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  • #31
    Re: New Caregiver looking for a Support Group

    Sockmonkey, First I want to welcome you to the forum and let you know your not alone with your feelings. A question for you--Did your husband have Acute Kidney Failure or undiagnosed Chronic Kidney Failure? With the Acute type your Dr. could not see this coming on. Chronic happens over a period of time. Annual physicals and blood tests would have shown a decline in kidney funtion. I know the adjustments in diet can be exhausting at first. But your efforts are paying off with the improvement in his labs. If your husband has not seen a renal dietician yet, its time to do so. This can really simplify your life. Has he started dialysis yet? Is his Neph. discussing all the options?

    Don't beat yourself up over his past lifestyle. Each one of us is responsible for our own decisions. Other caregivers will advise you to be there when needed, but the best thing you can do for the patient is to let them be as self sufficient as possible. If you start doing everything for him, he will lose himself along the way and you will as well. Come back to this site anytime and share, vent, and ask any questions you have. There are alot good people here who will be happy to help you in every way possible.

    Toni
    May you always have Love to share, Health to spare, and Friends that care


    Acute Kidney Function Loss 12/07 - GFR 39
    Current GFR 46 - Stage 3 - Controlled HBP

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    • #32
      Re: New Caregiver looking for a Support Group

      Tonia,

      Thank you for your reply. His kidney failure is chronic. His doctor first saw it in 2008 but said it turned around and that was that. The nephrologist said it is not uncommon for primary care physicians to miss it because they don't know what they are looking for. We met with the dietician yesterday. His insurance doesn't pay so it was completely out of pocket. She reassured me I was doing a good job and the recipes on this site are really great. I am a realist and my husband looks at everything through rose-colored glasses. Even after the neph. told him that he has 14% function, my husband thinks I can keep him off dialysis with my cooking. Talk about pressure!!!! I reminded him that dialysis was inevitable before a transplant would take place. I know it's hard for him. I really need help with letting go of full control and making him take on responsibility.

      Thanks again. I know I'll come back often.
      Sock Monkey

      Caregiver of husband 58
      Recently diagnosed
      CKD, Stage 5 predialysis
      Type 2 diabetes

      Comment


      • #33
        Re: New Caregiver looking for a Support Group

        Hi there Sockmonkey!

        Try not to take too much responsiblity on yourself! I know that is easier said than done because I would be "the pot calling the kettle black" if I didn't tell you that I am an absolute control freak.

        There have been so many times that I just wanted to throw an old fashioned 2 year old worthy tantrum in the middle of the floor. I have at least gotten to the point (after 2 years of the rollercoaster ride) that I will flat out tell my husband that I am going to be a baby for a little while and he can just get over it. I don't do it very often but like your husband mine sees things in a more positive light more often than I do. I guess it is probably a little easier for him to do so because I try to handle as much of the "hard" stuff as I can so that he can work full time and come home feeling miserable and chill in the chair in the living room. Most of the time I honestly don't mind because to me it is more important for him to work so that he feels better about himself. Maybe I am old-fashioned but I believe a man needs to feel like he is providing - how could he do that if he quit working so that he could stay home all day and feel sorry for himself? What makes it all worth it for real is knowing that my DH feels so much better because he doesn't have to stress over all the details because he knows that I will take care of things (he had no support with either of his previous transplants - part of why I feel so compelled to do more than necessary). I am realizing though from things I have learned here that especially when dialysis starts he is going to have to take on some of the responsibility for himself. In all honesty, I think that would make him happier anyway.

        I have been able to let go of a lot of the anger and resentment that I used to feel. I won't lie and say that it doesn't still creep in from time to time but for the most part I have come to a place of acceptance about the whole thing. The hard part is the not knowing when his kidney is finally going to give up, what happens next, how hard is home hemo going to be on each of us, how is it going to affect our family, where and how will we store all of the supplies - that kind of stuff.

        I just want to encourage you to stay strong and try not to let the little things get to you.
        Holly
        Caregiver for husband 45
        Stage 5 CKD / Non-diabetic
        2 Previous Transplants in 1980 and 1988

        Comment


        • #34
          Re: Wife to new HD patient looking for a Support Group

          Originally posted by PurpleDivaNJ View Post
          Hi all!!

          Here's my "Reader's Digest" story... My husband recently started Hemodialysis. He has Type I Diabetes and Hypertension (that was not controlled). His kidneys rapidly deteriorated, and his doctor admitted him to the hospital (right after the Memorial Day weekend) for a catheter placement and "emergency dialysis".

          He had an AV graft done.

          He will be doing HD at Davita on Monday, Wednesday, and Friday.

