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Seeking advice from quads and caregivers

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  • #16
    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, 09:01 PM.
    "I just want you to know, it was the best time ever." J.F.F.

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    • #17
      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.

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      • #18
        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.

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        • #19
          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.

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          • #20
            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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            • #21
              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..
              Totally agree. Cathing is the main issue. Find a new way to manage that and I think he'd begin to relish the freedom
              C5/6 incomplete

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

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              • #22
                WM if he's got enough function to get a can of nuts from a draw and open it he could prob do LOADS more.....possibly even cath himself. He does need a wake up call but I also remember being very scared only about nine months ago when I was first left alone. Now I live alone
                C5/6 incomplete

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

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                • #23
                  Situations like this upsets me..

                  Originally posted by WM
                  I AM though going to tell her I've talked to some of my friends who are quads and that from what people who have been injured way longer than he has are telling me is that this staying under him 24/7 is bullshit and that me and her are leaving his ass and going out for a "girl day"!
                  PLEASE DO THIS IMMEDIATELY!! He doesn't deserve her kindness if he has to talk to her like that. That is VERY ungrateful. After all, it's HIS life, Not HERS. He may be angry because he "thinks" his life is hard, but her's is much much harder. He needs to understand that she is caring mother who is living life for herself and him. I'm only speculating, but if she feels a guilty about leaving him for a few hours, then she may be a lil co-dependent on him. Which is only going to make him more dependent on her, and her life more miserable.

                  When I saw how hard it was for my mom, I wanted to do things on my own. I didn't want to take away from her lively-hood(SC). She told me how much she appreciated the help and thoughtfulness I was giving her. I replied: "mom, I appreciate your help, but I'm not doing this for you, I'm doing this for ME."He'll never know what he can do for himself unless he tries. If he wants to do something bad enough, trust me he'll figure out a way.

                  She should probably look into state assisance for a home health aid to sit/care w/ him for atleast a few hrs a day.
                  "People Will Forget What You've Said, They'll Forget What You've did, but They'll Never Forget How You Made Them Feel" -Maya Angelou

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                  • #24
                    Chad has no movement or sensation below the nipple line and I don't like to leave him, but sometimes I need to for my kid's activities and often, my own sanity. He has an ECU that can call me and can call 911. The 911 operators here have him "registered" such that if ANY 911 call is made from our house, even if no one says a word, that they are to dispatch the full emergency crew asap. Your friend may want to look into that as it would make her son feel better probably (and her too). I would never leave him 5-6 hours because although he caths every 6 hours, it can be unpredictable, so the most I've ever left him is 3 hours. He has a cell phone that auto answers, so I call him every 15-30 mins while I am gone (it drives him a bit nuts). And he knows that if he does not speak back to me on the cell phone, that I will call 911. I think that is half annoying and half comforting to him! So even though technically it would be better for someone to be here with Chad *just in case*, the world is not perfect and for me to be a good caretaker, I MUST get out into the world and have some me time. When he's in his chair, we often split up at the mall and meet back at a certain place in an hour for example, so I get me time even if he is up and about. I'm a bit overloaded for time at the moment to write an actual letter, but you have my permission to send my post to your friend.

                    Ami
                    Wife of Chad (C4/5 since 1988), mom of a great teenager

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                    • #25
                      I would be scared in his shoes.
                      Before I got a few things back in the way of function, I was freaked to be helpless and alone.
                      I think the advice here about the plumbing is sound.
                      If he is in his chair anyway, a bag would take care of his issue.
                      Bowel mishaps will not kill you. Wear a brief that day and if sh** happens, deal with it. Skin barrier will prevent breakdown, as long as it is not a daily event.
                      A programmed wireless phone, attached to the arm of the chair, is a huge security blanket.

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                      • #26
                        Thank you Rhino, Zilla, Royalty and thenose!

                        Although I'm sorry anyone had to live with fear of being alone, knowing others did, and conquered it, I think will be encouraging to my friend, and gives me hope that he can be more independent, which will be good for the entire family.

                        Royalty, your mom is obviously a wonderful woman, because it's so apparent that she raised a wonderful, caring and independent son!

