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

  1. #21
    Agree with everything so far except her pain issue. I believe her pain to be real except she may be acting out to the extreme just for attention. It goes in-line with everything else this Diva is doing. She needs to try Neurontin. I've been taking it since rehab and it really helps my pain. Granted, my pain is no where near what it sounds like hers is, but it still helps a lot.

    Tough love, as Betheny said, should have been implemented a while ago. The more you guys baby her, the worse it's going to get. You have already witnessed this 1st hand. If she refuses to attend rehab, roll her into the workout room and make her do something.. does she need help with all the equipment? Hook up the FES, slide her onto the standing frame, hell, invest in some ear plugs. Get her setup on the comp. and in front of it and eventually she'll take interest. Keep the radio and tv off so she'll find her entertainment on the 'net.

    Your brothers days are numbered... unless there is a drastic change!! No one needs or wants to be treated the way she is treating everyone. ALL you guys need to see a therapist to cope with her attitude and I think everyone venting and getting their concerns out in the open will help. At the minimum, you know a family meeting is in order.

    Since she can't fit under the table, get a plexiglass tray made that will velcro to her chair. I have 2, one for home and the other in my van in case I can't fit at a friends or outside at a bbq. Very inexpensive and worth their weight in gold. Also, I use my tray to put my laptop on everyday. If you have wireless, she can sit outside when it's nice and surf CC... if you get to that point. Does she have a cuff that will hold her eating utensils? A cuff will also hold a pencil in it so that she can dial the phone easily. She should be able to use a knuckle. Does she have a headset for the phone? Very inexpensive and when she needs to make a call, set the items in front of her and have her do it. She's way past needing to learn.

    Is there a rehab center where there are other SCI's at her level that have been post injury longer or that have coped better? My PT will call me if someone she's treating is having a rough time. I'll visit and have a talk and inform them of things they can and will still do. If they work hard that they'll return to driving soon, but it takes motivation on their part. Does she have any aspirations of driving again? This 1 thing has opened my life of SCI to a whole other level. Just the fact of being able to go whenever is HUGE mentally. Of course all the above takes a ton of motivation on her part... and yours too. Good luck.

    ETA: As far as notetaking, if she has herself a laptop or can get to the comp., I use my notepad on the comp. for notetaking. She can quit with the excuses as now she can do tons more if you guys bear down.
    Last edited by 2jazzyjeff; 10-25-2007 at 01:11 PM.





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  2. #22
    Banned adi chicago's Avatar
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    don`t judge others if you don`t have severe neuropain and spasticity guys.
    regarding the comment ...feeling pain is a blessing for her level of injury .....agrrrrrr....only an ab can say such of stupid word.my pain level is 9-10 daily ....i know what pain means.all the best to free pain and spasms sci and ab.people.
    • Dum spiro, spero.
      • Translation: "As long as I breathe, I hope."

  3. #23
    I hear ya adi. We are not all the same. Two people can have the same injury,but be so diffrent. SCI affects everyone around us. What ever we affectwe infect. but take it one day at a time.

    Good Luck and hope things gets better.

  4. #24
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    Yes, pain is controlling and consuming. But to let it do the same to others is unfair.

  5. #25
    Banned adi chicago's Avatar
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    Quote Originally Posted by jerryblt06
    I hear ya adi. We are not all the same. Two people can have the same injury,but be so diffrent. SCI affects everyone around us. What ever we affectwe infect. but take it one day at a time.

    Good Luck and hope things gets better.
    very well said jerry....i feel sorry for the lady.sometimes i argue as well regarding my pain issues with my sister and my nephew....i just teached them after 5 years of pain and torture to understand and to respect me .excrutiating pain sucks....those burning electrical sensations combined with severe spasticity ....agrrrrrr...hell on earth .
    • Dum spiro, spero.
      • Translation: "As long as I breathe, I hope."

  6. #26
    Quote Originally Posted by adi chicago
    don`t judge others if you don`t have severe neuropain and spasticity guys.
    regarding the comment ...feeling pain is a blessing for her level of injury .....agrrrrrr....only an ab can say such of stupid word.my pain level is 9-10 daily ....i know what pain means.all the best to free pain and spasms sci and ab.people.
    adi-chicago - forgive me for my stupid, insensitive comment. That is why I like talking with everyone here - you correct me and I know to watch my mouth. I guess I'm just repeating what her doctors say to her since they feel should shouldn't be feeling anything since she is considered a complete.

  7. #27
    Quote Originally Posted by quad79
    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.
    Hang in there!
    Thanks quad79 - we did raise the kitchen table so she could fit, but most of the times the things we eat she can't eat with her utensils and we don't have sit down meals so we are always either eating in the car and when we are in the house it just is easer to feed her (our fault).

    Rehab even taught her how to write her name and she doesn't want to practice that - although now she may not be able to because her hands are not in a fist anymore.

