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Worried about my daughter

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  • Worried about my daughter

    My daughter sustained a cervical spinal cord injury in May of 2012 at 22 years old and was rendered a C7 complete quadriplegic. She does not live with me but I occasionally help her with bathing, cathing and her BP as well as other domestic duties.

    However she is not doing well neither emotionally nor physically. I believe her to be suffering from severe clinical depression but she refuses to be honest with a psychiatrist. She tells them "there's nothing wrong" and they buy it despite her being obviously incredibly depressed. She isolates herself often and has developed poor self care which resulted in UTI's and kidney stones as she wasn't managing her routine as she said she "doesn't give a f***". She has alluded to wanting to commit suicide several times before.

    She has never adjusted well to her SCI. I don't know what to do as it's very difficult to "step in" to her life at her age now.

  • #2
    It is difficult to cope without some peer support. Being involved with other SCIs who are further ahead in putting their lives together can provide a real boost. I do not know where you are located and whether there is a peer group for her to get involved with,. However she can and should get involved l with our Care Cure Community. She will come to realize that she is not alone...there are others who can truly relate to her situation. And we are here to help.
    You will find a guide to preserving shoulder function @
    http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

    See my personal webpage @
    http://cccforum55.freehostia.com/

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    • #3
      This is tough. You can search through this forum and find a lot of folks with the same feelings.
      What did she do before her injury? See if you can get her back to that or as close as possible.

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      • #4
        Both above with excellent advice.

        Seeing others her own age or younger will make her think about herself and might spark some motivation.
        Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

        T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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        • #5
          ^ She has no interest in going to SCI peer support groups and trust me we have tried. She has no interest in online groups either according to her.

          We are from Canada, Ontario to be more specific.

          I don't know where her life is going at this point as she had no interest in making any changes. She has lost all hope. I can not step in as no therapist or psychiatrist finds her to be suffering from mental illness (which isn't true) enough for us to step in take care of her fully as she is 25 years old.

          We are worried like you wouldn't believe. She binge drinks and eats terribly - I see her nothing but chips and other junk. She will not touch a single vegetable or fruit.

          Don't know what else to do.

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          • #6
            This to me sounds like a typical 22 year old however she may be expierencing this later in life because of her accident. Unfortunately there is not much you can do but be there when she falls. And she will fall sooner or later. Unless she attempts to comit sucide and you know she is attempting it and then call the ambulance there is not much they will do. You can try to do the shopping and meal prep for her or have her aides do this to cut back on the junk that is brought in the house. But if she drives again not much you can do. It is tough i know as i went thru the very same thing early on. And still go thru phases. Does she still go to a physitrist who manages her sci issues? If so maybe try making a discreet call to them a mention your worries.
            T6 Incomplete due to a Spinal cord infarction July 2009

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            • #7
              Thank you everyone for your supportive replies.

              Another thing I have noticed (and I know there isn't much use in bringing this up) is worsening atrophy in her hands. They've gotten so tiny and withered looking which is the direct result of her not doing ANY physical therapy to strengthen tone. The same goes for her legs. Her body is deteriorating from lack of maintenance beyond normal atrophy.

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              • #8
                What part? I'm in Windsor.

                Not much can be done about the atrophy.

                What about friends from before? Certainly all of them didn't leave her? What about a pet - someone she HAS to look after if she doesn't want to take care of herself?

                22 is hard. It's just coming up on 3yrs and she'll be 25. I'm sure she sees no future for herself. Did she go to school, want to work - anything? What was she doing before 22 with her life?

                I didn't mean support groups. There's always rugby but not everyone is into that. Skiing at Collingwood for quads too during the winter. Adaptive sailing in Toronto. Some accessible camping areas. Water skiing up by the Soo.

                What were her hobbies before?

                She has to have time to grieve mom; it's longer for some than others.

                Does she drive or want to at all?
                Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                • #9
                  Also - having someone cathe her and do her BP is probably ripping her self esteem to shreds.

                  Has she thought about a colostomy or superpubic catheter to manage herself?

                  Any more steps towards independence can only be a good thing.
                  Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                  T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                  Comment


                  • #10
                    We live within Wellington county.

                    She is a loner mostly. That has always been a staple of her personality.

