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Am I being selfish?

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    No apology necessary, Martha!

    Tough times don't last - tough people do.


      What Marmalady said X2

      Those who do not agree have never been a caregiver.

      "And so it begins."
      "And so it begins."



        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,



          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,

          p.s. If you transfer into the bathtub, pick up a slider combination chair.
          "We must become the change we want to see in the world." Gandhi



            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 [img]/forum/images/smilies/wink.gif[/img]



              I'm glad you wrote what you did. I've been a member for a couple of months (and a caregiver for 25 years) but seldom post.

              The very first time I looked into this board, there was quite a lengthy thread going which started about Caregiver burnout and rapidly turned into "how dare you complain- what about us?" While no caregiver can ever understand what it's like to have SCI we have a much better idea than anyone OTHER than an SCI person.

              Because of the earlier topic, I have never posted that I get absolutely knackered at times, getting up 3-4 times a night, doing all the man+woman stuff around the house in addition to the personal care which able bodied people do for themselves.

              Although I seldom post, I do get comfort from coming to this board and reading the messages.


                Jools, I'm sorry you feel the way you do re posting; the situation that happened in the past hasn't happened again. As I stated to Martha, it was an unfortunate situation with a few of our more egocentric members. If you read the support given in this post by our general membership, I think you'll find nothing but caregiver support.

                Please continue to 'lurk', but know that you'll have our full support for your feelings and thoughts. We're all in this together, whether we be SCI, spouses, parents, or sibs! Jackie

                Tough times don't last - tough people do.


                  Jools, I definitely understand how you feel since that was the situation I had in mind when I posted. But I think Jackie is right. I now believe that the make up of the boards is different and that there is more understanding of our situations. There are certainly a LOT more members and reading this thread definitely reinforces the belief of more understanding. And, perhaps those that don't empathize with our situations are kindly not posting which is good too.

                  I want to encourage you to not only continue to lurk, but to post and participate as well. Jackie and Tag do a wonderful job with our caregiver's forum, but we need to hear from each other (at least I do). We need to know we're not alone in our feelings, we need to see how our contemporaries are handling things differently than we are and we need to support each other through this, even if only to say "I understand".

                  My best friend has a philosophy for life. She says in regards to EVERYTHING, "Better out than in". Seems to apply to emotions, tears, open communication, vomiting, passing gas or anything else she can think of. And I'm beginning to think it works. If we keep everything in, we'll explode. So feel free to let it out here! [img]/forum/images/smilies/wink.gif[/img]



                    Thank you to all of you

                    Thanks to all of you!! Care givers as well as spouses of caregivers.The support is tremendous. I have good days and bad days but I do chose to be be a care giver. I also choose to be his patient advocate. I have been second guessing some of these MD's ( major dieties) for 3 years now. Some fights I have won, some are still ongoing. This is a great site for support and the support from the SCI nurses, moderators and Dr Wise are phenomenal. I can't get a call back from some of these "MD's" around here but Dr Wise never fails to respond. Even from Singapore!!! and he doesn't hide behind the doctors "code of silence" ( my definition of those docs afraid to give an opinion that may differ from another's) I am so grateful for this web site...It's truly a life line.
                    [img]/forum/images/smilies/wink.gif[/img] Fran


                      New spouse looking for someone like her

                      I just registered on this site today. My husband has been using a wheelchair full-time since 1998. He has had a tumor in his spinal cord (benign, thank Goodness) since he was 15 years old, and it has caused havoc. We have two wonderful children, and I often feel like I "can't complain". However, I would love to make a connection with someone who knows what I am going through, someone who would understand my true feelings. Reading through some of the "posts", I can see there are people "out there" who clearly experience the same things that I do. I sometimes find myself throwing a "pity party" for myself when the need to climb a ladder to change a light bulb or carry heavy items arises. I joined the site for information sharing and support. I hope I can correspond with others (particularly other woman... with kids). I would love to "meet" others that can just listen and really know where I am coming from. My family and friends are truly supportive, but I can't help but think, "They just don't understand."


                        I resisted being called a caregiver

                        and still hate that term, which is probably just denial, but oh, well. I also have a pair of kids, momoftwo, now 12 and 14. How old are yours?

                        It's interesting that us wives of sci men share this bad juju about having to do the "husband stuff", as I think Martha called it. I have some of that, but mostly I secretly like getting to know how to use those mysterious power tools to fix what I used to have to wait for him to take care of.

                        Know what my biggest rage is? For all our marriage (16 years), he was one of those guys who just would NOT sort out his stuff. When he got hurt (18 months ago) there were two or three rooms where his things had just kind of accumulated unsorted in closets for a very long time. No problem, right? We didn't actually need the space . . . Hah! Guess who had to go through all that shit while he was in the hospital so the remodeling could happen? I always thought, you know, eventually he'd be forced to deal with it. BUT NOOOOOOO! I'm down to the last bits of odds and ends, finally, but I still get in a steaming rage every time I have to paw through another box where things he needs are all mixed up with old junk mail and photos of our kids and ticket stubs and broken pencils and God knows what.

                        I can hear you thinking I ought to make him deal with it, and you're probably right. Okay, you are right. Okay, going to shut up now. :rolleyes


                          Hi, Mom of Two, and welcome to the forums! We're glad you found us, even tho sorry for the reason. Gosh, why couldn't we all have met by the pool somewhere, instead of like this?! You will meet others here who do know what you're going through - because we all have! And you're so right about relatives, no matter how well meaning, not really knowing how it is.

                          And, Kate, LOL about all those power tools! You're so right! Do you watch 'Trading Spaces'? Isn't Amy Wynn just awesome!

                          I'm so glad to see y'all posting, and hopefully, you'll be chatting soon, too!

                          Tough times don't last - tough people do.


                            Trading spaces . . .

                            Now there's a concept that deserves exploration from us! Who would you trade with? (My old self, that's who . . . ) Nah. She was a good person but kind of lacking in a certain depth, know what I mean?

                            I was just up on one of those ladders the other day, applying sealant to the sawed off ends of the beams that hold up the top of our house. It's like, 30 feet in the air and I had to really focus not to think that if I wasn't careful there'd be two kids with TWO parents in chairs. Scary!

                            I just thought of a good new topic, going off to post it--

                            ps. Jackie, I'd LOVE to hang out with you all at the beach, the pool, the local Starbuck's, hell, even Home Depot. How will we ever pull it off?



                              Fixing things and remodeling

                              Hey, why don't we all meet at Home Depot or Lowes and do our own "Trading spaces" show? Wives of w/c husbands remodeling their houses....

                              I know Kate how you feel up on that ladder. I just felt like that about a week ago trying to trim some branches of our maple about 15" high (hubby fell 18"!)so our phone line doesn't get cut of by one of the branches during the storm again. I can cut the branches, not fix the phone lines...there's more involved!

                              So let's meet someplace...




                                Am I being selfish

                                Had to laugh this weekend, after all this discussion on this topic. Hubby is into Amature Radio (Ham) so needless to say we have antennas sprouting off the roof of the house. Problem is I DON'T DO ROOF'S, well this weekend he had an antenna start to come loose - guess who found herself up on the roof tieing things back down. He did try and find a fellow ham to come and take care of this but all that were available were the 70+ crowd. So up I went with him standing by at the base of the antenna (oh well at least it was a partnership). Antenna is fixed, I'm safely back on terra ferma swearing I will never do it again (at least not til it's a choice of doing it or damaging a few $$$$$ worth of equipment.

                                Now it's getting on toward furnace filter time and I HATE the crawlspace. Wonder how long I can put that one off. [img]/forum/images/smilies/rolleyes.gif[/img]