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  • It takes a village to manage sometimes

    I would like to know how you progress on your journey if you would care to share with me. You can post here, message me, or send friend request. We belong to an elite club, which no one wants to join 😔.

  • #2
    Hi...My name is Joany and my husband Dave just got diagnosed with Stage 3 kidney failure. He is a type 2 diabetic with high blood pressure and a heart problem. We are desperately looking for help to arrest any further kidney damage so hopefully he will not have to go on dialysis. We had our first meeting with a nephrologist, Dr. Fan, and also a dietician. We are finding the dietician recommendations really difficult and confusing. Wondering if you would know of a good renal dietician?
    Our journey is just beginning, but maybe we will learn something that will help others on their journey.


    • #3
      My name Allainyaha Charlene my dad waa diagnosed with renal faliure. Up until January of this year he worked part as a tax consultant. He and my mom are wheelchair bound do to their health isssues.

      I have been doing all the cooking, shopping, laundry, taking them too appts. My children help out when they can. My oldest takes them to appt on her day off. My son helps a lot round the house, and with my dad, getting him.up and dressed. The middle child helps with errands.

      It is tough my parents and i have never been close, we never made it to friends. They feel entitled to care, they see other families and make assumption as to what they are do as aging parents with health issues.

      Being a compliance officers i actually understand them. I guess it is nor there fault they have a,famous child ( joke).

      Anyway i am hoping to learn from other post, reading and sharing.


      • #4
        Ally, I know what it like to be were you are right now. I was one of two caregivers for my brother-in-law who never married and had no children. He had Medicare health insurance. He had a nurse come once a week, and nurse aid came twice a week to bath, dress and change his bed. I went though three social workers trying to find us more help. It always came down to one thing, hire someone to help, which we didn't have any money for. At first, Kroger store was a big help. I oredered the groceries online and my son watched his uncle while I picked up the groceries. In some areas they deliver. Later, Walmart and HBC started this service.

        At the last stages of Alzheimer's my brother-in-law had more help from Asana Hospice. He passed away this last July. After that I stared to pay attention to my own health. I have Chronic Kidney Disease Stage II which started last November.

        The best advise I can give you and your children is don't try to do it alone. Get more help and watch your health. Make your health a primary. If you get ill who will take care of your mother and father. Yes, it does take a village.


        • #5
          Hi Joann. I am new at this too. DaVita has thousands of recipes that can help. I know how confusing this diet can be. I found this website on DaVita last week that might help you.

          Since my printer is it working I shot a photo on my I phone. That way when I get confused or forget the do and don't it is always on hand.

          DaVita has so much information on the website it take weeks to read it all.


          • #6
            Do all of your parents with CKD require care to the point of needing cooking and cleaning done for them? I only expected that level of care in the weeks after transplant. If you have a moment and could take a look at my first post on this forum that I made today I would appreciate it. Do either of you belong to more active forums you might recommend?


            • #7
              Saracaregiver76, I also belong to __patient.info___ . nice and active forum.

              TO ALL OF YOU:

              when you board a plane the attendant gives instructions on how to use the oxygen masks, she also instructs the parents of young children that they are to put on their own masks before puting the masks on the children. The reason is clear, who will help those children get the masks on if the parent passes out! So people,please take care of yourselves FIRST so you are able to help others. Women especially concentrate on others first but there are times in life where it is not wise to do so. I like to wake up and take an hour for myself, it may work better for you in the evening, do what works for you. Take 4 hours for yourself on Saturdays while someone takes over for you, etc. I don't mean so you can do the grocery shopping, I mean go sit in the park or library and read, go to a movie, take a dip in a lake or pool, have à cup of coffee with a friend, etc. You make things happen for your patient so make this happen for yourselves. We are the glue that holds our families together but we need to be strong to do it. Can't be drained of all our energy, make time for you and you will be stronger for them.

              Put on your mask first.


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