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Thread: What to do!!!!????

  1. #11
    I now have to add-I didn't mean let her lay there forever! LOLOL I'd have no problems letting a grown woman stay thirsty for 30 minutes, though, if she is rudely demanding water!

  2. #12
    Betheny - thanks so much for your comments. I do feel like sometimes we are being mean and not understanding. That's why I asked and that is why this site is a godsend not only for the injured, but for us family members to try and understand. She is my brothers girlfriend and she is 31 - rode and trained horses for for a living and their their horse broke her neck. She has OT and PT, but she doesn't go because of whatever reason she has as I mentioned above pain, constipation, the van driver, the cold air, rain. She used to go on the computer now she doesn't even do that she asks us to do it.

    She doesn't want more drugs - believe me we would give them to her, but her therapist has convinced her she'll be a drug addict and it is best to wean herself off. Then when she does try a new a drug if it doesn't work within 2 days she goes off it and says it doesn't work give me something else. She has had every anti-depressant under the sun and that doesn't work either. Unfortunately once she sets her mind she doesn't budge. Once I gave her extra strength tylenol (blue and red) capsules for her hand pain - I know it worked because I was able to take away the icepack and she comfortably watched TV, but as soon as I said how are your hands she said she was in pain. We will never be right. I guess the "princess" syndrome.

    It's difficult for us to take her out because we can't get her in and out of the car and then when we struggle she gets frustrated with us and gets angry. My brother just picks her up. He takes her to horseshows, but that makes her sad so he has to bring her home.

    We do try to set her straight about the servant thing but unfortunately it upsets her she cries and then we feel horrible. I offered for her to come on her, but she won't go on the computer. I talk about CC all the time and how it helps her to understand her injury, but it just goes in one ear and out the other. Again unfortunately this was her before her injury so it's hard to change someone's attitude. She really is nasty to my brother sometimes and then he argues back that if you had of listened to me that day you wouldn't be hurt and then it just continues on. I know he's tired and he gets no break - when he's sick she constantly wakes him to rub her hands and he does it. He sleeps on the couch because she doesn't want to sleep in the bedroom on their new select comfort bed that she now decided is not what she wants. A couple of thousands of dollars later.

    Believe me she doesn't care about pooping on herself because she knows that we are great about cleaning her up and thank God that hasn't happened to her because we are very religious about her bowel program and I've read enough on CC to make sure we get the rest of the suppository out. We are just at our wits end and are wondering will tough love work, but then that means we desert my brother and I can't do that because he gets no sleep. We just stopped turning her every 2 hours and just move to every 4 hours and then if the pillows are not place in the right positions (back, legs and butt) we here it for days. I don't know he does it. My brother won't use the Hoya lift because he doesn't want her to feel disabled he just picks her up right out of bed - which after awhile I'm sure will take a toll on his back. But in the same respect she won't let us use it and then she calls my brother from his work to come do it. Thanks for letting me vent. Even her own parents keep their distance because they know how "demanding" she is.

  3. #13
    Sorry to be blunt, but your brother is hindering not helping. Picking her up will hurt him. Then what will she do?

    As a c6 myself she can do alot more than she is, especially with all that equipment. Do you have a SCI place near by. Does she need a mentor?

    If not....I'd love a new bed! ::wink, wink::
    Get involved in politics as if your life depended on it, because it does. -- Justin Dart

    I shall not tolerate ignorance or hate speech on this site.

  4. #14
    That's such a shame. She's cutting her own throat.

    I've noticed, as people age, they become more of whatever they originally were. Grouchies become horrible bitches. I'm a laid back slob that doesn't pay bills on time. The slightly anal become compulsive control freaks. I have a theory that SCI slaps us with that part of the aging process in a matter of 6 months or so.

    She was a prima donna before. Now she sounds like Diva from Hell!

    It is impossible to change her. If it were me, we'd be testing the tough love out already LOL. She's not gonna die from a bit of a wait! I mean, cath her on time, obvs. What can she do for herself? What function does she have?

    I understand her fears about the drugs. They are valid. But it sounds like her therapist has no experience w/ ppl w/ chronic pain. If the choices are A) miserable life, moaning in bed or B) drug addict (and those are not the choices btw) but I'd choose drug addict that gets up and lives.

    I've had a different illness in addition to my SCI for the past 2 years. I've decided I'll do what I can to keep my family from visiting me in my bedroom. My poor dog has to live in there with me, because he is my caretaker. I don't want that kind of life for Dingo, either!

    Your brother will eventually leave her, for his own survival, is my prediction if she doesn't straighten up. The best person in the world can't sacrifice his life to someone determined to be unhappy. Do they have kids?
    Last edited by betheny; 10-25-2007 at 11:52 AM.

  5. #15
    Betheny got it right.

    BTW, if you refuse to look up things for her online, she'll get peeved, but she'll also either get over herself or she'll go without the 'Net.

    Glad you're here.

    Hope she joins us soon.

  6. #16
    Quote Originally Posted by mr_coffee
    SOunds like she's depressed.

    ... SHe's only 10 months post, she's still adjusting to the suck.
    Sometimes the wisdom in one so young takes my breath away. Adjusting to the suck indeed.

