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C1/C2 injury--correct diagnosis?

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  • #16
    Trying to get her some independence

    I wrote about my mom a few months ago, who is 83. She fell two years ago and fractured her C1 and C2 vertebrae. She also has a compression of her C7 disc, which has caused her hands and fingers to clench up and she can't uncurl them.

    Thus she has very limited use of her hands and fingers. She can't hold a book or turn the pages, nor can she dial a phone. She is able to, on a very limited basis, hold a fork and use it to eat, and also pick up a glass and drink--but imagine doing so while wearing very thick mittens--that's what it's like for her. She has been getting PT and massage therapy on her upper body, arms, and hands but we haven't seen any breakthroughs. Recently she had to go into rehab for a few days and began crying because, "I can't even comb my hair!"

    She also has congestive heart failure, which means she spends a lot of time on her back in bed, resting or sleeping. She does get up for three meals a day, and is able to walk, with assistance from my dad, around the house. They go out in the car once or twice a day for rides of up to an hour each.

    The bottom line here is that she can't do anything by herself. She is basically helpless. She needs assistance in everything except sleeping.

    I can't imagine how awful this must be for her. Every now and then she will roll over and sit on the edge of the bed. Of course, she can't move from there or she'll fall down.

    I've been trying to come up with something she can do by herself, for herself. It seems to me that if she even a little independence, it would mean a great deal to her. Just something she could do by herself. The only thing she does now by herself is press a button that activates a bell that alerts my dad to come and take her to the bathroom.

    Does anyone have any ideas? Thanks.

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    • #17
      Dear Jaysne,
      I am so sorry to hear about your mother's disability. The best person to assess what she can and can't do for herself is an occupational therapist. There are some adaptive devices that people can use for activities of daily living without having the best fine motor movements. It is important fro your mother to have some quality of life. I hope the OT or a recreational therapist can assess your mother for activities that will bring her some joy. What about books on tape, or an IPad with a stylis that she could use with an adaptive brace? She may need some training and some support to make this happen.

      I hope she is comfortable and her pain is well controlled. This is a disability that will take some getting used to and with her being 83 years old her previous coping skills will affect her current coping skills. You as her daughter may need some help in coping with your mother's condition/disability. Once the assessment is complete it is important to accept what you mother can and can't do and be supportive.

      I wish you the best and to seek support for your mother's disability and for you and your father as her caregivers.

      pbr
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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      • #18
        Dear friends,

        My mom--who I wrote about in this thread--passed away last week, on Oct. 8. Despite all of her afflictions: congenital heart failure and spinal nerve damage, she never complained and always was easy to give me a smile and a light in her beautiful blue eyes. She suffered these maladies for about three years.

        Thank you for everyone's ideas here. I saw her two weeks ago and gave her a mechanical arm with which to hold an iPad so that she could read while lying bed. She never got to use it. I miss her very much and will always treasure the fact that she was my mom and that I was able to know her for so long. She stood for so much good in the world that people seem to have forgotten about. Thanks again to you all.

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        • #19
          Jaysne, my sincerest sympathies. I'm sure she appreciated your efforts more than you know. Take care.

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          • #20
            Jaysne, I'm so sorry for your loss.

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            • #21
              Know that you were a great daughter to her. I'm sorry for your loss.

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              • #22
                Scaper1, Katja, and Regina, thanks for your kind words. (Regina--I'm a son )

                BTW, I notice this forum comes from Rutgers. Mom graduated from Douglass College.

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