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Thread: In awe

  1. #11
    Hi Stacey~

    As you can tell from my name, I'm another SCI mom; my daughter was injured 3/31/99 (almost four years!). I can only repeat: welcome! Too bad you had to come looking for us, but we're glad you're here. You have a wealth of experience and compassion in the folks here, so take advantage of us. It does get easier; you are VERY early in the game. One day you'll wake up (after 8 luxurious hours of sound sleep ) and realize that things are not as hectic, chaotic and exhausting as they used to be...really!

    Moms and spouses have different emotional issues to deal with; might be interesting to discuss that someday....

    Vicky

  2. #12
    Senior Member KDK513's Avatar
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    We have a malte-poo who has perfected jumping up on the recliner without making my husband spasm. Our other dog is not as gifted, so he is not beloved by hubby. You are so right about dog therapy. On our wedding anniversary, 9 months post, I took our then 14 year old son with me to the local Animal Shelter and ,as fate would have it, there was a lonely sheltie mix puppy. This was a lovely gift to myself and son, but I had to stand firm cause my husband thought it was nuts to add the chaos of a puppy to our house. You know, that poor dog was very sick and we almost lost him within 24 hours, didn't even have a name yet, so the vet advised euthenasia. Two trips to Ohio State Veterinary Clinic and $1000 later he's still here, fat and happy, like the rest of us.

    Stacey,we finally hit the crises mode and decided to try my sleeping in another room. I desperately needed rest. We did lots of brainstorming with his OT cause sometimes the tried and true did not work for us. I used a baby monitor the first year and he promised not to call unless he was in dire need. I think eventually they figure some things out on their own. Anyway this solution is not for everyone, but it works for us. By the way, my husband is a para, so almost all his difficulties revolve around his trunk area. I have no experience with hand and arm limitations, but others here will help you.

    In my observation many caregivers already had experience in the medical field, so many I have met, are nurses. I have envied their experience and background many times. My Retail and Real Estate experience was for naught, though I can draw a pretty decent floor plan. Being a determined problem solver helps alot. Back to work, for now.

  3. #13
    Senior Member krajaxa's Avatar
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    Ok, first of all welcome here... This is a god-sent website for all the SCI people. There is lots of information and people are always willing to help each other.

    My hubby is a para, so also he has full arm-hand and abdominal function. But the first few months he got home from hospital, were INSANE. Although there was only the two of us and our dog, we have lived out my paycheck for about 7 months. Did your hubby applied for SSD and also SSI? The rehab person told us we might not be able to get either one of them, little she knew we got both... until hubby won his workman's comp. It doesn't hurt to try and even a little bit of help is a great help in tough times.

    As for the sleep, I used to sleep w/him on hospital bed for about three months in our living room (only the first floor of our house was accessible for him) and turning him over every three to four hours... Then he somehow learned to sleep the whole night long on his back and he moves only top part of his body a little bit around. And since he wears condom caths 24/7 it's really impossible for him to sleep any different way since they come off almost every time. We have pretty good luck w/them during the day and night (of course, as long as he sleeps on his back - BTW, we invested the little bit of money we had into a softside water bed, haven't had any skin problems).
    And I can give you our solution for the attendant: Since hubby signed up (oh, sorry, I did for him) for Medicaid card (my insurance wasn't paying for too much either and we didn't have resources to deal w/it all) he qualified for few hours per week. It helps a great deal! Check with your Community Resources for Independence Center in your area.
    The weight loss must be common, hubby lost about 30 lbs while in rehab. He blamed it on the hospital food. He has put all of it back on and some extra (it's going to be 2 yrs for him in april)! But it also took a while to get used to eating and finding his apetite.
    Yes, it is like having a child at home for a while, but it has definetely gotten easier for us by now. Hell, we are even planning on having a baby finally...
    Hope I could help some, should you have any questions, this is a great place to be or you can email me (you can find my email address in my profile).

    Good luck to you!



    krajaxa

  4. #14
    Senior Member martha's Avatar
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    Stacey, welcome. IT DOES GET BETTER!!!!!
    There is no way in the world I would have gotten through this ordeal without the advice and support of the wonderful people on CareCure. The moral support here on CareGivers as well as the medical support from Dr. Young and the SCI Nurses. And, the practical advice from those who had gone through this before we did.

    Reading your posts here was like reading a summary of my life a year or so ago. My husband was injured 23 months ago, T-3. I think the shock lasted at least 6 months. But the shock didn't offset the panic of "how will we do this?". Then came absolute bone-racking exhaustion. Sleeping on a cot or in a chair for 2 months while he was in the hospital because if I left overnight he would have a crisis of some sort. Then coming home and realizing that the exhaustion hadn't even started yet! Your descriptions of getting up all night every night could have been describing us! Then the guilt at not being able to handle everything perfectly. Then more guilt over getting angry and resentful about having to handle everything and not wanting to. And even coming here, more guilt because my husband is "only" a para and not a quad or high quad like so many so I felt we should feel blessed for what he does have but I didn't feel blessed at all. All of this combined with depression over the situation and life changes. Feeling really sorry for my husband as his friends all disappeared because they couldn't "handle seeing him like that". Dealing with bowel problems and bladder problems and midnight trips to the ER with AD and horrendous expenses that aren't covered by insurance and on and on and on. But........

