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Thread: Seeking advice from quads and caregivers

  1. #11
    Senior Member WM's Avatar
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    Quote Originally Posted by Shaun
    Hey its you!

    I have a few friends who function the same as the friend you described and there's never been a problem with them being on there own for 5 or 6hrs.You might be surprised what a person can learn and adapt to do when forced to on there own..
    Yes, it's me Shaun! I always show up when least expected---I like to keep an air of mystery about me! LOL!

    See, what you are saying, I kept thinking, but wouldn't say aloud, IS that being FORCED to do for one's self can sometime be the mother of all invention. I do know one night while his mom was in the hospital because he'd sent her over the edge and she'd had a nervous breakdown and he didn't want to wake his dad up (for some reason, dad gets mercy, mom gets none) that he managed to get a can of nuts out of a drawer and open them and eat them and he did all of it BY HIMSELF! He said it took him TWO HOURS to get them out, but he DID IT! THANKS for validating that point for me, as I'd never have said it myself outloud, not having an SCI myself.
    "I just want you to know, it was the best time ever." J.F.F.

  2. #12
    Senior Member taj2002's Avatar
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    WM,

    I don't think that it is unreasonable to leave this guy alone. My husband is C3/C4 with no arm function at all. We have some outside help but only a few hours a day and some days none at all. We also have 2 young kids. Sometimes they need to be picked up from school, taken various places, etc. If things like that come up, I leave him here alone. My husband and I have discussed the consequences of the worst case scenario and have agreed to live with these unlikely outcomes. If we were not willing to do this, then our children would suffer. I don’t go far away and make sure that I do everything for him before I leave. He has water on his chair. He is able to communicate with me via his computer. I always empty his leg bag before I leave and leave the door unlocked. Everyone in the neighborhood knows that if our handicap van is in the driveway then my husband is in the house. My trips are usually only about 30 minutes to an hour and so far all has been OK. His worst issue was when his backpack fell off his chair during a weight shift and knocked the sip-n-puff out of his reach. So in that case, he had to sit in one spot until I came home. He was in front of the TV so it was no big deal. I could never leave him for more than an hour really, but so far this has worked for us. He doesn’t mind the time alone, and then I can run to the store, go through a drive-thru, get gas, pick up the kids, all the little errands that have to be done daily. In some cases, it does take tough love. This mom should just say I’m leaving to run to the store, check him and then take off. Maybe if she started with short time frames to build up his confidence, in time she would be able to leave him for 4-5 hours. Really the mom needs to stand up for herself. Caregiving does not mean slave.

    Trish

  3. #13
    Senior Member WM's Avatar
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    Quote Originally Posted by quadman699
    i was like that when i first got outta rehab. and i was left alone at times i think it made me more independent
    Thank you quadman699! See, and that was when you were JUST out of rehab! He's been injured a year now and has been home from rehab a long time, which I KNOW a year not long to adjust to SCI life and a LOT of adjusting is still to come, but there is no way he would have been left alone JUST out of rehab. He SHOULD have been, I think, from what you guys are telling me. But, his family swooped in and started looking after him like he was an old dying granny with 3 days left to live! Natural, I know, when you love someone, but in the long run, not good if it lasts too long.

    I even talked to his mom a few months after he came home and it was apparent that she was not up for this full time and told her they needed to look into some outside help, at least part time. She said, "he doesn't want anyone but me taking care of him, he won't let anyone else." This is where the tough love Betheny mentioned should have come in.
    "I just want you to know, it was the best time ever." J.F.F.

  4. #14
    the mom needs to tell him its 4 his own good cuz she aint gonna be around 4ever

  5. #15
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    Hey WM!

    Nice to see you back!!!

  6. #16
    Senior Member WM's Avatar
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    Trish, your post makes me want to bust my friend in the chops! There your husband and family have an even MORE, MUCH MORE difficult situation to deal with and you've worked it out like the rational, caring, adults that you are, putting the children and family FIRST, and not just one person. ACCEPTING the what if's that most likely are not going to happen, but could, because what matters most is the FAMILY and not just one person. THAT is REAL love.

    This is what frustrates me about my friend and his family too---it's like they cannot SEE these alternatives to the 24/7. They don't have the capacity to sit and discuss this stuff because they are so wrapped up in catering to him and him alone. And I truly think that his mom gives in to him so much just to TRY to keep him pacified because she cannot emotionally handle the bitching if she doesn't do things "just so" or exactly when he wants them done. She gets so nervous around him. If someone bitched at me 24/7, I'd be nervous too.

    You are right, she's got to get tough with him and not tolerate this any longer. I'm writing down what you said at the end and giving it to her to keep in her pocket for when she needs some strenth---Caregiving does not mean slave! Thank you!
    Last edited by WM; 07-29-2006 at 09:01 PM.
    "I just want you to know, it was the best time ever." J.F.F.

