Announcement

Collapse
No announcement yet.

caregiver rant! Bear with me

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    caregiver rant! Bear with me

    I just need to vent a moment. There are no solutions to this, so all I can do is rant. We are TOO POOR to afford the treatment Gary needs. He has had Devic's / NMO for a wonderful 25+ years. Misdiagnosised, of course for much of that time, so he could get REALLY disabled. blind in one eye and can't see much out of the other. Just like the old saying. He walks on a cane and hasn't peed on his own for 4 years. Can do some for himself, and I do the rest. I do all the bill paying, money begging...I cook, I clean (very little) and I run my own business because Medicare and SS Disability doesn't render enough. I love him dearly and have always supported him. Will continue to do so. Too broke to hire anybody to help and not sure he would allow it anyway. Dang Pride! I guess I have it too though. I get tired of reading the "caregiver suggestions" of just get away for a while. Ha! I can't leave him for over a few hours and when I do, something usually goes wrong and then the guilt pours over me. Somedays, I feel that my nerves are all gathered on the edge of a tall skyscraper and are in the "jump" position. And sometimes they do! LOL Now there is a treatment for his bladder to possibly / probably fix it. I could then at least spend 1 night away somewhere. We are broke, did I mention that? Medicare doesn't cover experimental and there are no studies in podunk Mississippi. And yes I grew up here and love it 99% of the time. Gary can't travel. It is too wearing on his system so we will sit here until those big FAT men and women in Washington can NOT do anything for Medicare. Everyone of them should live on SS disability and get OUR cost of living raise and throw a few medical bills in there so they will have something to do with all that money! As I said, it is just a rant and can't no one do anything about it. I'll just quietly sit back now. thanks for hearing me out.

    #2
    Feel free to write more.

    Comment


      #3
      Amelia

      Exactly what help does he need? How does he manage his bladder? What goes wrong when you leave him on his own?
      C5/6 incomplete

      "I assume you all have guns and crack....."

      Comment


        #4
        He has a spastic spinchter ( however you spell it ) due to spinal damage by NMO. He knows that he has to go, knows how much, but when it comes time, occasionally, the muscle will let a very small amount out and then it shuts it off. I have to cath him and I don't leave him. The longest amount of time is on Sunday nights when I go to 2 hours worth of programs. Our house is stone throwing distance from the church. Obviously, if I don't cath him eventually, he would pop. we are wanting to get Botox to help with this problem. From all that I have read on the studies it would work. There are more permanent methods, but would rather stay away from them right now.

        Comment


          #5
          Amelia

          I understand he has eyesight problems. How is his sensation and hand function? Can he cath himself?
          C5/6 incomplete

          "I assume you all have guns and crack....."

          Comment


            #6
            yes, why cant he cath himself? I do it by feel being a girl, you cant see what you are doing down there. after a few times,it is just routine, not a big deal. he should try in case you are late getting home for whatever reason. how about a condom catheter with a leg or hip bag? not hard to empty. unless his hands do not work, he should have no trouble emptying a leg bag, and may come to like doing that for himself. awesome you have your own business.

            Comment


              #7
              Hi Amelia

              What about a condom cath and leg bag? I'm sorry you seem to be in this no win situation. It's essential you take time for yourself ..... what would happen to him if you got sick or anything at all that prevented you from assisting him. Even if you never go just the knowing you could would relieve some of the stress you feel.

              You've taken the first step to a solution by posting and venting ...... keep talking .... we'll help you any way we can!

              Obieone
              ~ 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


                #8
                you don't understand, no condom cath, the pee won't come out, must be cathed. Doesn't do well with a foley and leg bag. He tries to stay as active as possible and the foley gets in the way. We did do the leg bag when we went to SC to see our daughter a few years back. He had an attack because of it. He has little dexterity in his hands. He has been paralyzed from neck down in the past numerous times. No, he has to rely on me. He cannot take care of himself in many ways

                Comment


                  #9
                  Okay I understand Amelia ...... here are some links you might find helpful :

                  /forum/showthread.php?t=68955
                  /forum/showthread.php?t=3691
                  http:///forum/showthread.php?t=11309...der+management

                  All the best.

                  Obieone
                  ~ 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


                    #10
                    12345
                    Last edited by linerd27; 27 Jan 2009, 7:21 PM.

                    Comment


                      #11
                      thanks. today is a better day although it started out ify. Medicare part d wanted authorization for the IV solumedrol Gary was to get 2 days ago. His disease is abosolutely necessary to get the steroids ASAP. Medicare doesn't see this. Maybe they were scared we were going to sell it on the street corner or something.LOL

                      Comment


                        #12
                        Where in Miss are you? You can PM me. I have family possibly near you and also know a few resources.
                        If you can't handle me at my worst, then you sure as hell don't deserve me at my best.


                        Sometimes it is easier to widen doors than it is to open minds.

                        Comment

                        Working...
                        X