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  • Need Support - Just found this site!!

    Hi everyone - I am a caregiver to my Mom who is 83. She has lived with me for the past 16 years and the last two have been rough. She has atrial fibrilation, renal failure and end of last year had a GI bleed which required 6 times in hospital for transfusions in just a matter of 2 months. Her creatinine is now at 5.2 and she will not do dialysis. She is now staying in bed 90% of the time, loosing appetite and sometimes confused. From what I can gather she is at end stage renal failure. Oh, and the Drs feel she probably just had another TIA. I don't know what to expect. I just found this website and reading all the posts is very scary - sounds like she probably made the right decision about dialysis as she has so many other problems. I worry about her most the time and always checking to make sure she is still breathing!! Does anyone know what to expect from here?

  • #2
    Originally posted by pamoniz
    Hi everyone - I am a caregiver to my Mom who is 83. She has lived with me for the past 16 years and the last two have been rough. She has atrial fibrilation, renal failure and end of last year had a GI bleed which required 6 times in hospital for transfusions in just a matter of 2 months. Her creatinine is now at 5.2 and she will not do dialysis. She is now staying in bed 90% of the time, loosing appetite and sometimes confused. From what I can gather she is at end stage renal failure. Oh, and the Drs feel she probably just had another TIA. I don't know what to expect. I just found this website and reading all the posts is very scary - sounds like she probably made the right decision about dialysis as she has so many other problems. I worry about her most the time and always checking to make sure she is still breathing!! Does anyone know what to expect from here?
    Contact Hospice immediately!!! They were wonderful for my entire family when my brother was dying from renal cell carcinoma. They can make your Mom more comfortable and help you deal with her care as well.

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    • #3
      Thank You for your reply!

      We now have hospice coming and yes they are wonderful!! It really helps me with who to call and what to do!! This has to be the hardest thing I have done in my life - everyday I feel as though I am just waiting for Mom to die and is this the day. It is a dreadful feeling - the past two weeks I have cried every day. I am getting a "grip" now as I know I have to be strong to help Mom. Again thanks for your words of encouragement!!!

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      • #4
        Originally posted by pamoniz
        We now have hospice coming and yes they are wonderful!! It really helps me with who to call and what to do!! This has to be the hardest thing I have done in my life - everyday I feel as though I am just waiting for Mom to die and is this the day. It is a dreadful feeling - the past two weeks I have cried every day. I am getting a "grip" now as I know I have to be strong to help Mom. Again thanks for your words of encouragement!!!
        You are most welcome and I'm glad you now have help. I can't imagine how difficult it must be for you. Be sure to let hospice know everything you need.

        Lorelle

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        • #5
          Hi,
          i m s`rry to know about ur mother state but if her GFR falls less then 5ml/min then u have to start dialysis other wise she will suffer from uremic encephalopathy which is fatal in nature.
          u can go for CAPD or APD dialysis.

          Originally posted by pamoniz
          Hi everyone - I am a caregiver to my Mom who is 83. She has lived with me for the past 16 years and the last two have been rough. She has atrial fibrilation, renal failure and end of last year had a GI bleed which required 6 times in hospital for transfusions in just a matter of 2 months. Her creatinine is now at 5.2 and she will not do dialysis. She is now staying in bed 90% of the time, loosing appetite and sometimes confused. From what I can gather she is at end stage renal failure. Oh, and the Drs feel she probably just had another TIA. I don't know what to expect. I just found this website and reading all the posts is very scary - sounds like she probably made the right decision about dialysis as she has so many other problems. I worry about her most the time and always checking to make sure she is still breathing!! Does anyone know what to expect from here?

          Comment


          • #6
            Originally posted by pamoniz View Post
            We now have hospice coming and yes they are wonderful!! It really helps me with who to call and what to do!! This has to be the hardest thing I have done in my life - everyday I feel as though I am just waiting for Mom to die and is this the day. It is a dreadful feeling - the past two weeks I have cried every day. I am getting a "grip" now as I know I have to be strong to help Mom. Again thanks for your words of encouragement!!!
            My father also refused dialysis. We had hospice coming twice a week which really brought his spirits up. As time went on, he too lost his appetite. Keep your mother happy, love her with all your heart, and pray. We did all we could to keep him happy while he lived with us the last few years. I hope we did enough. After about a year, he just gave up. He was 87 and spent his last few hours talking to our daughter about his family, life, and how he was ready to join his wife. He passed in his sleep later that night. Please love your mother and treat her as if everyday may be her last. My God bless you for everything you do for her.

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            • #7
              Sorry.....

              For what you are having to go thru right now.

              I lost both of my parents and were there with them both to the very end. It meant a lot to me to see them off on their next journey.

              Hospice was a great help not only to them but to my in helping me keep an even keel. I'm not an only child but I was the one that had to step up and be sure all the arrangements were in place in time. Hospice freed me up to tie off loose ends.

              Your parent always seems to know when there is no point in fighting on. I found that feeling sorry was a bit on the selfish side for they had their mind made up and to move on was what they wanted.

              Be tough, you WILL get thru this then you will enjoy the memories. I still talk to Mom and Dad in my dreams.

              I'm not a spiritual person but someone or something gets us thru it O.K.
              " GO AHEAD, MAKE MY DAY"-Dirty Harry

              (fspencer@bak.rr.com)

              Comment


              • #8
                Need Support Just found this site

                Glad you found the forum here. So many helpful individuals frequenting this site. So sorry that you had to look for us. My Dad had PSP. JUst wanted you to know that we are all here to help one another if we can
                Bonkers
                _

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                • #9
                  hi my name is rufus c patterson jr and i have chronic kidney disease stage 5 i know its gonna get worser than this i go to dialysis 3 times a week its scary but i am getting ues to it now i have to focus on getting a permanent ride where i can get to the pd appointment iam 45 yrs ols and has a fiance who is 34 yrs old i cant leave this earth leaving her all by her self i know she will miss be be heart broken my family and associates will to maybe my kids they never knew me so why even bother i took care of them when they was small but they dont know me like that

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                  • #10
                    Have you considered sound pd dialysis at home rather than going to a dialysis center

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                    • #11
                      U R young. It hit me when I was 50. I did PD for 3 1/2 years, had a transplant for 14 years, and am now on hemo 3 days a week. It has sometimes been rough but I won't give up. I am still having a wonderful life and have a wonderful wife. I am on the list for another transplant. I am now 67. Don't give up...hang in there. You can do it. If you can, see about getting a transplant. It's worth the risk. And also, if that girl will have you, marry her now! Why wait?

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                      • #12
                        WHY THE CENTER DOES NOT WANT US TO START A SUPPORT GROUP. I ASK IT WAS LIKE IS BAD TO TALK TO OTHER PATIENTS. I FEEL LIKE IT HELP A LOT OF PEOPLE. WITH OUT DOCTORS OR ANY ONE FROM THE CENTER.

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