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Thread: Need advise, am I hurting progress of my SCI husband

  1. #1

    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. #2
    Senior Member BeeBee's Avatar
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    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

  3. #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....."

  4. #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!

  5. #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.

  6. #6
    Senior Member kate's Avatar
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    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".

  7. #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.

  8. #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.

  9. #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)

  10. #10
    Quote 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!

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