Announcement

Collapse
No announcement yet.

Need advise, am I hurting progress of my SCI husband

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Need advise, am I hurting progress of my SCI husband

    I really need some advise here. My husband was injured 3/06. He is a C6/7 incomplete with very good arms and hands. I am his caregiver. He has been amazing and is already back to work. He works 90% from home but does have to visit customers locally as well as a bit of travel. I have been on two trips with him since his return to work in October. We are wondering if I am doing to much for him and if I wasn't helping him, he would have to be doing it on his own. It bothers him that I do so much, but I really don't mind. At the same time, I don't want to be holding back progress. Basically I help him to bed every night, undress him and put him on one side with pillows behind his back, between knees, etc. Then I cath him at about 1am and turn him to the other side. We get up at 6 to 7 am and I cath him. Every other day I help him with his bowel program. Suppository and commode chair to toilet, then back to bed to clean up and I dress him. Once he is up, he is pretty much on his own all day. He does his own caths during the day. He usually gets in his zero gravity chair at lunch and I get him lunch so he can rest before going back to his desk to work. I help him shower a few times a week, we don't have a roll in shower yet. Sorry if this is too long...

  • #2
    He's still very new, but the ulitmate answer is that he needs to do as much for himself as he can. It's really hard to let go and it probably makes you feel better to help him, but you are not really helping in the long run. If he can cath himself during the day, he can do it at night. He can most likely learn to do his own bowel care. Help with showers until the right equipment is obtained, then help him to learn to use it. The more he does it, the faster he'll get. And you'll last longer. Save the help for things that he really needs it for (God know, there will be chances aplently) and you will both appreciate it. He won't mind asking for something if he hasn't asked in a while, and you won't build resentment (yes, it can sneak up on you) for doing things that he can do.
    BeeBee

    Comment


    • #3
      Are you saying his hands work?

      Each to their own but if you are asking the question here you probably already know you are doing too much.

      If he can cath why are you waking up to do it?
      C5/6 incomplete

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

      Comment


      • #4
        [QUOTE=RehabRhino

        If he can cath why are you waking up to do it?[/QUOTE]

        Why is anyone waking up to cath ? Cath right before you go to bed and you should be good until the morning.
        Tough Times Don't Last...Tough People Do!

        Comment


        • #5
          I guess it's just easier for me to do it at night. HOw would he turn over with the pillows, etc. He would have to turn the light on and put on his prism glasses, it's just hard. He has so much trouble sleeping, we're afraid if he doesn't sleep, how will he work the next day. Maybe we need someone to tell us what they do at night.

          Comment


          • #6
            Okay . . . you asked if you're hurting his progress, and in my opinion the answer is yes.

            My husband also has a c6 injury (3/7/01), and has full use of one hand. They told us at the hospital that anything he was able to do on his own, I should let him do, no matter how much trouble it was, how long it took, or how frustrated he got. I remember once in rehab, the OT was about to show him how to brush his teeth . . . the toothpaste was across the room, so naturally I jumped up to get it for him. The guy stopped me and we both waited while he painfully wheeled himself into the corner, got the toothpaste, backed up, and wheeled himself back over to the sink. It took like 5 minutes, but I learned to hold myself back.

            Because we started out with that rule as a guideline, we never got into a situation where he was depending on me to do things just out of convenience. That would have driven me up the wall . . . plus we had young daughters who very much needed to see their dad as an adult. Emergencies, yeah--like when he was running late or was feeling dizzy or whatever--then I'd give him a hand. But it was always, always the goal for him not to need me at all.

            I do realize that every marriage is different; he was always an independent sort of guy and after the accident, just hated to be treated like a giant child. And I had known since I was like 10 years old that the last thing I ever wanted to be was a nurse! I've never done his bowel thing. I stopped helping him turn over in the night as soon as he could do it himself, and when he went to intermittent cathing, it was all him. Once he was done with leg-bags, I never washed his supplies, either.

            There are a ton of people here with more disabling injuries than your husband's who live alone. For us, it was a good rule: if he can do it, then he must do it. Every time. I have no doubt it helped him recover more and stay healthier than he might have if I had been "helping".

            Comment


            • #7
              In your post you said "we were wondering if I'm doing too much for him."

              If he's wondering then yes, absolutely you're doing too much. He should do for himself anything that he can. If it takes a while to turn on the light and put on his glasses, well, then it does. I sleep with a foley each night, some people don't need to cath in the night. There are options.

              Bottom line, this is hard. It's inconvient and ABs can do many things faster or easier than I can and it sounds like the same is true for your hubby. But, just because that is true, it doesn't change the facts that we are capable adults and able to care for ourselves. I think he'll feel better about himself if he takes care of himself. You've got to let him struggle.
              My blog: Living Life at Butt Level

              Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

              "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

              Dawna Markova Author of Open Mind.

              Comment


              • #8
                Are you hurting his progress? Yes, IMO.

                If he has use of hands and arms, it's time for him to cath himself 24/7. Why would anyone else do it?

                Like others here, not sure why he's cathing at all hours. He can limit fluid intake x amount of time before bed, sleep through the night. He'll have to learn what works for him.

                Even if he has to cath at night, so what? He turns on the light, pops on his glasses and does what he has to do. Whether his glasses are prism or not has nothing to do with putting them on. Lots of people need their glasses when they want to see, whether ab or dis.

