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Thread: someone to talk to who understands....

  1. #1

    someone to talk to who understands....

    I need someone to talk to who understands. My husband has a C-5 C-6 SCI. It happened last June when he fell 30 ft. from a windmill. I am 24 and I take care of him by myself. We have a 2 year old which I swear is the only reason I smile anymore...especially on the hard days.
    Six years ago I too had a SCI. They told me I would never walk again. I told them to watch me, and 45 days later I made 3 steps out of the hospital. I was a C-6, C-7. Unless you know it happened you cant tell. I have a limp and my left hand has the strength of a 90 year old woman. I got my bowel and bladder back....finally....that took the longest to recover from.
    My husband hasn't been so lucky. He has arm movement but nothing below the wrists or waist. I'm about to lose it on his bad days. He blames me for not working hard enough with him or knowing what to do. I don't cook what he wants etc. His bad days are about 60% of the time.
    I will say that I love PROJECT WALK!!! We just don't have the funds to stay there or move there.
    I'm lost most of the time....I know I need help, I don't know what to do. Any advice suggestions or anyone else who just wants to be my friend and who understands????
    THANKS!!!
    Jenny Recovered C-5 C-6

  2. #2
    We recommend whenever possible that spouses not take on the role of sole caregiver. Do you have any access to resources for some part time attendant care? You need a break, and providing all of his care plus that of a 2 year-old is way too much.

    He also needs to learn how to be less demanding and do the care that he can for himself, and to direct a PCA (personal care attendant).

    Can you two get counseling on this? It may be critical in order to save your marriage. If he wont' go, then you need to go by yourself.

    I am sure others will provide you with advice from their experiences. Welcome to our forums, and please see this as a safe place to vent and get support.

    (KLD)

  3. #3
    Thank you so much for a response. We live in VERY rural TX. Before him I was probably the last SCI. Its hard to find good help and very hard for him to accept it. I don't have time to do anything but care for him and the baby suffers the most. He doesn't like me to leave b/c he might get AD and need to be cathed. HE feels that if we get outside help or when I am so tired that I just don't love him. All anyone knows to do is wait for another couple of good days. HE does a routine of like 3-4 bad days then 3-4 good days....back and forth constantly. Im just wishing it was all over with. I'm sure many feel my pain. Thanks for the vent time. I would love counseling we were promised it in rehab and well rehab SUCKED!!! Dont go to University hospital in San Antonio. We got one day of counseling. and we don't have a true counselor like what we need here.
    Jen

  4. #4
    Does he have tenodesis in either hand? If so, he can learn to cath himself. You would have to train your own PCA regardless of where you are. Sometimes it is actually easier to find part-time PCAs in a rural area rather than urban as there are fewer job opportunities. I know that we have members here from TX who can help you with more information about PCA funding & resources in your state.

    Seek out counseling in your area. It does not need to be from someone specializing in SCI psychology. A good clinical social worker, general psychologist, marriage and family counselor, or even your pastor may be options.

    Peer counseling may also be very helpful. If you have the ability to get to San Antonio, or even just contact them by phone, I would recommend talking to someone at the ILC there for help in finding resources for all of the above:

    Council on Independent Living
    4905 Center Park Blvd.
    San Antonio, TX 78218
    Ph: 210-599-7711

    (by the way, he is not a military veteran is he??)

    (KLD)

  5. #5
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    I am so sorry that you have to deal with this at such a young age and being a mom on top of it - wow, life really does suck sometimes! This is a good place to find comfort and advice. Vent all you want, you are in good company! Hang in there, it gets a little easier as time goes on. We are here for you and I will keep you in my prayers.

