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  • New Caregiver looking for a Support Group

    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.

  • #2
    Re: New Caregiver looking for a Support Group

    Hello PurpleDivaNJ,

    Welcome...this is such a great site. The people on here are wonderful and really care about each other. You will find a mix of both patient and caregivers on this forum.....we're all in this together!

    A very loved mentor of ours, who just recently passed away always instructed new comers to log on to www.kidneyschool.org. There is a lot of good information on there. Some other good websites are the American Association of Kidney Patients (AAKP) and the National Kidney Foundation. You are always free to come here and ask any question, vent, cry, etc. By the way, I used to live in New Jersey and spent many summers down the shore. Next time I come home to visit, I'll have to look you up.
    ~ddarling~

    Comment


    • #3
      Re: New Caregiver looking for a Support Group

      Hi PurpleDivaNJ,

      Sounds like you and your husband have been through a lot. Like Debbie said you have found your support group. Malibu is a caregiver and is always posting. I myself am a CKD patient. We all learn together on this forum, us patients are always looking to the caregivers on this forum for advice and guidance, because caregivers have a very different perspective from the patient.

      You certainly can contact the closest DaVita Center in your area and ask the social worker on staff if there is a support group. The Davita center in my area has a conference room as part of the center, maybe the one in your area as a similar set up where you can grassroot a support group using the center's conference room, just in case there is not one set up. Just an idea.

      On the 'find a dialysis center' portion of this website there is a phone number : 1-800-244-0680 to reach a Guest Services Contact person, just in case you want to call and make some inquiries.

      We would really like it if you joined us on the forum as a caregiver, we are a great group here and there is always room for more in our family of caregivers and patients!

      Comment


      • #4
        Re: New Caregiver looking for a Support Group

        Hello PurpleDivaNJ. Interesting name. I am also a newcomer to this site and when I read your post I almost cried for you. I remember well the first time I walked into a dialysis center with my husband. It happened in November 2007 and his renal failure was totally a surprise to us also. I was overwhelmed with all of the technical terminology that everyone else seemed to understand except me. The other caregivers in the waiting room were friendly and after sitting there listening to them chat about dialysis and all of the stuff that goes along with it for an hour, I just broke down and cried.

        One lady came to me and put her arms around me and let me cry. Afterwards she told me that she had only been a caregiver for a few months and had to learn the same way I did. Unless the patient has been a CKD patient for a while, the education comes fast and furious. She became a close friend and we learned together. When her husband started on PD, so did mine.

        You will develop friendships through your dialysis center as well as the folks on this site. Keep your chin up and learn all you can to help your husband and yourself through this. After a month or so, you'll be an "old hand" at it. I'll be pulling for you!
        "Life isn't about waiting for the storm to pass...
        It's about learning to dance in the rain. "

        Comment


        • #5
          Re: Wife to new HD patient looking for a Support Group

          Welcome PurpleDivaNJ (now that's a mouthful). You have found a wonderful place that I think of as an oasis in the desert of CKD. I joined just a few weeks ago. I spent hours reading the posts, and with each one I read I felt less alone and more hopeful. I was confused and depressed when I first heard I had kidney disease. I am lucky that I am stage 3 and still have time to work to keep as much kidney function as I can. The people here are so caring and helping. Please join us....we all want to share and help. Good luck!

          Comment


          • #6
            Re: New Caregiver looking for a Support Group

            I did a search for support groups in NJ but couldn't really find anything but thought I would share anyway:

            http://www.dssgnj.org/

            http://www.inspire.com/groups/nephsp...-north-jersey/

            http://www.fscnj.org/

            http://www.nj.gov/caregivernj/resources/support.shtml

            Also .. don't know if any of this helps:

            Renal Transplant and Dialysis Support Groups and Programs The Renal Transplant Center offers a variety of programs to address the healthcare education and patient support needs of dialysis and transplant patients. Please call for further information or click on Support Programs.
            • American Association of Kidney Patients (AAKP), (732) 382-1092
            • New Jersey Transplant Association, (908) 647-6119
            • Pre-dialysis Patient Education, (973) 322-7157
            • Pre-transplant Education Seminars, (973) 322-5938 or
              (973) 926-7555
            • Renal Support Group, (973) 322-2750
            • Transplant Recipient and Family Support Group, (973) 322-2204 or (973) 926-3537

            Also remember..

            Accept your own limits. As a caregiver, you don’t have to do it all, and you shouldn’t try. Accept that there are limits to what you can do as a caregiver. Admit when you feel overwhelmed, and ask for help.