                How would he turn over at night without you? He'll find a way. If he has his arms and hands, he can turn himself. Sure it'll take longer than if you do it, but there's much to be said for self-sufficiency, self-care.

                I'm not a fan of others doing for me what I can do for myself. I live alone with minimal help from family, friends.

                Granted he's a relatively new injury, but it's time to cut most of those caregiving strings.

                Kudos to him for returning to work full-time. I'm thrilled he's gotten so much return.

                Comment


                • #9
                  Wondering why he still needs prism glasses? Is he still in a halo???

                  At his level, we would expect him to be doing his own turns, his own range of motion exercises, independent level transfers, bathing totally independent (with standby assist for the transfers), his own caths and bowel program and his own skin inspection. He should be independent in dressing and undressing his uppers (and some become independent with shoes, shocks and pants, although this is more difficult). We would also expect him to be able to do light meal preparation (fix sandwiches, get cereal for breakfast, warm things up in the microwave, etc.) and light housekeeping (laundry, make his own bed, etc.).

                  It may be easier for you to do it quickly, but in the long run, you will burn out and he will loose the benefit of being as independent as possible. What will he do if you get ill or disabled yourself? You should be able to leave him alone for a weekend away with your female friends or to visit family. It doesn't sound like that is happening. A basic tenant of rehab is that self-esteem is enhanced by self-care. In addition, self care is therapy, and should be viewed this way by both of you. Use it or loose it.

                  (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


                  • #10
                    Originally posted by SCI-Nurse

                    It may be easier for you to do it quickly, but in the long run, you will burn out and he will loose the benefit of being as independent as possible. What will he do if you get ill or disabled yourself? You should be able to leave him alone for a weekend away with your female friends or to visit family. It doesn't sound like that is happening. A basic tenant of rehab is that self-esteem is enhanced by self-care. In addition, self care is therapy, and should be viewed this way by both of you. Use it or loose it.

                    (KLD)
                    Amen!
                    My blog: Living Life at Butt Level

                    Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

                    "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

                    Dawna Markova Author of Open Mind.

                    Comment


                    • #11
                      My advice would be to let him do as much as he can. My husband is a C3-C4 complete quad with no arm function at all. He is 100% dependant for everything. Believe me, after a few years, it gets old. I know that he can’t do the stuff for himself, but I get very tired, and it will start to take a toll mentally and physically on you over time. I say let him be as independent as possible. There are things that he might never be able to do like change ceiling light bulbs, cut the grass, shovel the snow, clean the windows, carry out the heavy garage, change the furnace filter in the basement, take his broken wheelchair in for repair, clean the shower. You get the idea. Save yourself for all of this stuff. There will still be plenty for you to do which will help him out while still letting him take responsibility for his own care. Just my thoughts.

                      Trish

                      Comment


                      • #12
                        Thanks for all of your input. I must say, you all make me feel like I've been hurting him instead of helping him. THANKS A LOT! I have only been doing what I thought I was supposed to be doing. Nobody has said different, until now. Keep in mind that my guy had a goal to get back to work at six months post injury to provide for his wife and 3 kids. He has done that. He drives and visits customers on his own, even as far as 3 hours away. I assist him every morning to make sure he is at his desk at 8am. With my help it takes 2 hours on bowel days to get him ready. I would love someone to tell me how he is going to do that on his own. (I guess if he gets up at 4 or 5am...) I feel I am helping him so he can work, so we can live! Isn't that important?

                        Kate, did your husband return to work at six months post??? Does he have a schedule to adhere to?

                        Comment


                        • #13
                          He is not in a halo. He needs the glasses while in bed to do cath. HOw else do you recommend he cath in bed? Should he sit up? ANyway, we are going to try to cath before bed and go through the night tonight. I haven't had a full night sleep in over 6 months. He does his own bathing, I just help him into the tub. As far as meal prep, he has a lot of nausea/light headedness in the morning,so I always give him breakfast in bed, because it seems to help. Any advise here would help. We are very ready to try and make him more independent.

                          Comment


                          • #14
                            Naridevoli-

                            You asked our opinion but you're getting defensive about the opinions you got. We know you're not trying to hurt him; we're just giving you honest answers from experience.

                            Everybody is different, every injury is different, every marriage is different.

                            You asked what we do at night. Well, we all struggled until we got strong enough to roll over. I haven't done the whole pillow routine since shortly after rehab. My husband used to help me dress. My PT hollered at me about it. He never helped again. My time went from an hour and a half to a couple minutes, it was a matter of technique, practice and strength.

                            Maybe your husband can practice his bowel routine on weekends. Eventually it will take him no longer than it does you to do it for him.

                            You 2 have to work out what is best for him and you. I firmly believe that the more independent he can be, the stronger, healthier and happier his life will be. You're not indestructible. If you get sick, die or leave him, he'll have to hire a PCA to help him use the bathroom. That's ridiculous for a c6-7 injury.

                            A big glass of water 15 minutes before getting out of bed will help his dizziness (that is from low blood pressure.) There's also a medicine for low blood pressure that helps a lot, ask his doctor.
                            Blog:
                            Does This Wheelchair Make My Ass Look Fat?

                            Comment


                            • #15
                              I just wanted help and support. I thought that's what carecure was about. We obviously know that he should be doing more, that's why we asked.

                              Comment

                              Working...
                              X