  7. #17
    Quote Originally Posted by betheny
    That's such a shame. She's cutting her own throat.
    She was a prima donna before. Now she sounds like Diva from Hell!
    If it were me, we'd be testing the tough love out already LOL. She's not gonna die from a bit of a wait! I mean, cath her on time, obvs. What can she do for herself? What function does she have?
    We definitely make sure that we cath her ontime and we even try to give her her meds on time, but then she tells us I don't feel like taking them now and then when her pain sets in I try to explain that since it is time released you are having break through pain (I work for a pharmeceutical company so I know) and then just says no it doesn't work. Also I am crazy about her being cathed on time and then when she leaks she gets mad, but if I bug her about being cathed she gets mad. We try to feed her first and then everyone else eats, but then she doesn't want to eat and decides she wants to eat when I get ready to leave. We don't have a table that her electric chair can fit under so that she can feed herself so we just feed her. Or she'll ask to eat when my brother is falling asleep kneeling by her bed.

    We have not helped which is definitely for sure, but if we stop doing it she will run my brother into the ground and he feels really guilty. He has even stopped believing in GOD and our family is big on that so we know that he is coming to the end of his rope.

    She does nothing for herself. She has use of upper arms and her forearms were really strong before the blood clot. She also was able to fit things between her thumb and first finger, but now since she has us stretch her fingers out so much her fingers/fist are becoming useless. We dress her. She won't even let the home health aid dress her it has to be my brother. I even suggested something that I found on the forum about tying a string to the bed so that she could turn herself - no doesn't want to do that. She can pull me over - that's how strong she is.

    Support groups don't work for her because she feels she doesn't need to be in them. She has 5 family members (in-laws (us) not her immediate family) who are with her literally around the clock and I told her alot of folks on the forum at her level of injury don't even have that - so she gets angry at me for saying it, but you get frustrated and don't know what else to say. I don't want to waste everyone's time and keep rambling. I think as you said which is what we started doing is letting her sit there and wait for things instead of jumping as soon as she asked.

    She has me make all her calls (medicine refills, drs. appts, banking needs, etc) and does nothing - well I can't dial so how do you expect me to do it. I can't write things down. So I do it.

    It's probably time for a family meeting to address the situation. I'll keep everyone posted.

  8. #18
    Quote Originally Posted by betheny
    I Do they have kids?
    Thank GOD no.

  9. #19
    Sorry about your situation, so many people forget that SCI affects their family members too.

    I'm w/ Bethany on the pain-it's so difficult to explain how a paralized person is in pain, but it is no party!

    However @ 10 months post, the party has to end. Yes, a family meeting must be held.Explain to her that you are willing to help as long as she does her share.

    If she can't fit under the table,raise the table. Feeding herself is a must. Being feed @ her level is RIDICULOUS!

    Get the easy open lids on her meds-she can handle her own meds.

    She is also capable of making small easy meals, getting drinks etc.

    If she won't go to OT, have them come to her. They can helpp her develop skills and techniques to become more independent on the things above, dressing, transfers etc.

    As far as cathing, she needs to find a SCI urologist and consider an augmentation to become independent in that aspect. Being cathed by someone else forever is not practical!

    Honestly, she should be able to be left @ home alone and survive w/ some help in the am and pm.

    I know you guys are doing your best. This injury didn't come w/ instructions.It won't happen overnight and it will take a lot of patience and time-tough love too! She has to grow up and it has to start somewhere. You guys need to get a game plan in order.I wouldn't wait much longer or else ya'll won't have any patience left!

    Hang in there!

  10. #20
    LOL @ Thank GOD no kids. Where was the blood clot? It wasn't on her spinal cord, forcing her to lose more function, I hope?

    Assuming it wasn't...I think you can feed yourself at C6. At least I did, before I got some finger function back. I had special utensils. It seems to me if somebody gets hungry they'll figure out the eating thing. Depression can kill an appetite. Unforch, it sounds like she's using eating as a power tool over your bro. (OMG, if I were you I'd hate her for what she is doing to him!)

    Plenty of C6's live alone with minimal help. Getting even a twitch of fingers back at C6 is a huge deal. She's a fool if she's not maximizing that. I don't know if she realizes how much a thumb can improve her life.

    I have one hand (the claw) that I rarely stretch because it's more useful clawed up. They put botox in it once, it sucked, I never let them do it again. I dropped coffee for 3 months, it was useless that way. Try a heating pad (a microwaveable one, preferably) on her hands. The ice hurts to think about. I used a hot paraffin dip for mine a lot. Dishwater helps. (She won't like that!) The OT people often have ideas. Anything that helps arthritic hands will make hers feel better imo. The best finger advice I have is...make her fold the towels. Fresh from the dryer, they are warm and feel good. This is the best OT I know of, and you can do it at home with constipation LOL.

    She can dial a phone, or else program a voice control phone for her. Same with remote controls, I used my teeth. The hard part is making notes re the results of the phone calls. She can either do voice messages to herself or email herself for this.

    Is there a way to put blocks under the table, or would it make it too high for the rest of you? Could she possibly have a separate small table, so she can eat at the same time as the rest of you? Only babies get meals on demand in my world.

    I have a good friend and coworker, C4 injury. She works, has a family and co-founded Unite 2 Fight Paralysis. Plans rallies every year. Types only with a stick in her mouth. Her husband is great but she would never dream of running him ragged. She has an aide that helps, yes. But my point is she lives a full productive life with half the function your princess has.

    I think the family meeting is a good idea. Try to convey that because you care, you will no longer be her servant. Independence is the greatest gift we have. If you wait on her for things she can do herself, you are stealing that gift from her. We all know people that would love to have her potential. Don't let her waste it.

    I hope you'll keep us posted. Good luck! And make your brother read this!

    Look into bladder augmentation/mitrofanoff surgery. This lets even high injuries cath independently, through a stoma. It can even be concealed in the navel. It's been a great quality of life improvement for many women.

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