7 Year Anniversary for My Wife

    • Anonymous
      June 24, 2007 at 11:45 pm

      Well earlier this month it marked 7 yrs since my wife came down with GBS. This has been a very trying yr for her, Back in November she got sick & had to go back in the hospital. The problem was a Urinary Tract Infection that got out of control, I took her to one hospital the first time. All they did was give her an IV & said she was dehydrated & sent her home. Well a wk later I had to take her back to the hospital, this time they detected the UTI. They gave her an IV again & they also added infection medicine, then they sent her back home.

      Well she was a little better for a few days, but everything started all over again. So a few days later I took her to a different hospital this one belonged to the same company. But there was no comparison when it came to medical care in the ER. Oh & this hospital was the one that originally found the GBS back in June 2000, they ran test after test on her including a spinal tap. As to which she had gotten to the point where she couldn’t walk, or get up by her self. They found the same UTI that she still had, they gave her IVs & several types of infection meds. They also admitted her to the hospital for a few days, the UTI was causing her all kinds of problems. Including hallucinations but after 4 days she started getting back to more normal. So they released her & they gave her an rx for an infection med. So she came home & was doing ok for a short while, then it came back. Along with the hallucinations, so I took her back to the hospital because she still couldn’t walk along with the UTI.

      That just didn’t want to go away, well they did another spinal tap checking to see if the GBS was coming back. They did a massive battery of tests on her & they admitted her to the hospital again, she had developed adrenal gland problems, as well as thyroid gland problems. Something else that was picked up was a blood clot in her left leg. They started treating her for these problems & they also did plasma pherisis. She was in the hospital for 7 days & she still had problems in getting up, so she was sent to a rehab center for 10 days. They got her where she could get up & she seemed to be doing a lot better, Well that wasn’t the end of her problems she still had problems getting up & walking.

      So back in March she was admitted to a skilled nursing care center for more rehabilitative therapy. This time it worked they got her back on her feet & able to walk. She came home after about 14 days this time everything is going a lot better. She is doing ok but she still suffers from chronic nerve pain in her legs, that is one thing that will never go away. She can walk for short distances but she her legs still give out on her very quickly. But at least she hasn’t had to go back to the hospital & that’s a big plus. What made her situation so bad was not only having GBS but the onslaught of CIDP, she has had an uphill battle for the last 7 yrs but somehow she has managed to survive. As for me I’ve been taking care of her for the last 7 yrs & I’ve learned quite a few things. One of them was how to replace her GTube she uses to take her meds through & she also is on tube feedings. With a high protein nutrition supplement this is one of the things that is keeping her going. But take my word for it taking care of someone that is disabled can be a challenge.

    • Anonymous
      June 25, 2007 at 2:34 pm

      Dustdemon,

      Bless you! Your wife is the luckiest in the world to have you. When you describe what all she has been through – that also counts for what you have been through. I’m glad to hear that she is finally going in the right direction! I hope you both can get some rest and enjoy life a bit more 🙂

    • Anonymous
      June 27, 2007 at 12:16 pm

      [B]Terry,

      Enough cannot be said about your love for your wife and how well you take care of her. We as care givers do it for the love. It’s always about the love.I know I sound like a broken record because everytime the subject of caregivers comes up, I write the same words. But it’s all true my friend, we have talked about this Terry.

      Your wife’s ability to strive for the next step forward is also because you take those steps with her. She loves you for being there for her.

      So Big Hugs All around.[/B]

    • Anonymous
      July 1, 2007 at 9:21 pm

      [quote=dustdemon 1]As for me I’ve been taking care of her for the last 7 yrs & I’ve learned quite a few things. But take my word for it taking care of someone that is disabled can be a challenge.[/quote]

      [B]Have you ever thought about seeking out a support group for people taking care of their disabled spouses?[/B]

      A lot of times friends and family only tend to focus on the person suffering from the disease and don’t think about the stress and strain that the spouse is dealing with. Not only are you taking on more physical jobs but you’re also dealing with [B]a loss[/B]. It’s the same as going through the stages of grief, because [I]you’re[/I] experiencing a loss as well as the person dealing with the disease.

      I’m sure y’all had plans for the future and enjoyed activities together that are now impossible. You’ve lost a big chunk of what you thought was in your future and it feels like you’ve lost a part of the spouse you married. It’s all so different, it’s almost like getting married to a different person! I bet your goals now are completely different than they were 7 years ago. 😎

      My husband and I had a few [B][I]rough[/I][/B] patches and we are very lucky to have been able to work through them. I know, though, how a severe disability can totally throw a marriage out of whack.

      [U]Healthy spouses can suffer a lot of guilt[/U]: guilt over being healthy and being able to do things that the other cannot; guilt over wishing you could just get away from it all; guilt at the relief you feel when you do finally get a break; guilt over being called a saint by others for helping her like you do, when you really don’t feel all that saintly; guilt over feeling these things internally and believing you are a bad person for even thinking about them.

      You just sound so worn down. 🙁 I think a group like that would be really good for you. But that’s just MHO and you may feel free to tell me to mind my own business! I just detected such a sadness in your post and felt compelled to reach out to you.

      🙂