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  • hi everyone

    my mom started dialysis in dec 06, she has had numerous surgeries and/or procedures.
    at first my brother and i took turns staying with her while my dad worked.
    you see, i am a nurse aid and my brother is disabled.
    when mom was first told about kidney disease, she didnt understand at all. she missed her med.s and such. (not Good)......
    well in jan. i got in home help- cause i was on the verge of losing my job and got evited from our house, cause i couldnt make rent.i was helping mom and dad by moms medication. so we got her signed up for medical insurance (medicaid and medicare) since they qualified. i have a gal there 5 days a week and that helps. and a visiting nurse once a month. i am always available for her. i did tell my boss, family comes first, and she said she understands. and will hold my job in such cases. ( ifeel im rambling on and on).
    my mom is only 63 . she is my best friend and the greatest all around. i just worry all the time. and well my dad never did have any patience with her.(or us kids either)
    always in a hurry and only out for himself.
    well thanks for listening
    tarabell

  • #2
    Being a caregiver is very hard especially when you don't have a lot of support.
    The financial aspect is a whole other problem.
    I don't really have any advice, we are all pretty much in the same boat.
    My husband and I do not qualify for financial assisitance, but we just send everyone $10 a month and do the best we can.
    Hang in there, don't worry too much because there is nothing you can do about the situation. You are not alone and feel free to vent any time.

    Comment


    • #3
      Hi!

      We very often don't give our caregivers the respect they are due and every time I speak to one I feel that I must apologize. Without our caregivers and support network we would for the most part be lost.

      I think not only do we not completely understand the disease when told about but a lot of us live in denial about what we are/will be going through. My meds I was usually pretty good about taking but I always refused to think the diet would make a difference. I always tried to adhere to the rules but always considered myself "not that bad" and would pretty well do what I wanted, consume what I wanted and rationalized myself into a transplant done 7/05. Boy do I adhere to the rules now! There is so much thrown at you in the beginning that you are expected to understand that the frustration leads to denial. Hopefully, by chatting with us, and maybe you can convince your mom to join us, she will have a much better understanding of what is at stake and the multitude of questions she surely has will be answered. I understand that you are a nurse but sometimes things coming from other patients makes more of an impact. My daughter is a medic, a pain in my side but she keeps me on the straight and narrow, bless her. Without her and my husband I would have sometimes been lost but I also value the friends I have made in the various support groups and consider them my ESRD book of answers.

      Welcome to our group and hopefully you both will feel at home here soon. People of all ages here, I myself being 57 yrs young, actually 2 years since my "rebirthday".
      "Within every adversity lies a slumbering possibility"
      Linda
      Tx: 7/28/2005
      St. Louis University Hospital

      Comment


      • #4
        hi
        thanks so much; i'm am tring to do the best for my mom. next week she needs to
        get the graph cleaned out, as it already plugged up. but this weekend we are going to
        a tanya tucker concert and then maybe gamble a bit and enjoy ourselves.
        it's a long road to travel and i never give up hope......
        thanks again. tarabell

        Comment


        • #5
          You are so right about staying positive. Looking back as soon as June when my grandmother first started dialysis. I was so angry and bitter, I was mad at everything and everyone, but could not show it because I did not want my grandmother to worry. But looking at today it seems like she was never sick. She is doing so good now (knock on wood) we went on vacation for a week in this month, and we are planning trip in October for the weekend. She is not completely better she most likely will never be, but as long as she feels good and she is happy everything will be alright. We have learned to adjust to dialysis it is now just a weekly routine. I do not even think of it as a burden it is a blessing there is something the doctor's can do for kidney patients to help them live a happy and productive life. My grandmother also had to have her shunt cleaned out twice, once in August and once in June. She never had problems with it until she started dialysis. Also, I would like to add it is such a blessing to have everyone who participates with the forums here. We are not alone and we know how others feel. God Bless!
          God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.

          Comment


          • #6
            ShopGal,

            Your post should be recommended reading for all of those beginning dialysis. We try so hard to make people understand that dialysis is a very doable thing and that in most cases lives improve drastically. In the beginning that is so hard to understand and the frustration is overwhelming for both the patient as well as the caregivers. I'm so glad things have turned around for your family member and hopefully she will be an inspiration to those beginning in her unit!
            "Within every adversity lies a slumbering possibility"
            Linda
            Tx: 7/28/2005
            St. Louis University Hospital

            Comment


            • #7
              what is steal syndrom does anyone know/

              hi all mom just got another fistula and now is having trouble with her hand going numb. they said it might be steal syndrom what can we do
              to help this without another surgery.
              thanks for any info;
              tarabell

              Comment


              • #8
                Is she squeezing a pliable rubber ball? That helped me when my hand went numb after fistula surgery. I do 750-1000 squeezes per day in groups of 100.
                To the stars through difficulty!

