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  • I don't know how to help anymore!

    Hi everyone,

    I'm using my wife's account to try and find some advice, I'm not sure what to do anymore. My wife Sam became a T11 para a little over six months ago while snowboarding with friends. After the initial shock she was hopeful and confident in herself. She always made jokes and tried hard at PT and set high goals for herself. She is funny, smart, outgoing, adventurous, and has never been one to sit back and watch life pass her by!

    She was discharged from rehab in late May and seemed to be happy to be home, but that was short lived. She had made so many plans for us this summer and was excited to try things that she loved before like kayaking and camping. Now I can't even get her to leave the house most days. I have tried everything I can think of to give her motivation. I know she is upset and hurt but her lifestyle is becoming destructive. She has been skipping PT sessions, not watching for pressure sores, and eating unhealthy. She refuses to hang out with friends even though they are over all the time, and chooses to hide in our room.

    A couple of nights ago I woke up to her sobbing around 4 in the morning. I tried to console her but she just kept saying that I'm going to leave her and I can have my ring back if I want it. I have no idea where she is getting this idea, she is truly the love of my life. It is breaking my heart to see her so upset.

    I know she is depressed, that much is easy to tell, but I don't know how to break it. I don't want to push her to hard, but she can't keep living like this, it will send her straight back to the hospital. She is only 22, has a low injury, and is only one semester away from graduating with a dual major in business. I know things in her life have changed, but how do I make her see how much she still has going for her?!

    Any Advice is much appreciated in advance.

    Thanks,
    Ayden (Sam's Husband)

  • #2
    This is just guess work, I'm trying to imagine myself in Sam's situation...

    Sounds like everything's getting to her and it's a bit too much at the moment. Perhaps it's worth taking some time away from all the PT, just the two of you somewhere where you can just enjoy each other's company. Try to make her realize how far she's come and what an amazing person she is. I think if you can make her see how much she means to you, and how her accident has changed nothing.. I think then maybe she might start to cheer up a bit.

    Don't push this on her, but it might be worth focusing on wheelchair skills to help build her independence. That is what I focused on during my rehab and now when I go out I feel confident that I can go pretty much anywhere. (ie backwheel balance, small curbs, steps...) Feeling more 'at-one' with the wheelchair will help her immensely. Has she got a decent lightweight chair at the moment? Rolling around in a crap chair is horrible! I didn't want to be seen in mine, and as soon as I had a good chair I became so much more outgoing and happy.

    I hope this helps in some way,
    Simon
    T11 Asia A after near-fatal bike crash.. Just happy to still be here

    No, I didn't loose my mind... It got scared and ran away!!

    Comment


    • #3
      One of the best things is to get her around others in her situation who have attitudes that are positive and looking forward to future.

      Maybe download or watch on Sundance The Push Girls and Teal Sherer's My Gimpy Life..to see how other young woman are dealing...maybe she can relate to some of them?

      She needs to get back to school too.
      "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” ~Carlos Castaneda

      Comment


      • #4
        So she has been home for about two months? She is in secondary shock (the reality of life at home). I agree that focusing on your relationship is primary. As long as she is willing to do her stretching and exercises at home for a few weeks, I would let that be, but not for too long.

        She is feeling very insecure in your relationship and this has nothing to do with you. I disagree with the concept that nothing has changed. Everything has changed but that does not change the way you feel about her. The life she had planned for herself and for the two of you will not happen as she planned. That is a fact. That does not mean that the life you have going forward will not be even more rewarding than the one she had planned. She need to know that you are on this ride with her. She needs to hear it regularly. Hopefully, it will not be too long before she believes it. She sees herself right now as a liability to your life. She is planning on you leaving her because of her injury.

        It sounds as if you have friends over regularly and she hides in your room. Maybe tell your friends that she needs to take it slower. Maybe coordinate your friends so that you two have time alone and she can interact with one or two friends at a time instead of a room full.

        You may also want to consider medical intervention for her depression. By that I do not necessarily mean drugs, though they can be a huge help. Therapy can go a long way. I do not know where you are but any opportunity she has to interact with similarly situated individuals, in a positive manner, will help her. You and I cannot relate to her feeling because it did not happen to us.

        Plan an outing for just the two of you that you know will be successful (dinner not Walmart). Most importantly, try very hard to treat her like you did before her injury. Go out of your way to make her feel more like your wife and less like a patient. Get her best girlfriend to take her for a girly thing (a manicure, a facial, something indulgent).