  6. #6
    Hi, Jen, and welcome to CareCure. You will find that the people here do understand and will all help you as much as they are able, in their own personal and different ways. There's a huge amount of knowledge and experience for you to draw on, and many many potential friends.
    As you know, venting helps, sometimes a lot, but still there's no substitute for in-the-flesh counseling; I hope you can find someone nearby for that.
    Your husband is probably angry and terribly frustrated that he now can't do the things he used to. It's very easy for him to take some of that out on you. And he probably feels bad about that, too.
    It sounds like maybe he's scared to be alone. Can you cath him then be away for a short time?
    He needs to learn that you are important too; that if you are to continue taking care of him you must have assistance. Loving takes energy - you need to save some energy for that, and I don't mean just the physical part, but that's very important, too.
    Best wishes,
    - Richard

  7. #7
    Senior Member justadildo's Avatar
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    99ss00....p.m. Me And I'll Help You With The Resources You Need Here In Tx....we Can't Fix His State Of Mind But We Can Ease Your's

  8. #8

    Days like this

    In 2005 my father was paralyzed on his motorcycle, I quit my job and gave up my life to save his. We went round and round all the time. He would get mad and throw things ect. I learned early that he was of course in pain but that he more so needed to learn that his injury effecting myself just as much if not more than it effected him. His life as far as activity did not change too much. Of course he is not out riding his bike everyday or cutting the grass, ect... but he still works, goes to therapy, hangs with friends. I lived with him full time for one year and just moved out last october. It was the best thing for both of us. He had to realize that I didn't HAVE to do anything, I was there b/c I wanted to be and I knew I was the one person he could deal with (pride aside). My point, somehow your husband needs to realize that you DO understand and are doing your very best to make things work. He should get on Flomax or something for his bladder and wear a Texas Catheter to help you be able to leave the house for periods of time without the worry of intermittent cathing. Therapy sessions as much as possible with a local hospital or home health. Alos he needs to realize the harsh reality that most SCI victims who are married before the accident are divorced after. If he doesn't have you and appreciate and love you his life will resort to a nursing home. Not as a threat but as a reality. I met and now live with my boyfriend who is amazingly a c5 quad from last June in a car accident. I am used to everything and we get along famously so I am blessed but I have his parents to help while I work at night. He is 24 and I am 25. I also have a six year old. DO you have any family near? If not you may want to consider moving in the future to have closer assistance from either family or home health aids. Medicare has a waiver program for low income families that will cover someone coming out to the home for periods of time to help with dressing, bathing, ect... Hope I helped some.

  9. #9
    Thank you all for the help advice thoughts and prayers. We don't have any PTs in this town just a PTA who didn't work out. She said we were too unrealistic. Sometimes I think he gets mad at me b/c I had such a wonderful recovery time and he hasn't. We had home health for about a week, but they had never dealt with an SCI. Our town is about 5000 ppl and we are 80 miles from a big town. San Antonio is about 130 miles from here, Austin about 120. I feel like I am walking on glass I don't want to upset him. This just all seems so unfair. We work his body moving his legs, arms, hands, fingers, chest, everything probably about 5+ hours every day. It seems like that is all that we do, is work his body. His legs are SO tight and spastic which I believe to be a good thing, b.c the muscles are staying strong. I just wish that even one hand could work or a cpl of fingers could work. He also had collies fractures of both wrists so I think that played some effect on how they are now. Every time he moves his fingers just hyper extend and his whole body twists. I totally believe in a recovery, ya'll may think I'm crazy but I know he will walk again.
    I will be trying to look into some kind of help though until then.
    Also our families live here also. His dad help us with the bills, they had a father/son business, and his mom and sisters help me with the work out. My parents also help with housework and the baby, but as far as taking care of him everyone just lests me do it all. They are afraid they will hurt him or something, which I told them you can't hurt him.
    Oh and his dad who he has always been close to and lived with until we were married and worked every day with etc......yeah he pays our bills but we live like a mile from him and we see him maybe once a month, the last time we saw his step mom who we used to be close to was at Christmas.
    They pretty much abandoned him. Sometimes I wish I could just call and pretend that everything was okay. I'll get a small break Tuesday b/c I get to go to the doctor 80 miles away!!! Its sad when you look forward to going to the doctor.
    Jen

  10. #10
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    Jen, could it be possible that your husband's dad is having a really hard time dealing with the injury? I know from experience that many of the dads of SCI sons have a very tough time. Our son was hurt 2 1/2 yrs. ago and my husband still has issues. He is trying, but the heartbreak never goes away. I also believe that the wives and moms are much more hopeful and stronger emotionally.

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