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Thread: caregiver can or can not

  1. #1
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    caregiver can or can not

    is there anyone who is a caregiver who has days that they can't doing anything right. My granddaoughter is 3 yrs old and c1 c2 quad. . we have no day nurse and one night nurses for five nights a week. I do the rest of the care. My husband just got a clean bill of heath from cancer. My daughter (23 yrs) has a head injury from the wreck a year ago. There are days that between all three of them i can do nothing right, and nothing gets done. between taking care of Faoth and then handle two grown up who thing that since i have not been sick, i don't know what they are going through. Is it just me not understanding? Or do i just need to vent.

  2. #2
    Senior Member Mona~on~wheels's Avatar
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    Sorry Stewart, vent away! Sounds like you deserve an ear to listen.
    I'm here for you!

  3. #3
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    Stewart, It sounds like too much to handle for anyone. Mona is right, vent here, because you probably need to badly. I can't imagine trying to juggle all that you are, and just want to say that if there is a day that doesn't go as you had hoped, well, you can only do so much. Take care of yourself too.

  4. #4
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    thanks , i have been read some other posting, a it sounds like there are a lot of peope that think that that there will never be a day when they will get out of the wheel chair. Faithis only three and we work hard with her. She now can move her shoulders a little and started to move her stomach. we were told that this would never happen. So there are days i need to vent like today. Had a bad head ache yeasterday, and the house in a mess we have family coming over for the 4TH ONLY ABOUT 30 PEOPLE and I only have a whole house to clean, no night murse tonight. and I didn't ask them to come, my husband did. Love him but boy after 28 years you would think I would know every trick he could pull. thanks for reading

  5. #5
    Stewart, please vent away!!! If your uncomfortable doing so on the boards feel free to PM me.

    I had to laugh when I read only 30 people for July 4th. Only??? Seems like a lot to me and then add all of the caregiving you have been doing. Yikes!!! So how did the 4th party go? I hope your still standing.

    It sounds like you have too much on your plate. You need a break too. Is there someone in the family who can help? Or a close friend?

    When my husband came home from the hospital it was miserable. I had to take care of him, our two young girls, and keep the house functioning. It was brutal but I had tons of help. I would have never made it through those first few months if it wasn't for wonderful family, friends, and neighbors. I hated to ask for help but what's the alternative?

    Find strength in the boards and the others here. You'll find your not alone. We are everywhere!

    Kelly

  6. #6
    Senior Member Mona~on~wheels's Avatar
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    30 people for the 4th! and take care of Faith!
    I hope your husband helped you Stewart.
    So good to hear Faith is making improvements!
    Only God knows what she can do. Post often.

  7. #7
    Stewart, glad to hear from you again. I'm sorry that it's going rough right now, feel free to vent.

    Those of us on the care receiving end greatly appreciate it, but don't always realize how much you go through.
    C2/3 quad since February 20, 1985.

  8. #8
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    it been a busy july, the four went pretty good. no one really talked to me, but faith had a ball. that is all that counted. my daughter is still in Fl. and my husband, god help him, is clueless at times. Don't know how he did it while we were in Philly. I have to keep tell my seft that I do not need time, that there will be time later. The good thing is school will start back on Aug. 11th. I will at least be able to clean the house then, and hopefully get all the grass cut. Husband does what he can, but is helping his mom out too. ONe day it is reall yhard, then other days not so bad. Today Faith was able to move her shoulder more. So what if i have to wait a few year, along as she keeps get a little better each day or week. We are now trying to get informtion on the Xcell center in german. thanks for let me vent here. there is no other place to vent at all, if i say one thing the wrong way at home i am in the dog house for a few hours, or at least till Faith needs to pee. At least she love me very much at this time. But the best part of any day is when she wants me to hold her, it is when she has had a long day, and wants some where safe to go to sleep. She has climb into my lap since she could crawl. I miss this the most, so i wiil hold her all night if she needs it. does anyone every get use to miss out on what could have been after a SCI. if so how long does it take, it has been 12 months 18 days and i still can see old dreams of dance classes, hourse back riding, and swimming with Faith. I can still see her walking in white one day, or just running after her puppy who is now a dog. will this ever go away. or is is ok to keep hoping and dreaming of the day she will get off the vent, and move , or even push herself in her own wheelchair with out the sip and puff. ( which she does not like at all) any answer would be great thanks.

  9. #9
    Senior Member Robynbird569's Avatar
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    Stewart, just read your last post. I feel for you for my daughter was 3 also when she was injured. I truley feel for you. You stated you dream of horseback riding and swimming with Faith. She still can do them. My daughter is in horse therapy and absolutely loves it, it does great wonders for her balance and strength. Swimming therapy does tremendous help with upper body strength. Plus the mind set that both activities gives a sense of freedom. I have seen and also been told that with children their little bodies are still growing, things are likely to improve. As I have witnessed with my daughter she went from a C5-C7 to a T11-L1. It takes a lot of patience and hard work. Seek for all thats out there. I have found that there is more than what they tell you. But get her involved in everything that you find that she would enjoy and what will benefit her. It will pay off in the long run.


    Stay safe my son. See you around thanksgiving!

  10. #10
    Senior Member Mona~on~wheels's Avatar
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    Quote Originally Posted by stewart1398
    it been a busy july, the four went pretty good. no one really talked to me, but faith had a ball. that is all that counted. my daughter is still in Fl. and my husband, god help him, is clueless at times. Don't know how he did it while we were in Philly. I have to keep tell my seft that I do not need time, that there will be time later. The good thing is school will start back on Aug. 11th. I will at least be able to clean the house then, and hopefully get all the grass cut. Husband does what he can, but is helping his mom out too. ONe day it is reall yhard, then other days not so bad. Today Faith was able to move her shoulder more. So what if i have to wait a few year, along as she keeps get a little better each day or week. We are now trying to get informtion on the Xcell center in german. thanks for let me vent here. there is no other place to vent at all, if i say one thing the wrong way at home i am in the dog house for a few hours, or at least till Faith needs to pee. At least she love me very much at this time. But the best part of any day is when she wants me to hold her, it is when she has had a long day, and wants some where safe to go to sleep. She has climb into my lap since she could crawl. I miss this the most, so i wiil hold her all night if she needs it. does anyone every get use to miss out on what could have been after a SCI. if so how long does it take, it has been 12 months 18 days and i still can see old dreams of dance classes, hourse back riding, and swimming with Faith. I can still see her walking in white one day, or just running after her puppy who is now a dog. will this ever go away. or is is ok to keep hoping and dreaming of the day she will get off the vent, and move , or even push herself in her own wheelchair with out the sip and puff. ( which she does not like at all) any answer would be great thanks.
    Stewart come & vent as much as you want. I'm a quad and lots of things are hard. I'm also a mother & a grandmother and I know it would be harder to watch my grandbaby like you're doing, than to live disabled myself. I feel your pain.
    Then to have family members gripe at you. That's just not right.
    Stewart you & Faith are in my daily prayers. May God answer your dreams and give Faith a wonderful life at whatever sci level she's at. I know your arms are the most comforting part of Faith's life. Thank God for grandmother's.
    Hold in there & keep on venting.

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