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Caregiving to my c5 c6 husband

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    #31
    Thank you for all of the great replies. I am new here and I have no idea how to get the private messages or how to send one.

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      #32
      Hi Jennifer, you may want to look into going through a state agency to get a caregiver so you're not doing all the work. Or else hire someone for a couple hours a day to help you out so you don't get burned out and decide to leave your husband. I can't imagine how hard it would be to take care of your husband after an injury like this all by yourself. I have several caregivers so not one of them gets burned out and my parents don't have to help me. Good luck getting everything taken care of
      C-5/6, 7-9-2000
      Scottsdale, AZ

      Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

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        #33
        Originally posted by jenniferh View Post
        I have another question, how can a quad at his level ever be by himself? I can't leave him alone because he can't do anything for himself.
        This is how it feels now but you need to look at absolutely EVERYTHING and work out if there is a way for him to do something more for himself. Good rehb is essential. You'll be amazed at what he can do if he tries. I work full time, shop, cook for myself, cath independently.....

        I'm C5/6, not fully independent but I only have 1 hour of PCA help in the morning and half an hour at night - imagine if you could get to a stage where that is all you need to help him with? You need to work towards it to protect your marriage.

        I looked at your pictures, your husband looks pretty fit for 50. A manual chair will help him build strength but the caution should be there to strike a balance between that and preserving energy and shoulder fitness.

        If you can get him online here he can communicate with people such as myself, fuente, Shaun, Van Quad and many others who can help him understand the 'tricks of the trade'.

        Everyone is different - health, fitness and state of mind play a part but you also need to ditch the mindset that he can't do anything.
        C5/6 incomplete

        "I assume you all have guns and crack....."

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          #34
          Jennifer,
          Welcome to Care Cure. Sorry you had to find this site but glad that you did. Is your husband by chance a Veteran. If he is get him to your nearest VA Spinal Cord Injury Center. Has any one done any fund raisers for him & family? If not see what you can do to get one started & set up a fund that won't hinder anything that your husband might be elegible for.

          My heart goes out to you. I hope that soon your husband will become more independent & take some of burden off your back. As time goes on he should improve. His spine might still be in shock from the injury. Sorry to hear that your insurance won't pay for him to go to the Sheperd Center in Atlanta Georgia.

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            #35
            Originally posted by jenniferh View Post
            Thank you for all of the great replies. I am new here and I have no idea how to get the private messages or how to send one.
            Look up towards the top right of your screen where it says "welcome,...." you should see "Private Messages" just click on it.

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              #36
              Oh yeah, by the way, I'm a C-5/6 quad myself, mostly C-5, push a manual chair but not fully independently, live alone with caregivers coming in twice a day for a total of 5 1/2 hours a day of care which I wouldn't need all of if I wasn't on bed rest right now and I have no problem calling the local taxi service if I need to get somewhere when my caregiver can't be here with the state paying for it. Give your husband the chance to try to do stuff on his own. He might surprise you. Leave him by himself with a couple of ice water, a big cup, sitting on a table that he can get to with a straw in it and teach them how to lead over without falling so he can get his own drinks. There is absolutely no reason for you to NEED to take care of him 24 hours a day. I survived just fine the other 19 hours a day when I don't have someone around for six or seven hours at a time. And that night, I don't have anyone here between 9:30 p.m. and 10:30 a.m.. I keep a phone near me and a lifeline button in case of emergency happens and the cup next to my bed with a long tube sticking out of it for a straw. If you pamper him all the time, he'll never be oldest do it on his own if he has to.
              C-5/6, 7-9-2000
              Scottsdale, AZ

              Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

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                #37
                I had no idea how hard this was going to be. But trying to care for him full and raise two children has left me feeling like I just don't know who I am anymore. I'm so tired all of the time and I feel so alone. This situation seems like there is no way out. I have tried so hard to be faithful to God but right now I'm failing miserably.

