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    Well I'm sending out a big SOS. Really having a tough time keeping myself together today. The short dark days and snow are adding to the isolation I am feeling.
    Dave has not been breathing well with his speaking valve on so very quiet except for clicking when he needs something.
    I hate seeing him in pain and am trying to keep a brave face on.
    His short term memory is puzzling us. I miss help making decisons.
    He is as sweet as ever and my heart just broke all over again today.
    I don't want to talk to friends because there just isn't anything to say.
    People don't tell me their troubles because "I have enough on my plate."
    The aides are getting on my nerves in ways that are hard to explain

    I was trying to change the circuit on the vent and the parts would not line up. Cheap plastic shit. I threw it hard on the floor in frustration and scared Dave -jarred him nearly into tears.
    It is really hard to get away for even a short time, and when I do it hurts.
    My daughter is having health problems and lost her insurance shortly before they started. She had a bone marrow test that ruled out some bad things at least.
    Sorry to be a downer. This isn't easy for any of us.

    Comment


      Originally posted by LindaT View Post
      Well I'm sending out a big SOS. Really having a tough time keeping myself together today. The short dark days and snow are adding to the isolation I am feeling.
      Hi Linda,
      I think you need a lot of these today.
      http://www.youtube.com/watch?v=vr3x_RRJdd4
      Hope tomorrow is better. You will be in my thoughts.
      NL (GJ's wife and caregiver)

      Comment


        Originally posted by noregrets View Post
        This is my first time reaching out in any way in dealing with my husband accident. But if I don't do somthing I feel like running away and never stopping. But I know that this is just a feeling. I just need some one to just listen and get what I am feeling. To tell me that I do have rights to hurt, cry, get mad, and yell. with out being judge that I can't handle this because of it.
        Hi, and firstly welcome to the forum. I think it's about the best one!

        I try to imagine what my wife felt after my injury. It must be tough for you, but in time you will both adjust, and things should look better.
        2010 SCINet Clinical Trial Support Squad Member
        Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

        Comment


          Originally posted by LindaT View Post
          Well I'm sending out a big SOS. Really having a tough time keeping myself together today. The short dark days and snow are adding to the isolation I am feeling.
          ........
          I'm sorry you're going through a rough patch Linda - I hear you about the short dark days - living where we do compounds an already difficult situation. I was lucky enough to have my sister get me one of those uv lights that mimics sunlight .... its supposed to eleveate the symptoms of "sad" (seasonal effective disorder http://www.day-lights.com/treatment-benefits/index.html ). It works for her so I hope it helps me - maybe its something you should investigate for yourself {{{{hug}}} .

          You will find it becomes more and more important to do everything you can to help make your life more tenable - because as the days go by the reality of this new life really starts to settle in - it's like the enthusiasm so necessary in those initial days of being injured begins to wain and life continues to go on ... with ... or without us. Friends and family, g-d bless 'em, go on living their own lives and it feels like they find their own comfort zones ... leaving us to tread the unpredictable waters we live in. They're in a no win situation really - I find myself alternating between intense feelings of gratitude and resentment for them ... wishing with all my might I didn't have to depend on others for help with the what is the simplest tasks in an able bodied household. It just gets so old - and I find myself more and more over the years leaving things undone because I just can't bear the thought of having to ask .. yet again - while at the same time being angry they don't ever seem to think .. to offer .. (you know - like they should be able to read my mind ) ... so I don't have to ask {{sigh}} .

          It's why this place becomes so important to us - more so as time passes - but for different reasons then when we first came ! You have done such an amazing job of hanging in there Linda but I don't have to tell you how human we are and that we simply must ... must allow ourselves to be the one to be cared for now and then ...... (even if we do ... have to ask ).

          So this is for you sweetie - remember .... you never have to apologize for feeling your feelings here .... it's the rules ...... and you know ... we used to have this stinky little pipe that we'd share ... and pass around .... now and then .... along with the ice cream and the Enya cd ...... gone again .... that damn Deb ..... or maybe ..... maybe its Martha that's had them all this time

          Last edited by Obieone; 25 Nov 2010, 8:00 AM.
          ~ Be the change you wish to see in the world ~ Mahatma Gandi


          " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
          Jane Siberry

          Comment


            Thanks for the hug song NL, I need that sweet silly guy with the sign to come over here.
            Obie, You have a knack of putting my feelings and situation into words. That was a good version of that song. I need some sun dammit. And I am not opposed to that pipe either!
            I have a SAD light and need to get it out. Did not need it last year, but a good reminder I might this year.

            Comment


              A very Happy Thanksgiving to all my old pipe-smoking friends, and to all the new 'faces' I see on board here!

              Linda, I hear the pain and can so relate to the feelings you have. Huggggss - just hugggs.
              _____________

              Comment


                Originally posted by marmalady View Post
                A very Happy Thanksgiving to all my old pipe-smoking friends, and to all the new 'faces' I see on board here!

                Linda, I hear the pain and can so relate to the feelings you have. Huggggss - just hugggs.
                Hey Marm~
                Huge hug to you as well!
                Every day I wake up is a good one

                Comment


                  Originally posted by marmalady View Post
                  A very Happy Thanksgiving to all my old pipe-smoking friends, and to all the new 'faces' I see on board here!
                  Love you, Jackie.

                  Comment


                    Happy Thanksgiving wishes to everyone. Good to 'see' you marm! and martha...wow!


                    ....and a Happy turkey Birthday to Deb (lilsis)! Hope you and Jim had a great feast and celebration!

                    Comment


                      Originally posted by chick View Post
                      Happy Thanksgiving wishes to everyone. Good to 'see' you marm! and martha...wow!


