a relationship, a want for a leisurely pen-pal or something romantic? Or are you just throwing yourself out there wondering what will come your way?

    I don't mean to have this interviewer persona which may push you away from feeling comfortable, but almost everyone here appreciates and understands honesty as well as clarity. Feel free to answer as much or as little as you like, but take into account that people want to feel like they matter, so even in simple chatter, they want a purpose behind it. If that purpose happens to be simple socializing and BS then so be it. But at least people know what they're getting into.

  3. #3

    Default

    Thanks for your questions. I have a disability, cerebral palsy. Through my 4 caregivers I have close to 24 hour care in my own home. The aides are provided by a local agency through Medicaid funding. I need help with most things and because I am a fall risk I can't be left alone for long. My caregivers are professional although friendly.

    I am just looking for whatever i find. I would love to have friends who understand my ab desires.

    I am also my caregivers employer because I choose who works for me, I assist in training them on daily routines, I approve thier timesheets and I fire them if I need to

  4. #4

    Default



    Quote Originally Posted by CPDude View Post
    Thanks for your questions. I have a disability, cerebral palsy. Through my 4 caregivers I have close to 24 hour care in my own home. The aides are provided by a local agency through Medicaid funding. I need help with most things and because I am a fall risk I can't be left alone for long. My caregivers are professional although friendly.

    I am just looking for whatever i find. I would love to have friends who understand my ab desires.

    I am also my caregivers employer because I choose who works for me, I assist in training them on daily routines, I approve thier timesheets and I fire them if I need to
    I think it's great that you're getting the care you need to go through life. That's really a lot to have, and more than what some other people have right now.

    And if you're looking to talk about your AB desires, you're in the right place. It's hard and maybe a little inappropriate to get caretakers who are working a job to be part of AB things, but there might be other people out there you could find to participate with you, sometimes over the Internet, as a lot of people here will attest.

  5. #5
    BrandonSleepypuppy

    Default

    If you need somebody just to talk with, ab or non ab, I hold great conversation and am a great
    listener. PM me and ill respond ASAP. I am on daily

  6. #6

  7. #7

    Default

    Hey CPDude. Whilst I don't have CP myself, I have a muscle-wasting disease which means I also struggle with day-to-day things, and though I'm fortunate that it isn't as severe as some other conditions, there are times when I feel very frustrated that I have to rely on others to help me function physically.

    I think it's a difficult dichotomy which ABs with physical disabilities face, that it's frustrating not to have the opportunity to be an adult with full independence, yet there's a part of you which gets so irritated at trying to live an adult life amidst so many difficulties, that you just want to go back into baby mode altogether, and have everyone treat as if you're a baby/little.

    If you want to PM me for a chat, feel free to do so anytime.

  8. #8

    Default

    One thing that I struggle with is that my speech is getting worse.,and some people in the agency (ones who don't work with me everyday) wonder why I'm not more independent

  9. #9

    Default



    Quote Originally Posted by CPDude View Post
    One thing that I struggle with is that my speech is getting worse.,and some people in the agency (ones who don't work with me everyday) wonder why I'm not more independent
    Do you mean that your independence is affected by your struggles with speech? If so, it's worth just mentioning that to people in the agency who aren't aware of your CP, or the effects it has.

    It isn't a great deal of fun disclosing medical issues to other people, especially if they're just colleagues and not close friends, but I think you'll feel more settled at work if the people who are around you have a general understanding of your situation. I think most people are decent enough to understand, especially if you make the effort to communicate it to them one-to-one (maybe you could send them an email explaining, if you think you'd struggle to explain yourself through speech)?

    If I've misunderstood your situation, feel free to ignore the above advice!

  10. #10

    Default

    hi CPdude, I just wanted to say hi and let you know that I'm available to talk if you're interested I'm always up for making new friends as well as helping individuals work through some problems. I'm a person who is very well-versed in the disability world. I have my own so the disabilities including a lower back injury that made me incontinent over 10 years ago as well as my own learning disabilities. But I have not what the disabilities control my life I've been able to take my own disabilities and become an advocate for individuals who are disabled or families who have children who disabilities and am able to fight for them to achieve their needs and rights. One thing that you mentioned was your speech is getting worse have you considered getting a referral to a speech therapist for an evaluation and some therapy just a thought for you. If you're interested in chatting more hit me up in the p.m. and I can go ahead and give you my Skype information through private message

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