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                  #38
                  None of us know what is next in life, we just play the hand we were dealt. The good Lord never gives us a cross bigger than we can carry. I am a C4-C5-C6 quad, have been since 1970. Your husband looks to be an outdoors kind of person, chances are that he will enjoy the same things he used to now as before his SPI. Attitude is important, don't ever let him give up and don't give up on yourself. If there is a way and if he really wants to do something, he will find it. I feel bad that you should have to be his only caregiver. At first I felt useless, worthless, unwanted, helpless and the list goes on but those that cared kept pushing and I listened. Now I don't feel any different than anyother man. I do believe some good physical therapy would help in getting those arms, hands, fingers going and the better he feels about his accomplishments the better the rest of you will feel. And please don't feel that you need to be doing everything by yourself, it may be because of pride but there are others around that are more than happy to help if they know what needs to be done. God bless and the best of luck!

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                    #39
                    How are any you that are quads using the computer and what about cell phones? We are struggling with both of these options.

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                      #40
                      Originally posted by jenniferh View Post
                      How are any you that are quads using the computer and what about cell phones? We are struggling with both of these options.
                      Hi Jen, my fingers curl slightly at the ends and I can cock both wrists to achieve a "quad grip" or make fists.

                      I type on a standard key board by bracing my middle finger against the tip of my thumb and hitting the keys with the tip of said middle finger. I used to be a two handed typist but as I've grown older my balance has worsened and I tend to brace myself with my left arm now.

                      I use a cordless mouse which I hold in a half fist sort of grip and operate the mouse buttons with the ball of my thumb.

                      As for cell 'phones the newer ones are a pain as the buttons are so small but if you look at the cheap ones that are just 'phones the buttons tend to be bigger and I can dial a number in the same was as I type.

                      Hope this helps,

                      Jonathan.
                      Last edited by Timaru; 27 Jun 2009, 5:12 PM.

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                        #41
                        Jenn as you read these posts you can tell

                        everyone is different functioning. Your husband is a newborn. It won't get easier for a while. I'm a c7-c8 inc. sp/32 years. I'm 95% independent in all aspects. It will take time, frustration, trial and error but your husband will be able to do more. Attitude is key. It took me years to get where I am.

                        Your case is different. Your the spouse of a person who has SCI. Plus 2 young kids. You have a lot on your plate. You will have some tuff decisions to make down the road. Only you can make them.
                        Lynarrd Skynyrd Lives

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                          #42
                          Unlike most quads I do not have a clinched fist or curled fingers. From the beginning I wanted straight fingers as I felt they would be of more use and to me they are. I am a hunter and use my straight thumb in the trigger guard while pulling back my arm to fire a gun. The finger next to pinky on right hand is for keyboard punching and as mentioned earlier, cell phones are tricky because of being so small. I use an older one with no text, just for dial out if needed and using middle finger as it is long, straight & stiff. It doesn't interfear with the other buttons. Have worked my fingers all these years with a simple rub, bend and exercise with a rubber band nailed on a board. Boreing as hell but it gets the job done.

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                            #43
                            Hi Jennifer

                            Just wanted to say that I get how hard it is to suddenly find yourself having to do every last thing . . . the house, the bills, the kids, the planning, the meals, the errands, changing every light bulb, dealing with the car . . . and how overwhelming it is when it hits you that this is it, just you, from now on.

                            Aaaahhhh, what a terrible, crushing thing that is. I remember just sitting there going, I can't. I can't.

                            But -- as it turns out -- that's not really the way it goes, hard as it seems to believe right now.

                            The best thing I can tell you is to never, ever do anything for him that he could somehow manage for himself. In the hospital they drilled this into me, thank God. If it takes 20 times longer or 100 times longer, it doesn't matter . . . what matters is having the patience and love to wait instead of doing it for him.

                            I thought sometimes I would go insane trying to learn how to be a wife in this situation, eh? But I did, and you can too. You're here, which is a huge and good first step.

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                              #44
                              Yesterday I think was the hardest day we've ever had. We both got mad at each other and said some really ugly things. What I think we were mad at is the reality of our situation, not each other. It just seems like it's not ever going to get better and yes, everything is on my shoulders. I can't even get sick, I can't take a nap, etc.

                              I just don't get it...why???????

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                                #45
                                "Why" is a question I try to stay away from, for my own sanity. Also the phrase "It's not fair," which is guaranteed to send me to a dark and wretched place that I then have to crawl back out of. Not worth it.

                                There's got to be a way for you to get a couple of hours to yourself, eh? A neighbor to look after your little ones while you sleep? A church group looking for a way to be helpful? I don't know where you are, but there has to be a way.

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