    At some point in the very recent past, I realized that I smile sometimes now! And I'm not totally depressed all of the time. And now some nights I only have to get up once! Like KDK, to preserve my own health and sanity I had to start sleeping in another room. It was also the only way that he was ever going to start waking himself to cath and take meds instead of depending on me to do it. He still calls me in the night usually a couple of times, but it isn't like being awakened 5 or 6 times a night.

    And while our life is nothing like it used to be, it has developed into a pattern that is better than I thought it ever would be again.

    Sorry to ramble -- all I really meant to say was welcome and please feel free to ask any questions or vent anytime you need to.

  5. #15
    Senior Member KDK513's Avatar
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    Martha, eat your heart out girl! the only time I get called is if he hears I am still up and about. He fears for his life!

    Krajaxa, no way! 2 in a hospital bed, all night, waking up refreshed? I am impressed! We catnapped or cuddled in that tiny bed,but the best was when I would collapse in his bed, alone, while he was off working out, (during his brief stay in rehab) being tortured by his new best friends. He'd come back wiped out and I'd prolong my stretch from my little rest, well deserved, I thought!

  6. #16
    Senior Member KDK513's Avatar
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    SCIMOM, bet you miss that beautiful girl! Any progress reports?

  7. #17
    Stacey - A group of the caregivers here have done the impossible and arranged for a weekend away, just for us, to share, and just chill - we'd love for you to be a part of it, if you can. Don't immediately say no; there are always ways things can be worked out!

    Please email me at

    marmalady@worldnet.att.net

    so I can give you the 'particulars'.

    Also, anyone else who's a caregiver and interested in our 'Caregivers Gone Bad'! weekend, please email me for more info!

    _____________
    Tough times don't last - tough people do.

  8. #18
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    Martha, I was do glad to hear that someone else's husband had "crisis" when you left them. I think that was the worst part. The closest rehab was an hour away in Chicago. When I would leave at night to go home to the kids, he would panic. Got to the point they would have to sedate him before I left. There were several times they had to call me in the middle of the night because he would have a panic attack. After only four weeks in rehab they pretty much kicked him out. I think he was so homesick, he just quit trying at therapy.
    So I brought him home. He still has these episodes of seperation anxiety when he goes to rehab in the morning, the funny thing is is that he loves it there. I thought they would go away in time, but they haven't. I really don't know what to do about them. For a while (before I caught on) He would complain of a stomach ache and I would call off work. Now I just send him packin' with his TUMS. It's like sending my oldest daughter off to kindergarten again. That child would have to be pryed off my leg every morning for the entire year!
    To answer your question, We have applied for SSD. We couldn't get SSI because I make too much money (tell that to the gas company!). His benefits don't start until April. There's a five month waiting period here. Right now I am making COBRA payments for his insurance. The rehab that he is attending doesn't accept medicaid. His rehab benefits will run out in April or May, so I'm going to have to call rehab and work out some kind of payment plan so he can keep going. Hopefully they will work with me, if not I may have to bring up the time they left him unseatbelted with the armrests up and walked away. He then proceded to fall out of his chair and landed on his forehead. Fifteen stitches....
    I thought that after being an oncology nurse for 20 years, I knew all there was to know about insurance, but good Lord, I didn't have a clue! I bet by now the have caller ID and fight over who has to get to talk to me....
    Anyhow, I had better get off. I could talk all day, but I have to go to work now. Thanks again for all the encouragement. Sometimes you just need people to tell you it's going to be all right. IT's hard to accept that when you have this black cloud hanging over your head.
    Have a good day..... Stacey

  9. #19
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    Hi Stacey, Time does help....It is so new and so tough dealing with it all....My son rehabbed at RIC in Chicago. Is that where your husband was at? Do you live in Ill.? There are ways to get help here, sometimes just need to find the loopholes! I am a Nurse also, and my son was injured at 25, C6/7. I was his main caregiver and only one for a while till I about cracked!! I lost my son last April to a rapid Pneumcoccal pneumonia, he became septic...
    My email is mazey@sainet.net
    Your feelings are entirely normal, and you will find wonderful support here. Linda, from Central Illinois

  10. #20
    Senior Member krajaxa's Avatar
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    You bet 2 on hospital bed (for about three months)!!! I think after several days I was just too exhausted to wake up every 3-4 hrs, I would never hear the alarm.
    And I can relate to those separation issues... They would call me from rehab at work asking if I was going to be in that afternoon (1hr 20 mins away) because he was having a fit! The first three days he made sure he was in the room by himself and I shared the empty bed in the room (supposedly they made an exeption, they are not allowed to do that), then we would get the "apartment" in the complex about every other weekend. He wanted to get out of there in about two weeks. I think the one weekend at the "apartment" made him realize he cannot do that until he gets a little bit better. They changed some of his meds and the terrible anxiety went slowly away.
    Doing laundry and helping to clean up after accidents don't bother me anymore, I feel like a robot doing that... and I have some kind of schedule set up when I do what...
    ...oh, and we still get those moments when we just embrace and cry...
    So just hang in there!!!

    krajaxa


    P.S.: I smile a lot more these days...

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