          I am completely overwhelmed and exhausted. I am scared, and I am unsure of what our future holds.

          I am looking for a support group in my area that I can attend to learn, discuss, vent, and meet others in the same boat.

          I live in Central New Jersey. Is anyone aware of such a group? Or do Davita Centers offer Caregiver Support Groups?

          thanks...
          B.
          Hi PurpleDivaNJ. When I read your post it was like mirroring my own situation with my husband. He is a Type 1 diabetic with blood pressure issues also. We are going from a Tues, Thurs, Sat schedule to a Mon, Wed, Friday schedule through Davita. He started on PD in 2010 and switched over to Hemodialysis in August 2011 because the PD was just not working. I am very scared at what the future holds also.

          I hope you found a support group in your area. I'm not so lucky. Where I am living the closest support group is 20 miles away. I am finding alot of information and support via facebook and now since I found this forum.
          Philippians 4:13
          (KJV)
          I can do all things through Christ which strengtheneth me.


          Diagnosed with ESRD 2010
          Sept 2010 to July 2011 Home PD
          August 2011 PD Cath. removed - Peritonitis
          August 2011 (November 2011 Fistula placed - waiting for it to mature) to Present In-center Hemo dialysis through chest access.

          Comment


          • #35
            Re: New Caregiver looking for a Support Group

            Originally posted by DevonTexas View Post
            Hey there Bajanne! Nice to see you. However, I can't recommend the website IHateDialysis.com. It's not a very friendly place. You are the exception, of course. But the moderators are a pretty rough bunch. If they don't agree with your point of view, they kick you off. They are the antithesis of the founder of the website who wanted to create a place where freedom of expression is the watch-word. Again, nice to see you but I would warn people about that site. It gets very unpleasant. Not worth it.
            Devon,

            Along with the DaVita Forum and IHD, Have you tried the NxStageUsers Forum or HomeDialysisCenter.org?
            ______________________________
            PD - 13 Years
            3 Transplants
            In-Center Hemo - 6 Months
            NxStage - Since April - 06
            Facebook: Dialysis Discussion Uncensored

            ________________________________

            Comment


            • #36
              Re: New Caregiver looking for a Support Group

              Originally posted by Sockmonkey View Post
              Tonia,

              Thank you for your reply. His kidney failure is chronic. His doctor first saw it in 2008 but said it turned around and that was that. The nephrologist said it is not uncommon for primary care physicians to miss it because they don't know what they are looking for. We met with the dietician yesterday. His insurance doesn't pay so it was completely out of pocket. She reassured me I was doing a good job and the recipes on this site are really great. I am a realist and my husband looks at everything through rose-colored glasses. Even after the neph. told him that he has 14% function, my husband thinks I can keep him off dialysis with my cooking. Talk about pressure!!!! I reminded him that dialysis was inevitable before a transplant would take place. I know it's hard for him. I really need help with letting go of full control and making him take on responsibility.

              Thanks again. I know I'll come back often.
              Fresh home cpooked foods with NO salt kept me off dialysis also no alchohol. Kidney failure started back in 1980@s only started dialysis Sept 2010 but was in hospital over xmas and had no dialysis due to my lkeg graft being blocked the checked out by consultant who had take me OFF dialysis UFN as everything is stable. I feel no different in any way just have lots more spare time.
              Audrey
              Kidney problems starrted 1980's when I had Saracoidosis
              Recenty started HD at my local renal u Init in Telford.Still having a few problems with my 2nd line.

              Comment


              • #37
                Re: New Caregiver looking for a Support Group

                I wouldn't be surprised if this message is removed but good luck with Davita "support" groups. We live in the huge city of Dallas and there are no support groups. Furthermore, the doc who "promised" to get back to me regarding "support" groups never did. I'm sure that's because there are none, and she didn't have the courtesy to let me know and try to do something about it. Additionally, I don't know if it's just me but I also find this website extremely user-unfriendly.

                Comment


                • #38
                  Hi my name is Erika and I was isaac caregive for a long time and now he has passed away and its so hard to deal with it I miss hi so much please I need help asap I don't know why everything happened the way it did but I hate the his family has been with me they were never there to help me with with anything and they are so cruel to me i took care of there son by choice not cause I had to because I love him I stop school they came around at all when he was sick but now he gone they ack like they been there and they haven't they don't even know what he can eat or take time out to find out or go see him in hospital when we were there gor 45days never came around at all and now he gone they want to ack has if they took care of him and just leave me out of everything its far
                  Last edited by Isaac07; 09-06-2021, 06:37 PM.

                  Comment