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Thread: New and scared:

  1. #1
    Junior Member
    Join Date
    Jul 2002

    New and scared:

    My husband was injured on 6-6-02. He is an incomplete C5-7.
    We have been married for 11 years but have spent the last year
    separated but were discussing getting back together when he was
    released from prison. We have 2 young children, 20 months and
    4 years. The 4 year old is also autistic. We were lucky enough
    for my husband to go to a really good medical hospital and then
    a really good rehibilitation hospital. They have given me a spinal
    cord injury book and taught me alot of things that I will need to
    know to take care of him. He has no feeling or sensation from his
    nipples down and only minimal use of his hands. They want to
    release him 8-6-02 but I'm not sure the apartment will be finished
    by then (new ones being built) I have to stay in the area where
    our 4 year old is already getting help. But after reading the
    book, all the pamphlets and reading some of the messages on these
    sites. I'm almost to scared to bring him home. It is like everything
    will make him sick, AD, or hurt him in some form. He's having a lot
    of pressure pain inside of his legs, he's cold (freezing) all the
    time, and he wants to sleep all the time. Is all of this normal?

    We were both drug addicts, I have 2yrs-4months clean and He has
    just over 6 months clean. At first he was really upset about
    having to take any kind of drug again and it seems he is starting
    to ask for them more often now. I'm not really sure how I feel
    about it. I don't want the addict he was to come back but I
    also know if he's in pain he needs help.

    I have found take when I'm helping him transfer he doesn't help
    as much as when his therapists are helping him. And at times
    he doesnt help them either. He is expects the nurses and aids
    to remember when he needs cathed. Are these all things that
    some people go through? I guess I feel they might want to be
    more independent, if not by doing it them selves at least by
    what, when and how.

    Like I said I new to all of this so maybe in time we'll get it
    together, finally.LOL God Bless

  2. #2
    Hi, Cara, Welcome to CareCure; I'm glad you found the site, although sorry for the circumstances that brought you here.

    I'm not clear from your post if you will be bringing him to your house on discharge, or his own apartment - which one is being modified? Wherever, if the remodelling isn't done by the anticipated discharge date, you can ask the case manager for an extension of his stay at rehab, to allow more time to get the house together,and also give him more time in rehab.

    It's scary for everyone to think of bringing our family member home; we've all been there, believe me! Learning about all the complications with SCI is almost overwhelming at times; he may experience none of them, or even develop complications you haven't even heard of yet. The best thing to do is just to take one thing at a time; don't get into the 'what if' syndrome.

    Are you and/or he in a Narcotics Anonymous program? If you are, please maintain good contact with your sponsors. You have a lot to deal with, with both your children and your husband, and I hope you'll find the support you need both in the program and on the boards here. Please stay with us, and feel free to vent when you need to, and also to ask questions as they come up. The 'Care' forum is moderated by some very wonderful SCI nurses, and they can help with any medical situations you have questions about.

    If your husband is a member of NA, has his sponsor visited him? I'd highly recommend for him to stay in touch, also. Is he seeing a psychologist at rehab? The issue of 'denial' for someone with SCI is as big as for someone to recognize their addictions. Things like relying on someone else for the cathing and sleeping a lot are all signs of not wanting to deal with his injury, and the loss it presents for him. They're all normal processes, and if he gets the help and support he needs, hopefully he'll be able to work through a lot of them. If he's going to be living with you, he needs to step up and realize what your responsibilities are, and take as much of his care that he is able to.

    Being cold all the time is one of the 'wonderful' side effects of SCI; the body's temperature regulation goes out of whack, so a person can feel either cold or hot, with no seeming rhyme or reason; I call my son 'lizard man', as he responds to the heat by his body temp going up and cold by his temperature falling - sometimes to as low as 95 degrees! Most people finds that the temperature sensitivity regulates a little as time goes on, although the inability to regulate does continue.

    As a caregiver, along with being a mom of 2, with a special needs child, is going to place a lot of stress on you, as I'm sure you've already found out. Try to have a safety net for yourself, so that you can get some respite time for you - even if it's just to take a nap! Do you have family nearby who can help out to give you a break? Neighbors to do things like shopping, or even help with cleaning?

    How is your insurance? Has the case manager talked with you about getting a home health aide, at least part time, to help your husband?