            Schedule time for yourself. Don't forget to schedule time for activities you enjoy. There are more important things than doing the laundry, and caregiver support is one of them.
            Remember, this is about staying healthy in mind and body, so you need to make time to have fun now and then.


            Take a break. At least once or twice each week, stop being a caregiver for awhile and take some time for yourself. If you do, you'll be happier and better able to care for your loved one.


            http://seniorliving.about.com/od/hea...egivertips.htm
            Angie
            Kidney KornerDialysis Ethics Forum Kidney PixAwareness Shirts KidneySpace Donor Search
            I will be walking a Kidney Walk in Ontario Canada Sept 18th 2011
            • Peritoneal Dialysis = 4 yrs
            • Hemo Dialysis (in center) = 2 yrs
            • 2 kidney transplants = 1990 - 2001 & 2007 to present

            Comment


            • #7
              Re: New Caregiver looking for a Support Group

              Welcome to this site. I also am a caregiver to my father and really don't know what I would do without this site. Everyone is truely a family here. I live in upstate NY so I am not to familiar with any support groups in N.J. This place is a Godsend! If you ever need to talk this is a wonderful place to come.

              Comment


              • #8
                Re: New Caregiver looking for a Support Group

                There are many support groups out there for both the patient and caregiver.
                Here are 3 that I know of that are very good. The people are very knowledeable.

                1. http://www.nxstageusers.com
                2. http://www.nxstageusers.com/forum
                3. http://www.homedialysis.org
                4. http://www.kidneykorner.com

                Check them all out, join them all. They have all helped me.

                HD
                __________________________
                www.nxstageusers.com

                Comment


                • #9
                  Re: New Caregiver looking for a Support Group

                  Hi; I am new to the Support Group and not even sure that I am doing it right! I have been reading all the caregiver support threads that I can. You all have inspired me to keep the faith and hope. My husband and I were diagnosed a day apart; him with Kidney failure and me with Stage 4 of Renal Cancer (Kidney) about 3 yrs ago (I am in remission right now). We both have been caregiving for each other since then. His tantrums and grouchiness have been intolerable for me lately. We have been married for 40 years and do love each other very much. I try to understand that it is his illness that makes him so grouchy and unpredictable, but his words hurt so much and I get so depressed. Then we make up talk about it and face the fact that we are both very ill and at least still have each other and we need to try and make the best of things. I would like to be a member of this support group to help me get through the rough times. Thanks very much, piggy:

                  Comment


                  • #10
                    Re: New Caregiver looking for a Support Group

                    Weclome, Piggy!


                    This is the place to be for support!

                    If I were you, I would search the old talk topics for things you are interested in. Then, post there if you have a question.

                    There are som many great people here, and with so much experience.

                    Again, welcome, and hope to see you back on the boards soon.
                    Diagnosed Stage 2 CKD (lupus) 1985
                    PD March 2009-present
                    On Transplant List
                    Husband is a match (undecided about that for now)

                    Comment


                    • #11
                      Re: New Caregiver looking for a Support Group

                      Thanks Annie for responding to my post. After I vented I have decided to pick myself up and stop feeling sorry for our situation. My husband is sick and so am I; I forgot to mention that I get flare ups of fibromyalgia and depression. This forum is a great help. I know now that we are not alone and can continue coming to this site for your help and support. piggy

                      Comment


                      • #12
                        Re: New Caregiver looking for a Support Group

                        Well, it is great to have you here, Piggy!

                        Feeling sorry or bummed out happens from time to time. I think it is perfectly natural. The trick is to not let it become a constant feeling.

                        Whenever I start to feel that way, I turn on Discovery Health channel and watch one of the many shows about people with really odd/serious medical conditions.

                        Have you seen the Treeman? Wow. I watch just about 20 seconds of that man, and I snap right out of it

                        Have you and your husband thought about in-person support groups or counseling? Those could be great, particularly because you are both dealing with a lot of medical problems. Ask the social worker or nurse at your doctor's office. They may information about that sort of thing.

                        Also, the information line at most hospitals will connect you to people who can tell you what different groups are running at the hospital.




                        Good luck, and see you around.

                        A
                        Diagnosed Stage 2 CKD (lupus) 1985
                        PD March 2009-present
                        On Transplant List
                        Husband is a match (undecided about that for now)

                        Comment


                        • #13
                          Re: New Caregiver looking for a Support Group

                          Originally posted by annie View Post
                          Well, it is great to have you here, Piggy!