        Do not push her to go back to school right now. When she has adjusted better, open the discussion by asking what her plans are about completing her degree. While she can probably finish with online courses, she needs the socialization more than the degree.--eak
        Elizabeth A. Kephart, PHR
        mom/caregiver to Ryan-age 21
        Incomplete C-2 with TBI since 3/09

        Comment


        • #5
          Hi Ayden,

          I am T11-12 para. I also became injured at 22 (8.5 years ago now). I was also a semester away from getting my degree when I had my injury. Unfortunately, my injury was in January and I was still covered under my parents insurance so I ended up needing to take a full load of online courses while I was still in rehab. One of the hardest things I have ever had to do!!

          I remember when I came home, I was completely overwhelmed and was afraid to do anything outside of the house. I tried to make people believe that I was fine and go about my day while on the inside, I was screaming and just wanted out of this body that I wished was no longer mine. I was extremely depressed up until about 4 or 5 years post. I had no direction in life, etc...

          I think that focusing on your relationship right now is extremely important. If Sam knows that she truly has someone in her corner no matter what happens, someone who won't judge her, etc.. Then slowly she should get her confidence back. I also would suggest some counseling for both her/you/and possibly together. I wish that I had done this. Maybe if I had, it wouldn't have taken me so long to feel ok with me again.

          Feel free to PM me if you would like.

          Becky
          T8-9 according to latest scoring.......
          since 1/3/04

          I am the best at being me. No matter how that happens to be!!

          Comment


          • #6
            Hi everyone,

            Thank you for the responses, lots of good insight and advice.

            Eak - I have tried to do the therapy route for both of us but she refuses. She just keeps saying that if I havr so many problems that I feel therapy is needed I should just save my money and leave. I guess I dont know how to prove its because Ilove her.

            As for friends around all the time, we live with four of our closest friends. We rent the spare rooms out for a little extra money and to cut utilities down. She told me she didnt expect anyone to leave. Im not sure how to fix that because they all have leases till nextmay.

            As far as an outing to leavethe house and show her I love her, I have no idea how to get her to come. I havr set up a few outings to cheer her up, spoil her, and show her I love her.

            At this point Im thinking of getting a cabin on the lake, set the mood, and try to get her to go. If she say no, i cant really force her unless I throw her over my shoulder and carry her.

            Comment


            • #7
              Make an appointment with a good counselor (psychologist or clinical social worker) who has experience with both disability and depression. Make the appointment for both of you.

              Tell her you need help dealing with her disability and her reaction to it. Tell her that you need her to attend counseling sessions with you in order to help you. Insist that she go.

              Is she seeing her physician at all? You need to go with her and talk with the provider about her depression and withdrawal. It is at the point where she needs treatment. 2-3 months post discharge from rehab is a very low point for many people...it has finally hit home for her, and she needs help or she will continue to spiral downward. Please keep in contact with the community, and try to get her back on-line here too. It can help.

              (KLD)
              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.

              Comment


              • #8
                Ayden, don't know you, don't know your wife. But I am empathetic to the story you posted.

                Couple thoughts. One, you both have had a recent major change in your life circumstances. It is normal and expected that it will take time to adjust.

                Two, your wife has lost a lot of the control she formerly took for granted. Her fear of losing you is rational, even if don't see it as such. Pushing you away is a way for her to confront her fear, be proactive and gain some feeling of control.

                What to do about the above? Hang in, tighten your seat belt and expect that there will be some bumps and scary parts until you both figure out how to ride this bucking bronco. There will be ups and downs. Be patient and try not to read too much into day to day changes in your moods and attitudes. Reaffirm your commitment, and demonstrate it with your actions. Don't be afraid to fight, but agree to fight fair. Keep your focus on the long haul.

                Getting professional help and seeing how others have gone on with their lives are both good ideas. Life is life. We don't always get to pick our problems. We can pick the way we cope. Good luck to you both.
                Foolish

                "We have met the enemy and he is us."-POGO.

                "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

                "Dream big, you might never wake up!"- Snoop Dogg

                Comment


                • #9
                  SCI-Nurse - She went to a few of her follow up appointments after she was released, but sees no reason to go now. She has stopped going to PT all together with the reasoning that there is no point to it. I can usually get her to do stretches with me, but it takes a lot of convincing on my part. She says she never has energy and everything drains her. I make appointments and she agrees to go, but the day of she always has an excuse to cancel. I don't know how to make her go, I am more than willing to go with her and see what options we have.

                  I don't expect to just wake up and be okay with everything, God knows that there is no way I would be able to do that with such a major change in my life. But I don't want to see her give up. I have all the time in the world to help her adjust, I just feel like she has no will anymore. I've done everything I can think of from making everything in the house accessible for her, offering to have hand controls installed in her car, and just being there for her.

