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Thread: If I Ever Said "Back Off"-This Bud's For You

  1. #1

    If I Ever Said "Back Off"-This Bud's For You

    Below, a blog entry from the website "Crip College", written by the mother of a paraplegic son. I'd forgotten all about this site until KLD linked to it today. Although it seems the family has moved on from the site, there is a lot of GREAT stuff on there, and it is all still pertinent.

    When I chastise caregivers here on CC for overly coddling their loved ones with a SCI here on CC, I sometimes feel like I am brutalizing people that are already worn down beyond what should be expected of a human. Please believe, that has never been my intent. It is always frustrating to keep repeating oneself, and sometimes it feels like talking to various brick walls with different names.

    I liked how this woman expressed what we so often crudely say, fumbling to make ourselves understood. No SCI here is encouraging you to abuse or neglect your loved one, not even jfuente. We're encouraging you to give them a chance to get better!

    From a mom's perspective-God willing, we won't always be here. No mother plans to bury their child, so that child should be prepared to survive without you.

    From any loved one's perspective-Same thing. If your SO can't make a sandwich or maintain their bowels, you need to figure out a way to make it happen. This "way" may involve the occasional or frequent employment of an outsider-if so, so be it. Your paralyzed loved one needs to know what is involved in that process...how to pick up the phone, look up Craigs List, interview, employ, manage benefits or payment, instruct, terminate. Every human adult needs to be able to pay the family bills. Every human adult needs to contribute to the maintenance of the family unit, even if it requires some creativity to keep them involved. Somebody trusted by kids can be a listener, and that is a valuable thing in and of itself!

    Nobody wants to believe that if they died tomorrow, the result would be a collective sigh of relief, a few tears and the family finally REALLY living their life, at last. As a newly injured (or long-time injury, but overly dependent) person, barring brain injury, we are cognizant of our place in the world. It helps nobody to feel that place is a gaping black hole of need.

    So if I tell you, or your loved ones, that you need to be folding towels or trying to twitch a muscle while you lie abed healing, I mean no harm.

    The Army said it best: Be all that you can be. If you are a caregiver, try to help facilitate that. If you could know the people I do, you'd see potential instead of a vacuum of need longing to be filled with your energy.

    Eh, I'll shut up and let you read what this woman said. I just hope you'll really THINK about it. She is talking to YOU.

    Invalid - 9/26/2005

    "Have you looked up invalid in the dictionary? It means not well, weak and sickly, infirm. It can also (depending upon which syllable you emphasize) mean not valid, having no force, null or void. If you look it up in a thesaurus, you will see words like unacceptable and illogical. This is not a word that any logical person would want applied to them.

    Why then do family and friends of those who have spinal injuries persist in treating them as if they are invalids? I know why strangers do it—because they are most likely uninformed of how to handle the situation. Thanks to a lot of you, they are learning, but it’s happening slowly. However, those who are close know better. They can see that with the right attitude the person in the chair is very capable of success in life. Yet nearly every day I read or hear about a parent, spouse or friend enabling their loved one to be invalid.

    When someone is newly injured they are unsure about doing countless things. It is the responsibility of those who love them to support and assure them that many (most) every day tasks are still possible. What is difficult after the first week will be easier by the end of the first month and done automatically by the end of the first year. This is provided that the SCI is encouraged to do these things themselves. By rushing to facilitate their every need you are robbing that person of the dignity of learning how to do it on their own.

    Obviously, depending upon the level of injury, there will be some things that are difficult, perhaps impossible. I have learned not to assist with these things unless I am asked to. I have also come to realize that Christian is much more comfortable getting assistance from a friend than his mom. I understand and respect that.

    Like any minority group assimilating into society, it can be a battle. It becomes much more complex if the battle is lost before leaving home. It is up to family and friends to encourage the person in a chair to learn the skills required to become independent. If you do any less, or should I say more, you are letting them down."


    Reprint From Website Crip College
    9-6-2005
    Section "Mother Knows Best"
    Title "Invalid"

    Permission pending
    Last edited by betheny; 07-12-2009 at 02:33 PM.

  2. #2
    Great post. It's from the mother of Christian, the guy who founded the site. She has always been a fantastic contributor to that site, it's a shame if she doesn't write anymore.

