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Thread: Am I being selfish?

  1. #11

    It has to be equal

    Look at the entire seven days in the week. Break each day down into the necessary tasks. Determine who can do what and is any outside assistance available. For his own sake he needs to be as independent a husband as he is physically capable of being. If you can, attempt to objectively assess what he truly can and cannot do. He must do the things that he can. If not, he won't have you at all. What will he do then. As a low para, I am pretty much independent. However, several years ago my wife had foot surgery that didn't go well. We were both in chairs. What an eye opener. The phone would ring and we would look at each other. The roles were reversed and I became her caregiver. I can honestly say that I didn't enjoy it. Yet I was pleased, when I could ease some of her burden. Disability does not change the need for an equal partership in marriage; emotional, financial, physical, and spiritual.

  2. #12
    Senior Member ~Patrick~'s Avatar
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    thank you

    I only read a few posts and knew I had to reply. I cant say anything but thank you. Thank you for opening my eyes to what it must be like to my wife. God bless all spouses that take care of each other.

  3. #13

    Spouses

    It must be so stressful for a spouse to be the caregiver. As a parent, it's just natural; you take care of your kids, and hope to one day produce an independent adult. My daughter's SCI was a setback in that process, but we're getting there. I'm almost ready to push her out of the nest...and she's ready to fly again, bless her heart! My heart goes out to the spouses, though. This is the place to be...to vent, and to have others understand.

    [This message was edited by Sci Mom on Sep 06, 2002 at 06:35 PM.]

  4. #14
    From Martha:

    "I'm venting and I hesitate to do so because this is the time I assume those suffering with SCI will jump in as they've done on other posts of this nature in the past and tell me I'm selfish and have no idea what they go through. But this isn't about them. I know they have it horrible. I'm not demeaning that at all. But this is about US, the caregivers in the trenches so to speak."


    Dear Martha,

    I feel I must respond here; it's true in the past that there were some pretty insensitive posts on the caregivers forum, but I don't think that's true anymore. I think our membership has matured to the point where we can be honest in our feelings on this forum - as well as others - without being attacked.

    We're all in this SCI life together - caregivers and SCI's; we all have problems dealing with difficult situations, but all revolving around spinal cord injury. We, as caregivers, have 'issues' as well as the folks in chairs, and if these forums aren't the place to vent them and get support, I don't know where the place is. The posts from other forum members in reply to this post have been sensitive and insightful, and my hope for the Caregivers forum is that they remain that way. The site in general,and this forum in particular is being monitored more closely to prevent inappropriate or insensitive posts and rants.

    I would hope that our newer members (as well as the 'old'timers') feel secure enough to post their feelings, frustrations, and triumphs without the fear of being ostracized for those feelings.

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

  5. #15
    Senior Member martha's Avatar
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    [QUOTE]Originally posted by Marmalady:

    I feel I must respond here; it's true in the past that there were some pretty insensitive posts on the caregivers forum, but I don't think that's true anymore. I think our membership has matured to the point where we can be honest in our feelings on this forum - as well as others - without being attacked. [UNQUOTE]

    Dear Jackie,
    You are absolutely, 100% right and you have my apologies. The posts on this thread have been very sensitive of the situation of the cargiver. I shouldn't have said what I did. I guess it fell into the old category of the best defense being a good offense and it was out of line. Wheelinarcher, Free, TD, Nevada (I scrolled quickly -- hope I didn't miss anyone) -- thanks for your obvious understanding of what your spouses are going through and for your kind words!

    martha

  6. #16
    No apology necessary, Martha!

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

  7. #17
    Senior Member TD's Avatar
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    What Marmalady said X2

    Those who do not agree have never been a caregiver.

    "And so it begins."

  8. #18
    Senior Member
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    Greetings

    One option perhaps that I haven't seen yet is the sci spouse
    could go into a nursing home facility.
    I was 25 when injured (July 18 1992) and after 5 months in the hospital
    went into a group home where I reside today. BTW I'm a C4-5 complete.
    I have owned my own home for 4 years and go there whenever possible.
    I was single before my accident but now working on g/f #2 after a 4 year
    relationship wentsour with the other.
    In either case I refused to move in together with them as main caregiver.
    I strongly believe that by keeping your personnal care and personnal
    life apart will help your relationship, or perhaps keep it from
    falling apart.
    The group home I reside in is like many others. There are a handful of
    caregivers who I like and vice versa who come at different times to help
    at my house. My g/f is a caregiver by trade as well so she doesn't
    mind helping me. I don't mind her doing some thing like feeding or
    dressing, but like to keep her away from bath times and especially b/c.
    I mostly spend days at my house. Through on-line banking I look after
    every bill, have a good man who does my yard work and all other projects
    for me who is now a great friend. I do range-motion exercises every Monday,
    Wednesday and Friday and have this nice physio aide lady who prepares meals
    and cleans when we are at the house.
    I know a nursing home or group home facility may sound out-of-the-question
    but it may be the last resort to save the marriage.
    Besides, your spouses may even appreciate you more after having to deal with
    a lot of mindless lazy care staff who always blow work shifts.
    Unfortunately, I would estimate about 50% or better fall into this
    category. But that's another story I don't want to get into.

    Just my thoughts,

    Paul

  9. #19

    Alissa's Hubby replies...

    Just thought I'd chime in with this advice," Start each day like it is the first day you spent together." My wife (c 5-6, 12 years) and I have been together for 5 years, and discover new things that we can both do every day.
    We've camped at 10,000 ft, hiked miles into the Montana wilderness, created computer animations, devised rickshaws, painted at 7 a.m., and whatever happens tomorrow with a fresh new attitude on the day. We know about the goo of life, the backbreaking effort of transfers, and the surprise visit to the bathroom at the grocery store, but we try not to dwell on these for it makes us gloomy.

    Tomorrow the sun will rise,
    Michael

    p.s. If you transfer into the bathtub, pick up a slider combination chair.

  10. #20
    Senior Member krajaxa's Avatar
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    caregiver

    I just would like to add to the number of you - spouses/caregivers.
    It's been approximately 17 months since hubby's accident. I have been his primary caregiver the whole time. His mom has come about three times a week in last 3 months (school cafeteria cook) just to help him/us with cleaning, shopping, little projects around the house. She is a wonderful lady that has been cooking for us at least once a week since the accident (I work 8am-5pm). I don't know what we would have done without her. But since my cleaning is done, I have time to help hubby with showers and bigger projects around the house like painting. Lots of project start with him saying I will do it, then realizes he can't do everything so I have to help. But it's our "special time together".
    We should be getting some more renovations done soon, so maybe he will be fully independent with taking care of himself (BTW he is t10 more complete than incompl. so far).
    For all of you out there who are still doing everything yourself, I have to add my voice to the once that suggested hiring an aide. If your spouse doesn't feel comfortable with somebody else giving him bath, they can still clean your house, prepare meals, so you can do the rest without feeling burned out. And try to get your spouse to do thing they can will do even if it takes them 10 minutes intead of you doing it in 5 mins.

    Good luck!

    P.S.: I gotta go to get some more painting done (hubby will clean up

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