                  I'm going to make another appointment with a psychologist for both of us to go to. I will try telling her that I need the help with adjusting to everything, I just don't want her to feel at fault. I was reading another post that she had on here about her feeling guilty for everything. I don't want her to feel that way, and I'm thinking that she is putting the blame on herself for everything. My roommate said she had made a comment one day about not wanting to go to PT because then I have to leave work early to take her, and she is sick of me having to make sacrifices for her.

                  I guess I just need to think of a way to show her that I don't have to, that I want to. Shes my one, my other half, she just needs to believe that herself. I'm hoping a psychologist can help her see that.

                  Comment


                  • #10
                    I think that it just takes time. Its a big transition to except that this is who I am now. It takes a least a year, for it all to start to sink in. So try to have a whole lot of patience with her, and try to take it one day at a time. After a while, it may be helpful to find some upper body exercise to take ones mind off of the (everyday). Wheelchair sports or paddling or hand cycling. But for now it sounds like, doing stuff just reminds her of what she has lost, so she just stops doing stuff, to quit being reminded all the time, of her new reality. Can you really blame her? It just takes a lot of time to adjust. Hang in there, its a big adjustment for you as well, just ask my wife about that.
                    T12L1 Incomplete Still here This is the place to be 58 years old

                    Comment


                    • #11
                      I am also a recent injury. I was injured in December 2011 and am around the same level. I remember being very afraid after I left inpatient rehab. It is at that poin that you must begin to live again. At rehab you are surrounded by so many people in the same situation and many that are far worse off. Everything is accessible and you feel more "normal" in that setting.

                      Coming home can be stressful. While SCI is not uncommon, there really are not that many of us and you begin to feel the way you are perceived. People want to pity us and it can be easy for us to start to pity ourselves.

                      I really don't have any advice that has not been offered already. She sounds like a strong person and getting her active will help tons. But that has to be done at her pace. She is still in shock and it will take time to get over that.

                      Look into the High Fives Foundation. They are an organization established to help winter athletes who have suffered traumatic injuries. They are a great resource of others in the same boat who are determined to get back into the sports they love and are willing to help and support us in any way.

                      Finding others in the same situation that are battling to keep their wits and continue to be active despite our limitations has helped me so much. I don't know the extent of her injuries, but no matter what they are, there is life after SCI. Check out the exercise and recovery forum on CC. You will find much inspiration there. Good luck and God bless. Feel free to PM me if you ever need to chat.

                      Comment


                      • #12
                        Originally posted by Sam.I.Am View Post
                        Hi everyone,

                        I'm using my wife's account to try and find some advice, I'm not sure what to do anymore. My wife Sam became a T11 para a little over six months ago while snowboarding with friends. After the initial shock she was hopeful and confident in herself. She always made jokes and tried hard at PT and set high goals for herself. She is funny, smart, outgoing, adventurous, and has never been one to sit back and watch life pass her by!

                        She was discharged from rehab in late May and seemed to be happy to be home, but that was short lived. She had made so many plans for us this summer and was excited to try things that she loved before like kayaking and camping. Now I can't even get her to leave the house most days. I have tried everything I can think of to give her motivation. I know she is upset and hurt but her lifestyle is becoming destructive. She has been skipping PT sessions, not watching for pressure sores, and eating unhealthy. She refuses to hang out with friends even though they are over all the time, and chooses to hide in our room.

                        A couple of nights ago I woke up to her sobbing around 4 in the morning. I tried to console her but she just kept saying that I'm going to leave her and I can have my ring back if I want it. I have no idea where she is getting this idea, she is truly the love of my life. It is breaking my heart to see her so upset.

                        I know she is depressed, that much is easy to tell, but I don't know how to break it. I don't want to push her to hard, but she can't keep living like this, it will send her straight back to the hospital. She is only 22, has a low injury, and is only one semester away from graduating with a dual major in business. I know things in her life have changed, but how do I make her see how much she still has going for her?!

                        Any Advice is much appreciated in advance.

                        Thanks,
                        Ayden (Sam's Husband)
                        Time, patience, unconditional love, support however she wants/needs it, and encouragement to focus on the positives (or professional help to help her see that if necessary) is what you need to continue doing. It will take time.