                        And yes, I'd say there probably IS a bit of co-dependency going on with his mom. I have to admit that I've gotten in that rut before with a relative who was very in need of having someone not only drive them, but go through the doctor visits WITH them. When it got to the point of them only needing a ride, not an extra set of ears/voice, I was still trudging in there with them, oblivious to my actually being "in the way" now. Being guilty of that myself I can see this in her, now that you mention it. Luckily for my relative and me, I one day thought and said---you really don't NEED me in there, do you? And they said---not anymore. It was HARD to get used to though after so long being "needed". But, better in the long run for both of us.

                        And the guilt thing---I'm sure his mom often thinks--what if---what if I leave him and something happens?---she will blame herself. She will have to work on that one, really so will granny and dad. The other day my guy with SCI was there just to hang out. Mom had to go out for something, so granny had come over to stay. My guy told granny she did not have to stay and give up her time,as she did have things she needed to do, that anything my friend needed, MY guy could do, cause he's only para. It was a bit of a struggle to get granny to go home. She was afraid to leave THEM there "alone"! Well, he finally convinced granny to go home, that they would TRULY be okay for an hour or so until mom got back! I think that's a start! And they got some "guy time" and could actually have a good one on one visit. Something my friend just does not get to have anymore since he got hurt.

                        I did not know about the ECU thing ZillaAmi (I'm guessing that stands for something like "emergency call unit" maybe?---and being able to set the deal up with 911! Thanks Ami, I'll let them know such things exist and help them look into it. I'd wondered about Chad and if you left him alone, figuring you probably HAD to at times being a mom, so I'm glad you responded. If your and Trish's family can work around this, I KNOW this family can since my friend has more function than your guys do. It seems there truly is a way, if the will is there.

                        Each and every one of you in this thread and the PM's sent to me will all be very helpful and I WILL put all your words of wisdom and advice to good use! Thank you all SO MUCH! REALLY THANKS!!

                        edited to add:

                        p.s. I meant to say to you thenose that your dog is beautiful!
                        Last edited by WM; 08-01-2006, 11:59 PM.
                        "I just want you to know, it was the best time ever." J.F.F.

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                        • #27
                          My sister is quad C5-6 since 1989 and has made MANY adjustments over the years. She has "lever" door handles on all doors and she is able to open them easily. SHe has some wrist movement but very weak. She has leather loops on just about everything from TV remotes to phones. She dials with her tongue ( strong tongue huh!) She recently had a suprapubic catheter placed and this has literally saved her from infections not to mention ease of care. There is of course a "leather loop" on her leg bag and she can now empty it. Everything remote possible has a remote for it. TV,Stereo,Ceiling Fan, and lights. She has been left alone for up to 8hrs at a time and has done well.
                          P.S. when she drops something, she has a grabber with what else attached? A leather loop!!!!! the grabber is actually a hook on a stick. She has some upper arm movement so that helps alot.

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                          • #28
                            For what you are describing my has similar limitations. He has the cath leg bag and the colostamy. My father uses a strap to get the door open (we have a pull one way push other way door) and has the foot to hold the door open is down when my mom leaves. He is home for 8 hours while my mother goes to work. He does have company through out the day. ( A benefit to know a bunch of self employed people).

                            His mom definitly needs time alone.. I know my mother finds going to work some day's as a break.

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                            • #29
                              When i was left alone at first for more than ten minutes i'd freak out,lol.
                              Now i too live alone with caregivers popping in for short visits morning and evening, I was the same couple hrs to get and open a can of pringles, but with time its now minutes, he has to BELLY UP TO THE BAR and start doing stuff PERIOD.

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                              • #30
                                I am T7-8 so I don't have any advice for any of the quad issues, but I do know that when I was first left alone, my husband actually had more issues than I did. So I can see how his mom is probably just as worried as he is! I think all the advice you got here is great, and I think starting slowly .... just bite the bullet and get his mom to leave for 20 minutes ..... even if she just parks around the corner and watches to be sure the firetrucks or an ambulance don't come! Someone could pick her up and (once everything was set to go ..... cathing, phone in hand, etc) make sure she leaves no matter what he says to her at the time, and then make sure SHE sticks it out for the whole time. Then build up the time. I think once they BOTH realize that a short time alone works, it will get easier.
                                T7-8 since Feb 2005

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