                Comment


                • #9
                  new to group

                  Originally posted by LindaE View Post
                  Hi!

                  We very often don't give our caregivers the respect they are due and every time I speak to one I feel that I must apologize. Without our caregivers and support network we would for the most part be lost.

                  I think not only do we not completely understand the disease when told about but a lot of us live in denial about what we are/will be going through. My meds I was usually pretty good about taking but I always refused to think the diet would make a difference. I always tried to adhere to the rules but always considered myself "not that bad" and would pretty well do what I wanted, consume what I wanted and rationalized myself into a transplant done 7/05. Boy do I adhere to the rules now! There is so much thrown at you in the beginning that you are expected to understand that the frustration leads to denial. Hopefully, by chatting with us, and maybe you can convince your mom to join us, she will have a much better understanding of what is at stake and the multitude of questions she surely has will be answered. I understand that you are a nurse but sometimes things coming from other patients makes more of an impact. My daughter is a medic, a pain in my side but she keeps me on the straight and narrow, bless her. Without her and my husband I would have sometimes been lost but I also value the friends I have made in the various support groups and consider them my ESRD book of answers.
                  Welcome to our group and hopefully you both will feel at home here soon. People of all ages here, I myself being 57 yrs young, actually 2 years since my "rebirthday".
                  i am a caregiver for my husband. he had prblems before going on dialyasisin august of last year. he is having problems lowering his phosphorus all of a sudden any sugestions
                  would be appreciated.

                  Comment


                  • #10
                    Originally posted by bubbe10 View Post
                    i am a caregiver for my husband. he had prblems before going on dialyasisin august of last year. he is having problems lowering his phosphorus all of a sudden any sugestions
                    would be appreciated.
                    Besides taking binders as prescribed, he should also avoid certain foods that are high in phosphorous. Here are some links to help you out:

                    Phosphorous Finder
                    All About Phosphorous Binders
                    The Facts About Phosphorous
                    Phosphorous and Your CKD Diet
                    Shannon
                    KidneyFun // Kidney Korner // Organ donation awareness products!
                    If the world didn't suck...........We'd all fall off!

                    Comment


                    • #11
                      Some of the numbness is permanent.My thumb has been numb since my fistula surgery and my surgeon said it probably wouldn't go away because they had to reposition some of the nerves.

                      There is a lot of financial assistance available thru American Kidney Foundation and several other agencies. Your Social Worker should be able to help with these.I hope it all works out. I live alone and don't have a care giver.I wouldn't wish that burden on anyone.
                      Whatever does not kill me makes me stronger...Neitzsche
                      Flip

                      Comment


                      • #12
                        It is wonderful that you are able to take care of yourself.
                        Caring for my husband is not a burden.
                        It sometimes gets old and tiresome but that is partly what marriage is about.
                        I hope if I ever become ill (and probably will some day) that he is still around to take care of me.

                        Comment


                        • #13
                          Re: hi everyone

                          Being a caregiver is not just a a ongoing all time thing 24x7. There are times when all of us feel tired or want to vent out our feelings and it is forums like these which help out. It is good to vent out once in a while rather then to pent it up and feel frustrated.
                          The rubber ball should help the finger numbness at least a lil by giving the muscles some exercise and getting better blood flow into those parts. Just my 2 cents
                          Home Health Care

                          Comment


                          • #14
                            Re: hi everyone

                            I was diagnosed with ESRD June 2005, going to dialysis treatments 3x's a week. Recently, I had to have an upper knee amputation on my leg. I can't say enough about my caregiver, to which, is my husband of 13 years. He never did have to take me to my treatments but when it came to my amputation, he had to start taking me everywhere. Dialysis treatments, to the store....just anywhere I may need to go. I've told him "thank you" but I just don't think words can express just how much he means to me and not to mention how he's had to change his work schedule. Thank god his job is willing to work with him. (his boss said that family comes first).....
                            I've since got my prostetic leg to which I'll start physical therapy on Thursday! And have a doctors' note to drive to and from therapy only--which I can handle that. I'm just about 5 miles from where I need to go. Plus I have a live donor to which we are currently going through testing and should be completed end of November.
                            But I cannot say enough "great" things about caregiving. It takes a special person who is dedicated, has patience and is willing to be there for you.

                            Comment

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