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  • First Post: Caregiver Concerns

    This one might be long. I am the caregiver to my stepfather who has failing kidneys, diabetes, missing toes, also had a triple by-pass in 2006, a defibrillator in January 2009, just to name a few of his problems. In addition, he has "mild" cognitive impairment from multiple mini-strokes, but in miniscule increments losing more of his capacity to reason.

    He is going to have fistula surgery tomorrow, Fri., 2/27/09. I am worried because I can see the future and it ain't pretty. I am anxious because his heart is so bad, I'm not even sure it is wise for him to go on dialysis in a few months as has been urged by most of his doctors.

    He is, to put it mildly, a miserable man. He does not enjoy much of anything, doesn't read, doesn't know how to converse. He is so sick he can't go for walks. He has alienated so many people, including 5 of his 6 children (my half-sibs) that he has little company, and that for only short periods of time.

    My mother, his wife, has stage 6 Alzheimer's, and cannot talk. Being the caregiver for these two extremely compromised parents is exhausting. The crushing, grinding pressure of coordinating their care while working 29 hrs. a week, and supervising their home attendants is relentless.

    And now, with the fistula surgery, and dialysis looming in the distance, I am more distressed. I read what, to me, are horror stories about our poor seniors sitting in dialysis centers, yelling, pulling out their tubes, and I imagine my stepfather will do the same. He pulled out his tubes right after his triple by-pass. With his cognitive impairment becoming worse, dialysis is a nightmare in the making.

    A few weeks back, my stepfather stated that he would need company to and from dialysis when it begins. Inside, I panicked. I cannot take that kind of time off from work but since he is not thinking clearly, and never listens, I could not respond at the time. I assume the "right" thing to do is to go with him the first time. But I am dreading it immensely.

    From what I have read here, sedatives are a possibility, although they get filtered out along with the toxins. The best case scenario would be if he napped through the procedure. All I can do is hope.

    Any and all comments are gratefully accepted. Thank you.

  • #2
    Re: First Post: Caregiver Concerns

    O-U-Kid, sounds like to me you have your plate full. At the Davita centers there are social workers on staff. Is there a social worker where your step dad goes? Maybe working with a social worker will help you out since you are now a caregiver for two folks that have very serious conditions. I am concerned of your personal well-being. Is there anyone in your family that can help you out? I am not familiar with dialysis or experienced in being caregiver at your level. I know that there are wonderful caregivers on this forum that might be able to provide additional insight regarding your situation.

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    • #3
      Re: First Post: Caregiver Concerns

      Wendy, thank you for your quick response. My stepfather has not yet begun dialysis. He is only getting a fustula tomorrow (2/27/09).

      I have one sister who is supportive, and understands all my woes. However, she, too, has CKD, and is waiting for a kidney transplant.

      I go on the Alzheimer's Discussion Forum and it has helped me immensely to share my rants and concerns there. Their feedback has helped me through many a crisis. I am hoping I can get the same kind of support here.

      When he does begin dialysis, I will see if there are social workers at the clinic with whom I could converse about him and his needs.

      I am just so afraid of the additional pressure right now.

      Thank you.

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      • #4
        Re: First Post: Caregiver Concerns

        O-U-Kid, Welcome to the Davita site. I guarantee you will find the support you need here. Everyone is wonderful and full of compassion and support. There are many caregivers on this site as well as people with CKD.
        ~ddarling~

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        • #5
          Re: First Post: Caregiver Concerns

          O-U-Kid, just like ddarling just said, you will find the support here that you are seeking. We are like a big family. I have CKD and I really love these folks here on this forum. Without the daily support I get, I don't know where I would be. You indeed have come the the right place!

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          • #6
            Re: First Post: Caregiver Concerns

            I have been reading posts in different areas of DaVita and keep finding out just how much I don't know. I am getting ahead of myself, which has been my style for most of my life, in spite of knowing one can only live one day at a time. But I have the curse of being able to live dozens of alternate lives at a time! (lol)

            Anyway, what is GFR?

