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Thread: Where did -I- go?

  1. #1
    Junior Member
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    Where did -I- go?

    Well, I brought my husband Bob home Aug. 27th. He is a C5-7 incomplete,post 5 months. In the hospital at first he was willing to get all the therapy he needed. But the more time goes by the less he does. He doesn't even get out of bed until evening unless I make him get up and go to therapies then he wants right back into bed. He is loosing everything he had when first come home. I have tried everything babying him, pleading, I have even been rude. I have tried explaining to him that if he would get out of bed and do the home therapies, I am sure they would become easier and he could get some more movement and strength back in his hands (his left is better than his right). I have read some of these articles saying that they wouldn't give up on their husbands, and I felt that way at first but I am also taking care of a 4 yr old autistic child and a almost 2 yr old. And I don't want them to have to live their lives inside because he needs turned or cathed. I can understand he is depressed and maybe so am I but I have to keep going and I'm hurt and angry that he just gave up.
    There are a lot of feelings in there right now but the biggest problem is that I dont know who I am anymore. I spend 80% on him, 25% on kids(guilty that its not more), and 5% on the housework (usually only because it has to be done). So I am gone. Everyone keeps telling me I have to find time for me but their isn't any left I'm over my limit now example this is the first time on the internet since Aug.27th. Will he ever do what he can do. He told the therapist he didn't care if he was independant or not.That scared me.

    Thanks for letting me rant and getting some of this off my chest. I needed it.

    Cara

  2. #2
    Hi, Cara,

    We had a small topic around the 'who am I' subject this summer, and it might be time to 'resurrect' it;

    http://carecure.org/forum/showthread.php?t=10473

    We've all been there, losing our identity - and sometimes it seems like our sanity! - and our ability to smile, and find joy. You're in that overwhelming state of being primary caregiver, and spouse, and mom, in addition to being you. No small task, and no wonder you're feeling overloaded!

    I'd suggest a couple of things; first and foremost, set some limits with your man. DON'T baby him; MAKE him reach for things; DON'T bring him dinner - or breakfast or lunch - in bed; he's not sick, he can get up and eat. I wouldn't push him on working out or doing therapies - 'you can lead a horse to water, ya da, ya da'; BUT insist he do the things for himself that he's able to do; and he can be up in his chair and fetch the things for himself that need fetching. Are you doing his cathing? Can he use a wrist splint and one of the 'holder devices' for doing self-cathing?

    It's been said over and over here, that you need to be his spouse, not his mother or aide. If your insurance covers it, try and get some aide help in, even if it's just for bathing/bowel program stuff.

    Here is a link to the NE Medicaid Waiver program; perhaps you can get some respite care from them:

    http://cms.hhs.gov/medicaid/waivers/newaiver.asp

    Do you have friends/family who say they want to help, but don't know what to do? Let them go shopping for you; make 'em a list, give 'em the cash and let them go! Ask them to watch the kids for an hour or two, while you lock yourself in the bathroom with a bubblebath, a good book, and a glass of wine! Or go to a movie - or lunch with a friend, or whatever it is that YOU enjoy.

    I know how you feel,Cara; the 'you' that was before the accident just can't seem to be found anywhere. But I think you'll find that the 'you' who emerges 'from the ashes' is going to be a fine person, indeed.


    (((((((((((((((((((((((((((((HUGS))))))))))))))))) ))))))))))))))

    Post away; rant away! That's what we're here for! Jackie

    _____________
    Tough times don't last - tough people do.

  3. #3
    Cara, a couple of thoughts. I'm not in your shoes but I'm C6-7 and a husband.

    1. I'm sorry for your challenges. However, they will get easier. Time helps.

    2. Is there anyone else besides you who can motivate your husband whom he listens to and respects? His parents? a brother? sister? boss? friend? My point is that I think you need some help with this challenge. Don't be afraid to ask for motivational assistance you can't be superwoman 24/7/365.

    3. Does your husband use the internet? Even in bed he can read information posted here which may give him some incentive.

    4. Are you his caregiver?

    5. Do you have home pt or ot?

    Knowing a little more about your situation might help us provide you a better answer.

    Good luck.

    Onward and Upward!

  4. #4
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    I have checked on the waiver program but until the SSI kicks in and says he is disabled they will not help. So we're on the wait and see list. lol. I have tried to get him to get onto this site. He says he doesn't read or write well enough to understand what is on the pages, I explained to him I would help but he says "No". He will have to learn sometime because he will have to find a new trade. He can't paint electric static in a electric wheel chair.
    Yes, I am the caregiver, I have his brother staying with me but he doesn't do anything unless asked every time and won't cath or do bowel care. The rest of family offers to help but when I ask, they are usually busy or at another time. I believe they think if they don't touch him they don't have to believe it really happened, Other than a hand shake or hug they have never helped him transfer or move, one brother used to help tilt him in a manual chair. We put him into a truck (2 foot transfer-learning to do it myself) for his therapies in Lincoln and then drive his chair up a ramp into the back of the truck.(scary and going down is worse!) We've tried to get a van but he has to be this way for 6 months before any Insurance or Disability will pay. He does have some function in his hands (left more than right). He has nothing from the nipples down. But I do all the cathing. We've (I've) been having such a hard time with it that he refuses to try. So I need some info on a super pubic cath, the doctor wants to put one in next Friday. Is this something we can hook to and empty his bladder every few hours or does he have wear a bag always? He doesn't want the bag all the time, but when it takes 1/2-1 hour to get the self cath tube in, anything is better. He always has a UTI. Opinions from people with and without would help.
    Thank you to all that read and help, knowing others out there have gone through and are going through the same feeling and insecurities really do help.

