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Doing the best that I can!

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    Doing the best that I can! husbands's injury was 9 weeks ago. He is a T12 asia A complete. He is still in his TLSO. We have been out of in-patient for 2 weeks. We are staying at a hotel while he is in outpatient. He goes 5 days a week. We are 3 hrs away from home. We have went home 1 weekend in the last 9 weeks. While we was in the hospital I learned soooo much and did most all of the caregiving. I wanted to start doing it then so that I would know what I needed to do when we left. My husband always told me what a great job I was doing and how thankful he was to have me. Sometimes it bothered him so bad to have to ask me to do something for him. I have been sooooo tired and I just keep going. It's nonstop all day long. I never have a minute. I look a HOT MESS!!! But I have never complained. I don't want to. Sometimes I want to go outside and scream my head off.(But since we are in the city...they might commit me somewhere for being crazy! Ha)......After saying all that....this past week has been rough. My husband has been so ill. I understand his frustrations. But it seems like I can't do anything right. And I am doing things the same way that I have always done them. He just seems so upset. I guess since I am the only person around I am the one who get it took out on. What could have caused this sudden change? Will it get better? Thanks I needed to get that out of my system.

    Hi there,
    You have done nothing wrong. While you are going through so many changes it is easy to forget so is he. It is my son who has the sci and when he first came home it was so difficult. It seems like you never stop and always on the go. Fatigue becomes a daily thing. Then there were the days he would be so cranky and nothing I did was right. It would upset me until I realized it was totally normal for him to feel that way. I knew if it was hard for me it was twice as hard for him. When someone is used to getting up and walking and doing what they want, and then can't even move without help, it has to be one of the hardest things. Think about it, they can't even get a drink if they are thirsty or food if they are hungry. The early part is the hardest.
    I can honestly tell you that yes, it does get easier. David was in the hospital for 4 months and rehab for 2 months. He finally got home the end of November. When I think back to that time and now, it is a world of difference and he is still confined to bed except for 2 hours a day. He came home with some wicked pressure sores that thankfully are almost healed. Then he will go to outpatient rehab for some more therapy. When he is in his chair those 2 hours, he is so happy. He goes outside and he also has started preparing food. Every day is better as he gets healthier. Once he gets more therapy and can start transferring himself, things will be even better. I remember back then when people would tell me things would get better, I could not imagine it at all. But, they were right. Hang in there and when you need to scream, come here like I did and so many others.
    DavesMom, Diane


      I am sorry to hear your frustrations. I wish I could say something to help. My husband is T4 complete. He is pretty independent, we are a year and a half post injury. I am not sure if it gets easier. So far it just changes often. We face one problem and another comes up. I dont know what to tell you, this is all so difficult.
      I know that this web site has helped me the most out of anything. I dont know what I would do if I didnt have this resource!
      I always hear the first 3 to 5 years are the hardest, so I am hoping in a year and a half some light will shine on us.
      Good luck, try not to take things personal. Talk with him openly. I know with in the last couple of weeks my hubby just realized how hard all of this is on me too. Be sure to take time for your self, you cant do it all.


        If you look around here, one of the best things you can do to preserve your relationship is to get caregivers to help him out so you're not overburdened. It's bad enough you have to deal with the fact that he's injured, you shouldn't have to also deal with all of the care he needs now. Find out if he can get on Medicare or a state agency to get caregivers in the house. It will drastically help everything I'm sure.
        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.


          Originally posted by rybread View Post
          If you look around here, one of the best things you can do to preserve your relationship is to get caregivers to help him out so you're not overburdened. It's bad enough you have to deal with the fact that he's injured, you shouldn't have to also deal with all of the care he needs now. Find out if he can get on Medicare or a state agency to get caregivers in the house. It will drastically help everything I'm sure.
          Great advice if you can. At his level he should be independent within a year if you can get him some good rehab
          C5/6 incomplete

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


            What everyone else said! My son is SCI (t-12 ASIA A Complete as well) and the first few weeks at home were so very exhausting and frustrating. The meds, the rolling every 2 hours, the cathing, the BP, you know the story. Although he never complained, I was constantly "doing things wrong" and he would get frustrated with me. Once his TLSO was OFF, things started getting remarkably better. As I look back to where we were (he's 7 mo. post) and where we are now... WOW, it's a whole different world. This is a very trying time for both of you, but you can and will get through it. Do you have anyone you can talk to that will JUST LISTEN? Feel free to PM me with your number and I'll gladly listen.
            FAITH: Is not believing God can, but knowing he will.