    I set her meds out for the week in those pill containers so that my brother can give them to her. I wouldn't trust her with too much medicine since she is depressed some times. I tried to teach her how to hold a bottle so that she could drink herself. Doesn't help.

    Unfortunately all the times she tried to transfer the PT folks almost dropped her on the floor so she is scared to death to try and do that. She has a great urologist and we have all discussed other methods, but they seem to think the IC is the best - because she gets so many UTIs, but not the most practical for others involved. I've literally stopped at a rest stop to cath her in the car because I knew we wouldn't make it home - it made her sad, but again she won't opt for anything else and that we feel is her decision.

    Since she has to be cathed every 4 hours she can't be left alone and Medicaid only pays for 3 hours of help in the morning and they don't cathe - they are not trained to.

    We'll hang in there. I so appreciate everyone's comments and help. God Bless!

  8. #28
    Quote Originally Posted by betheny
    LOL @ 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.
    betheny - I really wish she could meet you. I believe she would connect with you really quickly.

    The blood clot was in her thigh and she has had 2 within the last 2 months. Fortunately for her when the accident first happened they installed an umbrella to catch them which we knew nothing about and when she got the first clot about a month ago they went in to install one and found it. Then like a few weeks later her thigh was swollen again and they said she had another one.

    She had alot of drive when she first came out of rehab, but now that she sees very little progress I think that depresses her and also we have all started trying to move on with our lives and not be around as much and I think that makes her give up to because we were all huddled around her when she first came home so every little thing she did we cheered her on to try more so now the cheering section is gone. So she doesn't try to move things any more.

    We have raised the table, but we don't eat normal meals so it's just easier to feed her in the living while she is in bed. She has moved her hospital bed to the living room and usually gets into bed around 6:00pm most nights. She also has been doing the hyperbaric oxygen chamber thing to and has and some sensation in her lower back and abdomen since she has been doing that.

    And yes it kills me to see my brother no longer happy - if I go into the kitchen to have a conversation with him and I miss the fun we use to have - she will call from the living room until one of us comes to sit with her. She always been jealous of our relationship. He eats alone in the living room and my mother stopped coming because she can't watch how he's being treated and how exhausted he is. Now when I come he hands me the remote goes to the bedroom and sleeps until I leave at 1:00am. I do her bowel on those nights - but most of the time he's doing it. One day he was trying to dance with her while she was in her wheelchair to make her feel good and she just didn't want to be bothered. He told her he would never leave her and he tries to take her everywhere he goes just like it was when they had the business together, but sometimes she is so mean to him I cry on the way home because he really does love her and can't understand how GOD let this happen to her. Which saddens my mother because he was raised in the church. If he is sleeping and sick she won't let him sleep. The other night I had just finished her bowel and repositioned her with all the pillows and my brother was exhausted she kept wanting him to come rearrange the pillows because I did it incorrectly and I kept asking well which pillow is wrong and she said she couldn't tell, but just knew they were wrong and I said well guide me and she was like no and then started screaming for my brother to come reposition her and he did and then fell asleep on the couch. I have taken care of her since April along with other caretakers in the family and you mean to tell me after all this time I don't know how to reposition pillows. I could vent for days, but if I get her to come on here I'm going to ask her to look you up. God Bless you betheny.

  9. #29
    Banned adi chicago's Avatar
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    Quote Originally Posted by Lindasue
    adi-chicago - forgive me for my stupid, insensitive comment. That is why I like talking with everyone here - you correct me and I know to watch my mouth. I guess I'm just repeating what her doctors say to her since they feel should shouldn't be feeling anything since she is considered a complete.
    my humble advice lindasue ...try to understand her and find the best meds and docs which can help her to decrease her pain ....is hard for caregivers as well ...i know....sci is one of the worst injury in the world.if she has a computer ask her to join us...keeping the mind busy might help her a lot.
    all the best and good luck.
    ps.i am complete as well [c6-c7] and the pain and spasms kills me.
    the damn pain can change humans behaviours....i also experienced conflicts with the people i love [my family]after my injury 5 years and a half post.i learned a trick ....i tell them ....forgive my attitude please and i will call you only when i need help .i watch tv,music,search the net ,meditation techniques ...is not easy ...i just try to do my best i can to mantain a plesurable atmosphere even if i feel to scream every second [pain ,spasms]....i learned to eat ,drink and turn in bed alone...no help needed.only transfers ,and caths,bowel program..i need full assitance.agrrr...life is cruel sometimes.
    Last edited by adi chicago; 10-25-2007 at 03:05 PM.
    • Dum spiro, spero.
      • Translation: "As long as I breathe, I hope."

  10. #30
    Lousy freaking doctors, telling her she has no pain because she's paralyzed. That's such a myth. Makes me mad. I hope she decides to join us!

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