                        EVERYTHING in her life is now different to her... she likely even views herself as a drastically different person especially in how she relates to you, her friends & family, work, recreation & life in general. She thinking about everything from "I can't fuck Ayden like this anymore" to "I'll have to deal with bowel routines forever" to "how will I be a good wife/mother" to "how can I enjoy x, y, & z in life now"... even if she can still do most things, just a bit differently, they're still DIFFERENT to her and not the way they once were and wishes they could still be. Its a complete relearning of life and a daily exercise in accepting reality... she spent 22 years crafting this vision in her heart & mind of how her life was going to play out... and then in a split second all that was shattered and she's left to try to rebuilt it all from scratch. It's going to take her some time... at least a year or so imho because everything she now does in life is now "different" in some way. Even something simple like kissing you isn't the same to her because she's sitting.

                        But she's lucky to have a person ike you accepting her unconditionally... she knows that... even if she can't say it & is buried wallowing in self pity like we all did/do. Take each day at a time... help keep her focused on things to look forward to... continue to build her up as a person by showing her u love her & that regardless of the SCI she still does it for u & she's your one and only. Accept that they'll be rough times for her... help her through it however u can... talk to her & encourage her to talk openly to u about her fears and don't shrug off those fears when she tells u them... listen to her, ackowledge them, and then re-enforce that you 2 will get through everything together & that you're not going anywhere. And remember, even if she doesn't say it nearly enough, every moment she's feeling lucky to be with someone like u that loves her no matter what.

                        GL man

                        Comment


                        • #13
                          Just the other day, I ran across a post that Sam made months ago and I had to pause for a moment to wonder how she was doing and wish her well.

                          I was sad to hear that she's having troubles....and you, as well. You sound like a loving and dedicated person and I'm so glad that she has you in her life.

                          Recovery from a traumatic injury, and hers certainly is that, is a journey and we don't travel alone, us injured. However, at certain points, it's difficult to see that. We become so consumed with learning to live with a new reality, carving out what we can in an existence that is completely foreign, that we tend to isolate and dwell for a time in a bubble. We may start out very positive and determined to beat the odds, but as time goes on, we get slapped with what our future will be.

                          It seems that Sam is at that point now. She's lost her confidence.

                          Not only that, she realizes what the future holds for you and in her depressed state, she can't believe that you would stick with her. She loves you so much that she's giving you permission to leave....and she's also asking for assurance that you won't. You may have to say it over and over. My husband and I have been together forever and he's been my rock since my injury two years ago. Even so, I still have to tell him, every now and again, that I'd understand if he couldn't make a go anymore....knowing full well what his response will be. I need to say it and I need to hear it.

                          Recognizing that the future is different will be important for both of you. If you speak as if nothing has changed, it will be difficult for her to believe you. Acknowledge the changes and that it will be hard for both of you at times. But, as a team, you will make it just fine...more than fine.

                          I would love to see her get some counseling or be with a group of injured peers. You seem to have a good plan for making that happen. Maybe she would visit here again? We would encourage her in things that would strengthen her and give her a sense of community that understands.

                          I remember Sam as such a vibrant soul and I'm quite sure that that girl will return to you. It will take time and patience and you seem to have those qualities.

                          My heart goes out to you both.

                          Comment


                          • #14
                            Many good ideas here, much better then I could give.

                            Honestly, I feel like most folks with SCI should be started on an anti-depressant medication while they are in rehab. It made me so sad to see people even in acute rehab fall in deep depression, and basically stop doing rehab..... It is a great loss, and they can't ever really get those crucial months back.

                            We are starting to learn that depression is a common symptom in most patients after stroke, heart attack, and spinal cord injury. I never understood why this isn't addressed from the beginning.

                            Therapy can be helpful, a support group can be good, but honestly finding one near you or a therapist you click with and who truly understands is rare. Working, going to school, getting out, living life.... all help, and all are hard during this early time.

                            So why not get a little extra help?

                            As soon as my mom was diagnosed with cancer, I made she she started an anti-depressant and it helped immensely. I waited too long to get my Dad treated after his SCI. He also did very well after starting a medication.

                            Why wait?

                            In fact, we have some pretty good neuropathic pain meds that treat pain AND depression - Cymbalta, Effexor, to name two. This may be a good way to introduce a treatment to her if you worry she will be resistant to a medication.

                            I would consider calling her primary care doctor or her physiatrist - whomever you feel knows her better/is following most closely - and tell them what you told us. Ask whether this might be a good time for an appointment, and for the DOCTOR to address this problem, and discuss options.

                            Good luck to you both.
                            Last edited by hlh; 08-02-2012, 10:39 AM.

                            Comment


                            • #15
                              Stay in the game. She is at a hard time now and all that has been said above me is so right. Show her our posts and know we are pulling for her.
                              Its more of a daily battle rather than recovery, I think I hate that word now.

                              And keep telling the girl you love her.
                              God that is the most important thing you must do.
                              It saved my life more than once.

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