    May we all become better people because of this.

    Cara

  5. #5
    Senior Member kate's Avatar
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    cara, cara--

    been wondering how it's going for the two of you . . . my suggestion is to tackle one thing at a time.

    example: ok, honey, you only need to learn to deal with this cath thing. if he's got "some" hand function, he can probably do it, given the right instruction. if i were you, i'd ABSOLUTELY refuse to do it for him. it shouldn't take more than 3 minutes, and according to my husband, it's "nothing", once you get over the IDEA of how creepy it is to stick something up there.

    another example: ok, pal, you've got to get the hang of taking off your own shirt. (or whatever it is you think he could manage but isn't trying to do.)

    the hard truth is, you can't go on like this, and you don't have to. you eventually will get righteously sick of being used, and then he'll find himself in a whole 'nother situation.

    the good news is, any tiny success can form the beginning of his belief that he can do a little bit more. you just have to make some room for him to have that little tiny success--which means, pick your first battle very carefully, then lay out your position, then stick to it.

    i hope this helps; i really hope you know we're here for you.

    kate

  6. #6
    Hi, Cara,

    I posted your questions re the supra-pubic cath on the Care forum; a lot of our members have had experience with it, and perhaps they can help you out; here's the topic:

    http://carecure.org/forum/showpost.php?p=18563



    So----------your brother in law is staying with you but not helping unless he's asked? I'd sit down right now and make a list of all your 'duties'; including housework and child care, as well as the care of your hubbie. Then hold a 'family conference' with hubbie and brother, and any other family members you can grab hold of. Tell them it's time to divide up the duties, or you're going to end up in the hospital yourself, and then where will they be? (This isn't an idle threat - it's happened, that caregivers get so stressed they crash and burn)

    And do remember that you're all still very much in the initial stages of grieving, processing, anger. Tell your family members that you're hurting just as much as they are, but it's all fallen on you to handle the day to day living things, and that you are hurting just as much as they are. And that you need some help!

    You may want to try your local Independent Living Centers and/or Senior Centers to see if you can get some respite care for yourself. They're usually connected with the local office on aging.

    Please know that we're all with you in this, and if we're not there in body, we're with you in spirit. Hang in, and get tough! Jackie

    _____________
    Tough times don't last - tough people do.

  7. #7
    Cara, a couple of suggestions.

    1. I would encourage the supra-pubic catheter. Given his function and more importantly his lack of motivation this method is much easier for both of you. If and when his function returns he can always graduate to self cathing.

    2. You mentioned UTI's. Two suggestions. A) He should be drinking at least 1 gallon of water per day. Try and lay off soda, alcohol, soft drinks. You may also want to consider cranberry tablets / juice which help ward off uti's.

    3. Let him practice dressing by himself. Shirts, pants, whatever. Practice makes perfect.

    4. Write a list of all the things you're doing for him. Hand the list to the others who want to help and ask them which ones they want to help with. Meals might be a good place to start.

    By the way, how accessible is your home?

    Good luck.

    Onward and Upward!

  8. #8
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    I really like the list idea and I believe that is where I can start. I do have someone coming in MOnday afternoon to evaluate him and find out his needs for home health care. In some ways this going to make me feel guilty because I should be able to do this but I am finding out I help him can't if he won't help. Maybe someone else coming in and caring for him will make him start doing for himself and it should cut down on a lot of him feeling like I'm bi***ing at him.

    We finally got the apartment we've been waiting 2 1/2 months for. It is totally wheelchair accessible, although he has a electric chair with tilt, so it is taller and doesn't fit in the spaces provided like under the sinks. He should be able to do everything else, if the desire was there.

    I have told him several times to cath himself or at least start practicing on it but he won't. And it is the same way with his medicines, if I don't hand them to him he don't take them but than grouched at me because he hurts and I didn't give them to him. All I can think of is give them to him because if he gets sick then it will be my fault and I would be the having to do more then too.

    I do thank you all for your help and input. And to all of you out there that have been doing this for a long time Bless You.

    Cara

  9. #9
    Senior Member BJ's Avatar
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    Where Did I go

    All of the suggestions made are terrific. But bottom line it sounds like he was allowed to 'get away' with this in rehab. Maybe he just didn't build up the confidence to do it himself.

    Having had friends go through Madonna and Craig I see a huge difference in skill level and ability. Don't know if that is applicable in this case but it is worth considering.

  10. #10
    Don't feel guilty about 'things you should be doing' for him; you're his wife, not his mother or assistant. He's a grown man, and needs to realize that you're both in this together.

    If he misses his meds, it's not your fault, it's his. Go to the drugstore and get one of those pillboxes for the week, with boxes for times of day. Once a week, the two of you can sit and get all his meds together for the week. Then all he has to do is have the appropriate day with him.

    I have a feeling that some of this is addict behavior, and probably was present before the accident? I asked before, does he have an NA sponsor? I'd suggest having someone from NA come and talk with him. Have you been to AlAnon meetings? (I know, probably no time to go!) But I think you'd get a lot of support for yourself there.

    Good luck, my friend; know that you have the support of some wonderful people here! Jackie

    _____________
    Tough times don't last - tough people do.

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