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Caregiving to my c5 c6 husband

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  • You are right Jen, I believe too he feels trapped in his own body and thinks he is worthless, useless. I also believe he he has so much love for you and the kids but is afraid to show it now because he doesn't know how, he doesn't even feel like a person. It's so very hard to explain. Tumbleweeds put it very well, necessity is the mother of invention. Just leave him be for a while and he will figure things out. You need to get ahold of yourself as well.

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    • ***update***

      Please go to the caringpage link to see what is happening to Alan and Jen now...and please send good thoughts and prayers...

      http://www.caringbridge.org/visit/alanhenley

      He has been taken ill with what may be a possible stroke, or possible allergic reaction to new meds...

      Thanks in advance for the thoughts/prayers...

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      • OMG, how dreadful. Firmly hoping for the best...my cousin today told me they thought she'd had one, but when the drugs cleared her system she was ok. So don't give up! You 2 are such an adorable couple, ppl care, and the fat lady has not yet sung.
        Blog:
        Does This Wheelchair Make My Ass Look Fat?

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        • There is yet another update on the CaringBridge site...prayers still much needed!

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          • A new update on the CaringBridge site, hopefully things are turning for the better!

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            • Caregiving is a process, a balance, something that cannot be learned overnight

              Hi,
              i just started looking at this forum. My husband is a c6/7 quad, pretty independent after 30 year. I was a practicing nurse when he was injured, which in some ways was helpful and others not. I knew what we were up against, but i didn't cut him any slack. I knew his personality, how he would want to live, unlike his siblings who could only sit back and say "why" or "that's the end for him", even though he had 10 brothers and sisters, i was the only one to help him through the rehab process. Now 30 years after the fact, no one else can face the fact that he can do most things independently, they still view him as a tragically disabled person . Which is probably why he has done so well, because he is being the person he always was and wanted to be. In fact, he does more and is in better shape than his 4 full brothers.
              That said, there are times now that we are getting older i would like to be sure there are family members ready to step in and help occasionally. I have back and shoulder problems from pitching in and helping with some of his projects, but i have had to start saying no i can't do that.

              The lesson of this story is balancing what is good for you and for him. And if you are committed to a long term relationship, keep in mind that his disability is not the defining theme of your lives together. I made that mistake and lost myself along the way. At age 56, i have realized that and we are reassessing things so that we both can have some peace and achieve our individual goals

              i will try to write more about our journey, i am glad i found this forum as we both have years of experiences and mistakes to share.
              Kristi

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              • My brother had a complete break of the c6 on July 20th. I have been searching the forum for advice and FUENTEJPS, you are an inspiration! I will have my sis in law Julie follow some of your posts!!

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                • I cannot thank you all enough for taking the time to write your responses out. They have ALL helped me in some way. I am still completely overwhelmed and feel so bogged down, but just knowing there are people out there who get and are so honest in your replies means so much to me.

                  Since Alan's accident I have had to take care of everything, from him, the kids, the house and I feel like there is no time for me in our lives anymore and that gets really hard sometimes.

                  It's also hard to try to make him want to do better when I'm not sure if it's his will or if he's capable. I don't want to push him to do things he cannot do but I also want him to become more independent, for his sake as much as mine.

                  Thank you all again...what a blessing you all have been in my life.

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                  • Jen, I have been following the Caringbridge link, there will always be up/down days. One thing that really stood out to me was a statement made be someone that went something like, don't look at what you lost but rather what you have left. There is so much truth in that. We can't change the past, we can make the best of our future. Continue working on what is left. Wishing you folks the best of luck and don't ever give up!

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                    • Hi Jennifer...

                      No... unfortunately our lives are never the same. My hubby is a T11 complete so I can't comment on the level of injury your hubby deals with. But... We have good friends and he was injured about 14 years ago and was a C-4-5 complete. He is now about 55 years old and has worked hard at independence... He now functions at a C6 level. He is amazing! Anyway... Their kids were small at the time of injury and his wife handled it all and she was amazing and still is. They survived... but many couples don't. In fact, the majority of couples we met at rehab are no longer together.
                      It's tough. He has to want to participate... My hubby had a psychiatric consult, at my request when he was in rehab because he was 61 years old at the time of injury and did not want to live. Luckily, he was able to come to grips and moved on. We also hid all his guns and it was a year before he even asked about them.
                      Your hubby is 50 and hopefully has many years ahead of him. If only he would come on care cure and talk with some of the people here.... this site is a lifesaver.
                      Please keep coming back... and let us know how you both are doing!

                      Love, Sieg

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                      • Originally posted by jenniferh View Post

                        It's also hard to try to make him want to do better when I'm not sure if it's his will or if he's capable. I don't want to push him to do things he cannot do but I also want him to become more independent, for his sake as much as mine.
                        My advice on that is to assume that he's capable, every single time. Seriously, he can't find out what he's able to do until he has to . . . and your job is to back off as far as you can.

                        Start small. Like, stage his shirt where he can reach it, with all the buttons done except the top one, and let him figure out how to put it on himself. One less thing for you to do, one more reason for him to feel like he's still a man. After he does it once, assume he always will, and go on to the next thing.

                        These hard, horrible days will not last forever.

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                        • Originally posted by cruffner View Post
                          My brother had a complete break of the c6 on July 20th. I have been searching the forum for advice and FUENTEJPS, you are an inspiration! I will have my sis in law Julie follow some of your posts!!
                          thx. never accept sci, or it will win
                          Bike-on.com rep
                          John@bike-on.com
                          c4/5 inc funtioning c6. 28 yrs post.
                          sponsored handcycle racer

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                          • I am a C-5 incomplete, but when I came home from the hospital a year ago, I was almost helpless. I read all the responses and a few things struck me. You wrote that you have to help him rinse when he brushes his teeth. I have an electric toothbrush that I am able to use by myself. To rinse, I use a large plastic cup with a built-in straw. I put the cup in the sink and fill it with water. I cannot pick up the cup to drink--instead I just bend a little and sip the water with the straw. If you can't find any cups like this, use a heavy plastic cup and a sturdy straw--Starbuck's ones are good. As for phones, I use a cordless one with big buttons and a speaker. If he can't push the buttons, have him use something in his mouth to push the keys. For example, I can't raise my arm to turn on the heat or AC, but I can push the on button with a Q-tip in my mouth. Finally, what really helped me at first was anti-depressants--not so much because I was depressed, but because I was incredibly anxious about everything.

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