    You both need to be honest with your feelings and communicate with each other; you have a lot going on; your continuing recovery, your children, and his SCI, as well as trying to rebuild your marriage, all need to be dealt with honestly and openly, and you both are going to need each others' support in dealing with what life has thrown at you.

    Again, please know that we're here for you; also, it would be great to see hubbie up on the boards; he'll find a lot of support for himself here, as well. And you'll both find hope here, as well; hope that one day a cure will be found.

    Please stay in touch, and let us know how you're both doing.

    Tough times don't last - tough people do.

  3. #3
    Member ptamom's Avatar
    Join Date
    May 2002
    Sault Ste. Marie, Ontario
    Welcome Cara.

  4. #4
    Senior Member martha's Avatar
    Join Date
    Jul 2001
    Texas hallelujah!
    Cara, I'm glad you found this site. It has literally been a life-saver to me since my husband's accident 16 months ago. Pay especially close attention to Marmalady's advice. You will find that she is one of the most knowledgeable, sensible and most of all caring people you will ever meet.

    Before my husband was released, they sent us home for a weekend test run. I was absolutely terrified to be alone with him in that situation. A million fears go through your head. Amazingly, the weekend was totally uneventful but I was thrilled to take him back on Sunday anyway and avoid some of the stress. When he was released, it took several months to fall into a routine that started to feel "normal". Not normal in any sense that you've ever known, but a new normal.

    I won't lie and tell you there won't be problems, because there will be. But taken one at a time and one day at a time, they are managable. And this site is a wealth of information and support. The caring is unbelievable. Someone sat up with me virtually all night during one of husband's first AD episodes posting encouragement and suggestions. I probably would have gone nuts without her support and knowing someone was there.

    Bottom line, we will be here for you. You can post anything and someone will be around to help. It's not a weakness to reach out for help (something I had to learn) and you've come to a good place to get it.

    Good luck!


  5. #5
    Yes, welcome Cara.

    Martha said it right.

    Onward and Upward!

  6. #6
    Senior Member kate's Avatar
    Join Date
    Jan 2002
    bellevue, wa, usa

    Take advantage of us.

    Cara, your post says loud and clear that you're the kind of person who can survive this. I'm also married to a guy with a c/6 injury, and we also have a couple of kids. Here's what I remember from his homecoming, now about 13 months ago:

    He slept 14 hours a day and then nodded off over his lunch, and took a nap.

    It took about an hour and a half to help him get from the chair, out of his clothes, through his meds, through the bathroom routine, and to bed, (and he was able to do his own bathroom stuff, once I helped him in there and got him set up).

    All night his legs would spasm, sometimes at 1-minute intervals, and the only way to get them to stop was to try to rearrange them in a better position. Eventually this was managed with a combination of baclofen and valium, which he still takes (only at bedtime) and which works well. I also had issues with the medications . . . my spouse is a 26-year veteran of a 12-step program and I really can't imagine how either of us could have managed without the long practice of how to live a day at a time. Use your meetings, and if you aren't going to any, start right now, before he comes home. You're going to need some sane people nearby.

    I still had a house to manage, and a couple of very nervous kids--much older than yours, which was good in some ways and hard in others. They were very much aware of what we all had lost, and in bigtime grief about it--and I knew too well that I wasn't being much of a mother to them. So in addition to watching the struggle their dad was enduring, they temporarily lost my support, just when they needed it most.

    So, when does it start to feel, um, like you might have a life left out there? I think for us it was about 2 months after he got home. Which means, for you, that maybe by Halloween you'll be looking back and knowing that the darkest part is really gone. You can make it until then, believe me!

    It's troubling that you sense he's making you do more than he makes the pt's during transfers . . . if I thought my husband was taking advantage of my willingness to help him, I'd last about half a day before resentment got the best of me. He has to do his part, whatever it is, as hard as he can--and you should never, ever let your pity for him drive you to do more than what's really necessary.

    Good luck--keep in mind there's no question too weird or embarrassing for these forums. We're with you.


  7. #7
    Junior Member
    Join Date
    Jul 2002

    Thank You All

    I thank you all for the support and encouragement.