              The one thing I did fail to mention is this. When David was in shock trauma for 4 months he was very sick with multiple life threatening injuries. There were days he would just be plain mean. I was told then and there that while it is okay for him to be frustrated and upset, it is never okay for him to be verbally abusive. While that did not last long thankfully, I realized what they said is true. When David was upset over his situation or yelled because he felt I didn't do something right, I would just tell him, Look, I am learning the same as you. This is as new to me as it is to you. Yelling does not help anything. Most of the time it worked. If not, I was told to walk out of the room until he settled down. That worked too but when I did that, I always let him know that I would be back. So, if your husband is frustrated that is okay, but he should never take it out on you. As caregivers, we have to establish that with them.


                Hi there, I'm a T-4 T-5 para who has been paralyzed for 13 years. These folks are right it does get better as better can get depending on him. every para and quad are different in way's that there will be some things that he can do that another para with the exact same level of injury might not be able to do. Allot of his frustrations are coming from deep inside, He may feel lost at times even though you're right there. He may also be feeling pain that he doesn't know is pain. Remember this is all just as new to him as it is to you. And unfortunately you are probabely learning about this faster than he is and that is also very frustrating. My wife and I have been married for 24 years and she stuck this out with me through the grace of God she didn't run on me. All good things take hard work and a whole lot of patients.Hang in there it will be worth it. After my injury I was able substitute school the last six years my children were in school, I went back to school. The possibilities are endless. Bottom line it will get better lots of luck you will be in my prayers.


                  It WILL get better. You said only 9 weeks?

                  The TSLO is keeping him from doing a lot that he will be able to. Once it is off, I think you will see a big change.

                  I am t7-8, and am completely independent. (As long as I can reach it, lol).
                  He WILL get there, honest! I didn;t go home until 16 weeks, and I am guessing then, maybe 75% .... I still needed help getting out of the shower at that time, and with turning at night I think. And with household routines, that needed adapting. But by then I didn;t need any help with the cathing.dressing.grooming etc routines. The turning help only lasted a bit more, until I figured out how to manage it myself in my own bed. So there is a light at the end of the tunnel. Honest.

                  And the fact that you are not home, but dealing with living in a hotel, that just makes it tougher.

                  Important thing .... get the most out of this rehab. Make sure they are teaching him how to do everything himself .... he should only need your help until the shell comes off. After that, he should be able to learn how to do everything himself.

                  As far as the change, I am guessing he is just gtting as frustrated as you are with this whole thing, and it will pass. There is no reason you can;t let him know how hard it is on you as well. Don;t feel you have to hide that.

                  He is at rehab 5 days a week. Do you spend the whole time there with him? It sounds like you need a break .... can you take the time he is there to do something for yourself. Get your hair done and a manicure, spend the afternoon at the library, go for a long walk or go window shopping, whatever interests you. I don't know how long he is there, but grab a few hours and spend them on YOU.

                  I know you are in a hotel now, but are plans being made as to what you need at home? Obviously a ramp, and a bathroom he can use. Those as the critical points. We adjusted the height of my bed, for easy transfers. Rearranged things in the kitchen so that I could reach the important things. (A year later we did some remodeling to lower counters, and put in a roll under sink, but we didn;t have the funds to do that right away). Made some changes to my closet. That sort of thing.

                  I am thinking if the two of you spent some time planning on how you will make you home such that HE CAN do everything, it will help the two of you visualize him no longer depending on you for so much. Good luck, hang in there, both of you.
                  T7-8 since Feb 2005


                    Everyone's advice is spot on.

                    The only thing I would add is to make time for yourself. When he's in PT or OT or whatever, go back to the hotel and take a long, hot bath or shower. Pamper yourself. Go get a haircut, chocolate, iced tea, whatever it takes. You need some time for yourself.

                    And everyone is correct, it will get better in time.
                    Ugh, I've been kissed by a dog!
                    Get some hot water, get some iodine ...
                    -- Lucy VanPelt