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Thread: Influence in caring for a disabled brother and father

  1. #1
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    Influence in caring for a disabled brother and father

    Once again, not sure if this is the right section for this post. If not, feel free to move it.

    I don't post very often, but I feel like in a few places I've mentioned my family situation. I have a father who has multiple sclerosis (ms), he is now at a point where he can no longer walk at all. I have a brother who was diagnosed as high functioning autistic at the age of 5, I was 8 at the time he was diagnosed. My mother is the primary caregiver and breadwinner, so in this period of time where I'm finishing my graduate degree and working full time, I've moved home to try and help them out as much as possible. Admittedly, an added bonus has been no rent, but that's beside the point.

    I have no qualms about giving them my time, they're very understanding that I have my own life and goals. I think there was a time where I felt a certain amount of jealousy or just the overall feeling that the universe had screwed us, and I don't blame myself for having felt that way in the past. Luckily, I am able to find a sense of pride in helping them now.

    But in recent days, I have realized something. Following a failed relationship and a question as to why I'm so ready to relinquish authority to others, I have come to realize for a very long time, I have subtly believed that I too am developmentally delayed or will one day be disabled. For the sake of the conversation, I was tested multiple times after my brother was diagnosed with autism and it was determined that I was not. As far as MS goes, I've been told it's not genetic, though I don't claim to really be much of an expert in the subject.

    But when I think back on my life, I've started to see where part of me believed this. When I was younger and I would struggle with a class or a job, while I didn't make excuses to get out of having to do the work, a part of me simply believed the reason why I had trouble was because I had an undiagnosed delay. On the other end of things, there have been times where I feel I have to do as much as I can before I turn 45 (the age my father was when he was diagnosed) because I will also lose the ability to walk.

    I want to make one thing absolutely clear. I logically know this is not how disability works. I'm not looking for someone to convince me that I'm not developmentally delayed or that I will develop a disability at some point, I think I'm simply looking to see if anyone out there has ever dealt with this sort of feeling. I've tried multiple google searches on this but I don't think I'm choosing the right keywords.

    Has anyone else here who has provided caregiving or assistance to a sibling or parent ever dealt with this sort of thing? A subtle but present thought in the back of your head that you share or one day will share the disability?

    Thank you for your time.

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    Forum Supporter ~Seraphim ~'s Avatar
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    I would think it would be common to think you might get MS or whatever ails a parent. For instance 99% of my momís family dies of cancer. My husbandís family has a high incidences of Parkinsonís. I fear both diseases. That I might get cancer and my husband might end up with Parkinsonís with dementia like his dad and grandma.

    Do I fear autism? No. My son is autistic. I donít see it the same as illness and it doesnít kill you like diseases do.

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    Originally Posted by ~Seraphim ~
    I would think it would be common to think you might get MS or whatever ails a parent. For instance 99% of my momís family dies of cancer. My husbandís family has a high incidences of Parkinsonís. I fear both diseases. That I might get cancer and my husband might end up with Parkinsonís with dementia like his dad and grandma.

    Do I fear autism? No. My son is autistic. I donít see it the same as illness and it doesnít kill you like diseases do.
    I hope it goes without saying that I'm not trying to mischaracterize or speak badly about autism. Obviously I love my brother and want the best for him.

    One reason why it's been hard for me to talk about this is because I'm always afraid that I'm demonizing his condition.

    I don't believe I am, but I could totally see how it could be taken that way.

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    Originally Posted by GreenGoose22
    I hope it goes without saying that I'm not trying to mischaracterize or speak badly about autism. Obviously I love my brother and want the best for him.

    One reason why it's been hard for me to talk about this is because I'm always afraid that I'm demonizing his condition.

    I don't believe I am, but I could totally see how it could be taken that way.
    No, I understand you are not. I am just saying I donít fear it because it does not cause death. It is not a disease. Conditions or diseases that cause death are pretty scary . Know what I mean? Plus I can see why you would fear those conditions .

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    Platinum Member itsallgrand's Avatar
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    Did you ever receive any councilling or therapy for trauma? I'm going to ask that first before anything else.

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    Originally Posted by itsallgrand
    Did you ever receive any councilling or therapy for trauma? I'm going to ask that first before anything else.
    Yes, I was going to say that too because being raised in a household with debilitating conditions can be traumatic .

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    ::Hugs to You::

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    To answer the question about counseling, no I haven't. Believe it or not, I'm 27 years old and I've had numerous friends in the psychiatric community as well as friends who have attended therapy, and this thread was the first time that it had even been suggested to me. I guess I was always looked upon as the healthy one, I'm only now starting to see how damaging that could have been.

    That said, I tried something tonight that I've never tried before.

    As hokey as it sounds, I locked myself in my room and stared at myself in the mirror. To the best of my knowledge, I know deep down that I was never diagnosed with a developmental delay, so by that some point, I know there is absolutely no reason for me to believe that I somehow was delayed but no one ever told me.

    I stared at myself and repeated over and over again "I do not have a developmental delay"

    And, as surprised as I am to say it, it actually worked. That leads me to believe that I already knew this was the truth and had already accepted that, but somewhere inside of me, this fear had been lingering for a long time.

    I don't mean to imply that having such a delay would be a bad thing, that's not what was wrong with this situation. What was wrong was that I had begun to believe something that wasn't true, based purely on insecurity.

    So......I actually feel like I've taken the first steps to resolving this.

  10. 06-06-2018, 02:17 PM

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    Platinum Member Wiseman2's Avatar
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    Sounds like caregiver burnout. Read up on that.

  12. 08-31-2019, 08:37 AM
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    My mother had a debilitating, chronic autoimmune disease that led to clinical depression that caused her death.

    Yes, I fear that I will start acting like my mother. Her mother behaved the same way and when it was directed at my mother she lamented that very same behavior that she imitated later in her life. I mean, she used the exact same words my grandmother did. So of course I fear I will start laying guilt trips on my kids and accusing them of not loving me and wanting me dead like she did.

    The disease she had is also familial. I haven't been tested in 20 years, so I plan to ask my doctor to test me soon.

    I get it, I absolutely do. And yes, caregiver burnout is a definite thing. It's exhausting.

    As for autism, the IT technician where I work is high functioning autistic. His laser focus on detail actually makes him good at the job. He's socially awkward and isn't a great conversationalist, but that has zero effect on his ability to do the job.

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