                          Feeling sorry or bummed out happens from time to time. I think it is perfectly natural. The trick is to not let it become a constant feeling.

                          Whenever I start to feel that way, I turn on Discovery Health channel and watch one of the many shows about people with really odd/serious medical conditions.

                          Have you seen the Treeman? Wow. I watch just about 20 seconds of that man, and I snap right out of it


                          I am Brand spankin new here, but I just had to jump in on this one I just read. I too go to Discovery Health when I need to "Snap out of it" I actually do have a Rare Medical Condition which lead me to my CKD....so it all interests me.. It is so much easier to deflect the issue, if you have been depressed....kind of lifts that proverbial "Monkey on your back" I try to take myself out of the equation when looking at these other illnesses, or even looking at myself clinically rather than personally.

                          I too get worn out or that hopeless feeling that can sneak up and consume you. I get it alot, especially when life throws more at you. This gets old after awhile, but we just keep going and going and going. There is no other choice is there?

                          I'm so glad I stumbled upon this site. I never knew there were any discussions at all. I am also on another forum, but it deals with the disease I have, not necessarily the Kidney Failure. Thanks to everyone for coming together here and offering support, ideas, or in need of support..

                          Comment


                          • #14
                            Re: New Caregiver looking for a Support Group

                            Originally posted by annie View Post
                            Well, it is great to have you here, Piggy!

                            Feeling sorry or bummed out happens from time to time. I think it is perfectly natural. The trick is to not let it become a constant feeling.

                            Whenever I start to feel that way, I turn on Discovery Health channel and watch one of the many shows about people with really odd/serious medical conditions.

                            Have you seen the Treeman? Wow. I watch just about 20 seconds of that man, and I snap right out of it

                            Have you and your husband thought about in-person support groups or counseling? Those could be great, particularly because you are both dealing with a lot of medical problems. Ask the social worker or nurse at your doctor's office. They may information about that sort of thing.

                            Also, the information line at most hospitals will connect you to people who can tell you what different groups are running at the hospital.




                            Good luck, and see you around.

                            A
                            Annie, I just want to say that I joined this site a few days ago. I have read many of your posts, and I think you are an awesome person!!!

                            I was just about to fall apart, when I remembered searching the Davita site for info on peritoneal for my husband, and I saw these threads... but didn't really need them then.

                            Now I do. And I thank God for you Annie.

                            I felt so ashamed and guilty at times, and I was about to loose it. Since I read yours and others threads, I now know feeling ashamed and guilty for being (tied down to a sick spouse/loved one) is normal. And I know "Love Conquors All.... with patience and understanding".... THANK YOU ANNIE.

                            Comment


                            • #15
                              Re: New Caregiver looking for a Support Group

                              I am a brand new member of this site. I am a little confused at how all the threads and sections work but will be sorting it out tomorrow since it is 3am here. My husband was told back in 2006 that he had abnormalities on his blood testing as he exited the Army ... with further testing we were told that everything appeared to have just been a "fluke" and he was ok. Again in 2007 he had testing come back abnormal and was told he was in Renal Failure ... his insurance at his job dropped him immediately and it took apprx 2 months to get in to see another doctor. When they ran their testing everything came back ok. We figured all was going good, no bad symptoms, nothing. He applied for VA benefits in May of 2009 and had the first appt with his regular doctor the month following. His testing came back abnormal again and he was told again that he was in Renal Failure. His egfr level was at a 28.4 and they referred him to a specialist. We had multiple appts and thankfully within a year his levels decreased slowly ... from 28.4 to 22.0 - On April 27th his doctor decided to put him on protein blockers since he is leaking a large amt of protein into his blood system ... well from April 27 til June 18th his levels decreased from 22 to 15 ... got an emergency call from his doctor to quit taking the pills since she is worried they caused the rapid decrease, along with a consult to have the shunt placed in his arm, and another appt with her 5 days from now.

                              I am completely baffled by all of this. I am at a loss for what to do. Things at home have been stressful and our 2 young children just dont understand why daddy is sick. No one that I am around seems to know or understand how I feel or are able to answer any questions I may have. Financial issues are about ready to strangle me ... we are having to travel either 2 hr round trip for his regular doctor or 6 hr round trip for his kidney doctor (due to having to go to VA facilities).

                              I am hoping and praying that at least maybe someone on here will understand ....
                              ~Angel~

                              When life knocks you to your knees, your in the perfect position to pray

                              Comment