    Cripcollege is how I found CC! A link in a post to someone having a rant here (possibly Bob Clark, can't remember).
    C5/6 incomplete

    "I assume you all have guns and crack....."

  3. #3
    Senior Member Kratos's Avatar
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    nice find betheny.
    http://www.facebook.com/ivicamaotze.rod

  4. #4
    amazing how many adult non injued people fal into the same scenario.
    used to come across grown men whose moms stil did everything for them
    cauda equina

  5. #5
    Dammit, I put this in the wrong forum! Meant to be in Caregiving! I'll re-post there, Rhino can you delete pls?

    NM, too many posts. Rhino, move to Caregivers por favor?

  6. #6
    Done
    C5/6 incomplete

    "I assume you all have guns and crack....."

  7. #7
    Quote Originally Posted by RehabRhino View Post
    Cripcollege is how I found CC! A link in a post to someone having a rant here (possibly Bob Clark, can't remember).
    Ahhhhh, the good ol' days.

    Bob.
    "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria

  8. #8
    Senior Member Jeff B's Avatar
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    It is lucky that I don't live with my parents they would always be trying to help when I don't need it. Seeing me struggle with anything kills them. My dad would probably chew my food for me if I let him.

  9. #9
    Good stuff, Bethany, and I agree wholeheartedly - in theory. I've received - and given- the advice myself. However, I think there needs to be a caveat that not everyone (both SCI and caregivers) fit into the 'mold'.

    I'll use Matt as an example - He's functioning C6-7 now, initial injury at C4-5. According to the 'mold' he should be well on his way to being almost completely if not completely functionally independent. But - enter the nasty little curveball called a TBI with seizures - and it's a whole new ballgame. He does a great job most of the time with things like organizing his meds for the week, and calls the pharmacy to refill - but if the pharmacist says 'no more refills', he's stymied - can't connect to thinking, oh I need to call the doc for a refill. And then forgets to tell anyone. Still forgets to weight shift - again, TBI. If he's questioned in a doc's office, can't articulate symptoms or problems. Not because of avoidance, but because of the TBI. Physically - even though his seizures are partial complex, and not grand-mall, he sometimes gets cyanotic and atonic with them; he's actually stopped breathing a few times and has to get 'pounded' to get going again. He gets dysreflexic at the drop of a hat.

    Sooooo - we're in a place with him that straddles both sides; I do encourage/force/cajole for him to be as independent with ADLs as he can, but he can't be left alone. God knows, if he were alone and a fire started, I'm not sure he'd even process to call 911.

    Frustrating; yep. But we've come to realize 'it is what it is', and live life with the AA philosophy of 'one day at a time'.

    So I guess what I'm trying to say is everyone's different.
    Last edited by marmalady; 07-13-2009 at 08:46 AM.
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  10. #10
    Ah, good old brain injury. My mom had a stroke and partial frontal lobectomy in 83, when I was 23 and the "responsible child". So I know them well. A whole 'nother ballgame from straight SCI. But Marm, you're letting him try, and it is such a gift to him. I have no doubt you've worked on contingency plans for a time you won't be here. I'm I hope he appreciates it. Frustration comes w/ brain injury, so he may seem that he doesn't. But you're doing the right thing, letting him be all he can.

    A friend has a severely autistic brother. Their mother is a fireball, refused to allow him to be institutionalized when that was the general approach. He grew up, made it unpleasant at home until his mom relinquished him to a group home. He wanted to live "on his own"; against all odds, in his fashion, he now does.

    Yeah, all different. We all deserve the chance to try, is all I'm saying.

    I would have sworn I wrote "barring brain injury", in that first part...hah, I did. I'm the last to underestimate THAT complication. God, it has been 26 years since Mom's stroke, can that be right? It took all motivation from her. Removed her filters. She still rebels if I try to interfere, e.g. suggest she switch to a better doctor that is a family friend. Refused to give me POA, in case she met a man to marry (on welfare, in the nursing home, at 74.). She has this fear I'll control her. No idea why I'd bar her marriage, she has no assets, it's just a fear of hers I guess.

    Best to you and yours. I really do know that it is tough...
    Last edited by betheny; 07-13-2009 at 11:35 AM.

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