  7. #17
    Senior Member WM's Avatar
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    Quote Originally Posted by quadman699
    the mom needs to tell him its 4 his own good cuz she aint gonna be around 4ever
    For real man! HE thinks she is though---it's obvious that he does, or else he'd be looking into alternatives for at least SOME of his care. It seems he'd be looking into alternatives just for HER sake, considering her emotional state and screwed up back! What if she--god forbid--was in a wreck tomorrow and died?---he'd be SOL!! Since no one else in his family except his ancient granny knows how to cath or BP him! And she is DEFINITELY not able to do this 24/7! She tries to help a little, but for God's sake---the woman is in her 70's! I'd not LET my ancient granny help me. I'd die first.

    It hurts me so badly too because MY mom died this year. He still HAS his mom. If someone talked to MY mom, the way he talks to HIS mom, they'd be spitting teeth and coughing up guts---end of story. He is BLESSED that he HAS his mom, even if she didn't do shit for him!

    I keep thinking---I have no right to say how I feel to him, because I don't have an SCI and it's not MY family. But, at the same time, when I hear him bitch at her, and see her locked in that house with no break, I want to scream at him---AT LEAST YOU HAVE YOUR MOTHER YOU EFFER! HE does not seem to mind INFLICTING us with having to HEAR his bitching at her----it's damned uncomfortable to say the least to have to sit and hear that!---So, I'm thinking, SCI or NOT, he inflicts this on ME, maybe he needs to be inflicted with MY thoughts on it! Maybe, SCI or NOT, I DO have the right to say something.
    "I just want you to know, it was the best time ever." J.F.F.

  8. #18
    Senior Member WM's Avatar
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    Quote Originally Posted by shelley
    Nice to see you back!!!

    Thanks Shelley! Nice to see you too! You know me---I comes and I goes! usually with a massive amount of bitching upon arrival!!
    "I just want you to know, it was the best time ever." J.F.F.

  9. #19
    Senior Member WM's Avatar
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    Before I turn in for the night, I just wanted to say I'm sorry if I sound angry and upset---I AM angry and upset, but I don't want to bring anyone down with it, and that was not my intent when I made the first post!

    Thank you all so much for your input and advice! All your responses were SO helpful! Please if anyone else has anything to say, shoot! I need all the input I can get on this!

    Again, I'm sorry for being such a bitcher! I just kind of let it all out.......
    "I just want you to know, it was the best time ever." J.F.F.

  10. #20
    Senior Member WM's Avatar
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    a big favor to ask!

    Okay, a very nice lady member here made a suggestion to me that I thought was a GREAT one! Would those of you who replied/and anyone else who reads this, write a letter to my friend and/or his mom, explaining what it was like for you after you were injured, concerning any difficulties you had, how you overcame them/dealt with them, became more independent, learned to deal with fears of being left alone, if you had them, etc. Anything at all that you learned on your journey, or are still learning, that you think would help someone in their position. For caregivers, can you tell her that it's OKAY to leave him alone some, and why it IS okay, and how you go about leaving your person with SCI alone, and anything else you think someone in her predicament should be told. Tell her that it's OKAY to take care of HERSELF too, no matter what ANYONE else thinks of her for it, or tells her. I don't even know what all to ask for---you know that better than me.

    I know what I would say to both of them, but from ME it's just bullshit because I am NOT in their situation. You have been there/are there. You have the knowledge and if I give them your knowledge, I give them your power to heal and change.

    I know this is a big request but I will love you for it! I truly believe what YOU have to say will help them so much.

    If you write a letter to him could you just start it with something like "Dear Friend" and to his mom something like "Dear Caregiver"? I don't feel I should give their names without consent.

    Normally, I would not be "butting in" to a situation that is not truly mine to butt into, but these folks need help in the worst way and have NO informed support in this small town we live in. Like I said, my opinions are really worthless because I'm not in their situation. My guy with a sci is a para and I know how I feel when AB people who maybe have a friend whose dad's, brother-law's, mother's, best friend's, coworker, just happens to have an SCI too, and so the person I know acts like they know everything ABOUT SCI and they tell me stupid stuff like how my guy with SCI really should not be feeling any pain because he can't "feel". Know what I mean? I don't want to BE that person.

    If you don't want to post a letter here, I have my PM's turned on. I intend to take the letters I get and type them up so that they aren't in internet format and give them to them. They can hate me or love me for it, but I feel that I would not be a good friend to have access to experts on this subject and not take advantage of procurring all the info I can from them to help my friends that I love so much.

    Thanking you in advance for even reading this long post and even more for a letter/reply!
    "I just want you to know, it was the best time ever." J.F.F.

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