                      ....and a Happy turkey Birthday to Deb (lilsis)! Hope you and Jim had a great feast and celebration!
                      Where is L'sis?

                      FYI, everytime my boys get sick,and we are sitting up against the wall using the nebulizer, I come back to this online journal and how you all saved me that winter very long ago.

                      If my now teens knew "passing the pipe" started with their mom, they would be shocked!
                      Every day I wake up is a good one

                      Comment


                        It is sunny and my black gloom has departed. I don't know how many more of those I can survive!
                        Thanks for the words of encouragment.
                        My son was bringing an ourdoor penguin display down from the attic garage and it came apart and bonked me right on the forehead! Maybe it helped?

                        Comment


                          Hey! Good to hear from everyone:
                          Martha, Texas again? Pray tell, you tease. I miss your humorous stories and quick wit. And, of course, I'm sure we are all thinking of Dogger, he was such an integral part of the gang. After ten years, I can't even think what it would be like to not be a caregiver.
                          Obie, here we go again with another northern winter. If I remember correctly I passed you the pipe last, so you best find that sucker. How's Bill doing? I've kinda worried about you since you haven't been posting as much, but then none of us have been as prolific as days of old.
                          Jackie, I owe you a phone call but never sure bout the timing, we seem to operate on different schedules. Say hey to Matt and all the critters. I'm always forgeting to ask you which rules the roost, the Maine coon or the shepard?
                          Chick, thank you, OMG, I turned sixty this year, what a turkey. But we managed to party hard, starting with champagne, cake and good friends and ending with turkey, wine and pie. It will take time for a full recovery, find that pipe, Obie.
                          Kate, great job keeping us current on the conference, I trust you managed to grab a beer betwixt all that typing. Are you still empty-nesting? Cool car, by the way.
                          Bernadette, I noticed that you aare transitioning into a chair and bet you are missing Peter's advise dreadfully. Are you down to only one kid at home now? Still working where you used to?
                          Linda, hang in girl, when in doubt always sit, have a glass of wine and send your thoughts somewhere else for a while, or go shopping. This can be a very isolating life as a caregiver but it gets easier with time or with senility in my case. I'm sorry he is having pain, hopfully it's a transient thing. I'm itching to remodel something, that always gets me in my happy place, absolutely nothing like a little demo to get rid of frustrations! Debra

                          Comment


                            Bernadette, I noticed that you aare transitioning into a chair and bet you are missing Peter's advise dreadfully. Are you down to only one kid at home now? Still working where you used to?
                            Deb~ Still have 2 kids at home, the oldest is in his senior year and the youngest just started 6th grade (he missed a yr from the pulmonary issues).
                            Still at the same job and expect that I will be until the day I die---which seems like it will be sooner than later.

                            I now need a caregiver for a number of things (mostly safety issues) and it is not an easy transition. I got knocked with some non-sci neuro issues that are just not resolving. Reminded me that life is fragile and don't take anything for granted.

                            I miss Peter for a number of reasons, Deb--but not necessarily his advice, lol. He and I talked a lot about making the transition from walking to chair--I am glad we had that chat but do wish I could continue the talk. I do wish I had access to that sweet Aussie chair of his though and the ease of access to getting it.

                            Glad you dropped in. A very belated happy birthday!
                            Every day I wake up is a good one

                            Comment


                              Hi all,

                              I run a complementary, but not replacement, board for caregivers at another site. This board is private and invitation only; I am the moderator/owner of the board and I approve (or reject) all applications for membership. It is a much more honest and open place than this forum because out of necessity, this forum is geared towards those with SCI and it can be hard, even sometimes inappropriate to air caregiver woes here. I can imagine that it would be hard to read the problems and frustrations of us caregivers if one is in a chair. So, if you'd like to join us there, there are 15 of us currently, and all are carecure members (some active here, some not), please fill out the application form at this link - please read the information at the top of the page and be sure to include that information in your application.

                              Obie, I hope that you'll not delete this post because although it does advertise another site, it is NOT meant to replace this forum at all. I think that both my forum and this one are tremendously helpful and here especially I know that I really rely on the wisdom of those with SCI to help with my perspective and they often have great advice due to their own experiences being a recipient of care. My board is more for venting and discussing more personal needs very specific only to caregivers.

                              http://www.network54.com/Group/Apply?groupid=147940

                              Thanks!

                              Ami
                              Wife of Chad (C4/5 since 1988), mom of a great teenager

                              Comment


                                Hi Ami - Inviting carers to visit your site is perfectly fine with me - in fact I've directed people over to you myself .

                                I do take issue with your comments in reference to this forum being a place where we can't be as open and honest. The private Caregiver forum was created for exactly that reason but I still find most carers continue to share their feelings and ask questions here on the public forum. I like to think its because people feel safe here again and because maybe between Kate and I we've been able to cultivate and maintain a certain level of respect here. It's a good thing because when everyone is allowed the opportunity to become involved in the conversation it provides us the chance to see an issue from all sides - and that can be very enlightening for all of us. But - if someone ever needs a quiet place to go and release a serious rant or share a more intimate problem - the private forum is always available if that's their choice.

                                Caregiving is a unique place and seems to go through cycles where it will be somewhat silent for a period of time and then suddenly - becomes a beehive of activity - it mimics the ebb and flow of our lives I believe. Anyhow - I just wanted to take this as an opportunity to remind everyone we do have the Private Caregiving forum if ever there is a need and I wish you all the best with the continuation of your forum Ami - the way I see it the more options we have the better.

                                Obie
                                Last edited by Obieone; 28 Nov 2010, 8:54 AM.
                                ~ Be the change you wish to see in the world ~ Mahatma Gandi


                                " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
                                Jane Siberry

                                Comment

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