                    She he has never really had significant "hobbies" and her interests are unknown as she never mentions any. I believe she just goes through the motions of life rather than participating or enjoying anything in particular which is why I strongly believe she has I diagnosed clinical depression. Perhaps some even before her SCI as her personality has always been slightly indicative of such.

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                    • #11
                      Well, she's in the heart of thing to do up there!

                      I tend to be a loner anymore either.

                      I have to be up in the Big Smoke on June 10th if she wants to meet for expensive snobby drinks (lattes, chai etc). Or I'll be back sometime in July and August as well. Pass along my email if you like lynnifer at hotmail dot com.

                      I was paralyzed at 12 due to sudden onset of Transverse Myelitis. Kind of a dysfunctional family so left the home farm at 18. It's been 30yrs this summer. I've been where your daughter is for sure, though I was lucky to be T11.

                      P.s. The sailing crew meet at the Harbourfront Park on Sunday's when warmer. Doesn't hurt to go for a drive and watch from the car. She may or may not be intrigued ... but there will be people less and more disabled than her out in Lake Ontario!
                      Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                      T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                      • #12
                        The Reeve Foundation has a peer mentor program. They also do peer mentoring for family members/caregivers. Even if sh dosent want a peer mentor you could have one...someone who is a caregiver in similar situation.

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                        • #13
                          Would prob be great for her to get a service dog.

                          How are her eating habits?

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                          • #14
                            It sounds like she is depressed. And her isolation is not good...

                            Is she seeing her doctors? How often? Does she have a SCI physiatrist? A primary care doctor? Does she like them? Are they decent doctors?

                            It upsets me very much that doctors are not better about treating depression aggressively - especially in the early years after injury. It is very common, and normal. Some people are severely affected by it, but others aren't. They are doing studies now showing that treating this depression is important for recovery as well as improving mood/quality of life. At our local rehab center (which is a SCI center) they are doing a clinical trial using the anti-depressant Lexapro in SCI patients soon after injury, with some evidence it may improve recovery..... Here's another clinical trial that was just published and shows a good outcome using Effexor in the famous medical journal JAMA.

                            http://www.ncbi.nlm.nih.gov/pubmed/25607727

                            Print this out and give it to your daughter's doctors.... and your daughter. Most doctors are sloppy and don't take the time to address it. Sometimes a medication can be a short term (or long term) solution.... especially for a person that has isolated themselves and doesn't have support/counseling/other options. The best combination is a medication AND counseling. But again, the vast majority don't get this.

                            Does she suffer from neuropathic pain? There are medicines that help this pain and are beneficial for mood. Effexor (in the trial above) and Cymbalta are two of them. Sometimes people will agree to start a medicine for something other than mood, even if they will refuse it to treat their mood alone.

                            And you need to choose your battles, and realize that you cannot (and should not... ) take over her life. Do not mention her changes in her body/atrophy... there are few things more damaging to a young woman's self-image than critiques of their appearance, and I'm sure she is very very very aware. You also are describing normal atrophy considering her injury. Do not berate her for not "preventing this". Do not mention her food choices, exercise, or even cathing at this point. These are less important and will not improve until her mood does. You will only make her feel worse by nagging. Believe me... I speak from experience.

                            Support her. Have her over for home cooked meals. Get her outside in the sun (good for mood). And have her meet Bethanny!! I do love the idea of a service dog....

                            I'm actually surprised others on this site haven't mentioned medications.

                            Sometimes a call to the doctor expressing your concerns is needed, especially if she has mentioned wanting to hurt herself. Sometimes it will be the UTIs/cathing issues or other self-care issues that will at least get you back into the doctor's office so the main problem can be addressed.... so you may need to let those go until she reaches a crisis. Meanwhile, just give her love and support like you have......

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                            • #15
                              does she have a manual wheelchair? At C7, she should be able to use a manual chair a couple days a week. she needs to get a routine going that gets her out into the public. Has she ever thought about joining gym or fitness center. Gym's have came a long way in the 30 yrs I have been in a chair. The gym i go to, there is a quad I have seen many times and several Para's. When I first joined a gym, and for a month or so, no one talked or paid attention, but eventually people wanted to help and talk to me. Now when I go to the Gym everyone wants to talk and I just want to workout. It's a routine now in my life I look forward to. before you would join visit as many as you can. you should also be able to find a trainer that will find appropriate exercises for your daughters arms and shoulders. If she is willing, it will become a routine she looks forward too, she will get fit, and she will meet people.

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