    Now to answer some of the questions:
    The whole family will be moving into a different apartment. And I did speak to the case worker today and she said they would keep him until the apartment is ready.
    I have been in a 12 step program since I was very young. And am currently in NA. I haven't been to a lot of meeting lately though. There is a lot of other things like being with my kids, being with him, getting all the paperwork for medicaid, disability, and the legal stuff, and packing up my aprtment and his house. But I know I need to make the time for my meetings. I also know that my mother needs time with my father too. She is the only one that helps me by taking care of my children when I don't take them with to the rehab. My husband his been incarserated since he got clean - take is where he got clean -so he doesn't have a sponsor. That is where the accideent happened.
    He does have a phychologist at rehab but he is one of those people that don't talk or trust anyone so he doesn't tell them how he's feeling he just agrees with what ever they say.
    We don't have any Insurance. He lost his job last year when he got busted. But I think Medicaid is going to pick him up for now. Sorry folks theres another one the tax payer has to pay for.

    The therapist and I keep trying to explain that he has to do things for himself as much as possible to keep what he does have strong, and hope for more return but learn to live life this way first. Is this wrong?

    Thank You all again!!

  8. #8
    Senior Member kate's Avatar
    Join Date
    Jan 2002
    bellevue, wa, usa

    Doing things for himself

    Cara, if he can do anything (like put on his own clothes, or take them off, or cath, or sit up, or roll over), no matter how awkward, clumsy, slow, and difficult it is, then he should do it. He's still a man! You'll have plenty to keep you busy without taking on stuff that needs to be his. His injury is very new, and there's plenty of time for things to change--which is not to say they will, just that the way he is tonight isn't necessarily forever. I remember saying to myself over and over, either this will go away, or it will become routine. That's exactly how it is to live it out on a daily basis.

    Our experience with hospital psychologists wasn't great either, and I don't think the world's most willing patient finds it easy to talk with these people. Does he have a good friend anywhere who might be willing to show up and listen?

    Praying for you both--


  9. #9
    hi, Cara,

    Don't apologize for Medicaid at all!!!! My son was on Medicaid from the time of his accident, and I have to say, with a few exceptions, they've been overall great. I saw folks with private insurance have to leave rehab way before he did, because their insurance wouldn't cover a longer stay.

    Glad to hear about your relationship with NA. Could you get someone from your local group to come in and talk with your husband? It's too bad the psychologist isn't someone he can open up to, or who can 'pull' it out of him! Like every profession, there are good and there are those who should be digging ditches somewhere!

    You and the therapists are absolutely right in encouraging him the way you're doing. Yes, he probably will get some more return; he's still in the 'acute' phase of his injury, and people have reported return of sensory/function/motor sometimes over two years post. But dealing with the here and now is what he needs to focus on; 'One day at a time' is such a good slogan - for everyone!

    He was injured in prison? Have you talked with a lawyer? Do he still have time left to serve?

    With all that you're dealing with, try to take some time for yourself; even if it's a bubble bath or an hour's walk! It's so easy for us as caregivers to wear ourselves out, both physically and emotionally, and because we're not focused on ourselves, but on our family members, we don't even see the signs til we crash and burn. It's great that your parents are helping out with the kids - I know you feel badly about it, but I'm sure they'll tell you if it's getting to be too much for them.

    Stay in touch - we're all thinking of you!

    Tough times don't last - tough people do.

  10. #10

    Hi Cara,

    I just wanted to say, as a sci survivor that, forcing him to open up, will make him tune people out even more. I for one, will end up doing the psycoanalisys before letting anyone do it to me. I had a psychologist while I was in a rehab center and, I did the same thing, amuse her to death, tune her out and ignore her. One of the reasons was that I don't like people telling me how to act, feel, etc. or how to resignate. On the other hand... a close friend/family member who can talk about their own life too and respect eachothers point of view, can make me talk a little. All though, I don't think anyone really knows how I feel.

    I might be wrong and, If so, Marmalady please delete my post but, as much as he DOES need help, forcing it into him will do more harm than good, specially if he's already playing along with everyone.
    Just my 2 cents.

    Good luck and keep posting.

    ...It's the heart afraid of breaking,that never learns to dance... It's the dream afraid of waking that never takes the chance... It's the one who won't be taken, who cannot seem to give, and the soul afraid of dyin'... That never learns to live...

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