            I read that someone on dialysis needs to go on a "renal diet". If it means limited protein, veggies and fruits, it will not happen as far as my stepfather is concerned. He is going to get a fistula tomorrow (2/27/09). When it matures (6 months?) he will go on dialysis. He is the boss of this house, and will not, I repeat, will not allow anyone to do the right thing regarding his food. He and my mom have a 12 hours a day/7 days a week home attendant and no matter how much I tell them not to buy him prohibited foods, they must obey him and they buy him hot dogs, cheese, meats (he eats meat every single day) and anything else he wants. He rules. Not me.

            How will a bad diet affect his dialysis?

            More questions will come as I can formulate more. Still processing . . .

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            • #7
              Re: First Post: Caregiver Concerns

              I sympathize with you, O-U-Kid. You appear to have an almost impossible job. Diet is an important adjunct of dialysis. Right now you should inquire whether your stepfather should be on a pre-dialysis renal diet. This diet is low in protein, potassium, phosphorous, and sodium. The exact levels are prescribed for him by a renal dietitian working with his nephrologist and are based on the results of his lab tests. Once a person is on dialysis it switches to a high protein diet, but still low in potassium, phosphorous, and sodium. If your stepfather doesn't follow the diet he is much more likely to have bad side effects and to place stress upon his already weakened heart. You might want to ask whether he is a good candidate for peritoneal dialysis. This is the type of dialysis that is done through a catheter in the belly and uses the peritoneum as a filter.
              Basically, you instill a special solution through the catheter into the abdominal cavity and then drain the fluid out several hours later. When the fluid is drained out, the toxins come with it. I suggest this because peritoneal dialysis is done at home and there are no needles or sitting still involved. It also allows for a more liberal diet than hemodialysis. I fear that if your stepdad is not willing to at least try to follow the prescribed diet he won't do very well on dialysis.
              To the stars through difficulty!

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              • #8
                Re: First Post: Caregiver Concerns

                I will talk to my stepfather's nephrologist about seeing a dietician and getting some pointers on an appropriate diet.

                After his fistual surgery yesterday, with great frustration, he asked about what to eat. I told him it is not about eating whatever he wants in huge quantities; that it is about eating bland foods (that's what they are to him) to stay alive, and not use food for pleasure, which is what he does. That is the crux of dealing with him. He wants foods that are hot, spicy, and very flavorful. I said no more.

                Now I need to learn more about food in general, and train the home attendants to do the right thing and not give in to his rages and attacks and requests for "bad" food.

                What my sister and I want is to convince him to eat more appropriately in hopes of postponing dialysis as long as possible. Although I have heard of people being on dialysis for 20 or 30 years, and still living fulfilling lives, that will not be the case for my stepfather.

                He watches t.v. all day, never goes out, never does anything. My sister and I had to explain that dialysis for him would be to keep him alive, not to improve his functioning so he could run the NYC marathon.

                Our fear is that, since he is the most impatient and ornery person on the planet, after being on dialysis for a bit, and having to wait (he has NO patience) 4 hours for the procedure to complete, he will say he is not going. We already told him he cannot stop once he starts. Period.

                I could ramble on forever. Thank you for your feedback. I will keep coming back for more, and asking yet more questions.

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                • #9
                  Re: First Post: Caregiver Concerns

                  I can only talk about my own experience of course and no one else. But I was very sick before I started dialysis. I did not go out either just watched TV. tried to do chores couldn't had to stop working,depressed, So I understand. After about a month of dialysis I got all the toxins out, i perked back up felt better emotionally as well as physically.My appetite came back (both a blessing and a curse LOL). So I am saying it gets better much better really! He may not be able to believe that now,again understandable. But you keep showing him love and support and he will go. He will probably feel better pretty fast and his mental state will change.It's not all easy don't get me wrong but worth it. Hang in there your support to him IS VITAL.

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                  • #10
                    Re: First Post: Caregiver Concerns

                    O-U-Kid, I may have a bit of good news for you. While sodium, potassium, phosphorous and protein are restricted in the renal diet, spices (including hot and spicy ones) are not restricted. Now if your stepdad has ulcers or stomach problems along with his kidney problems the story is different. I encourage you to go to the DaVita Diet Helper which can be accessed from the home page of this site. If you plug in his diet prescription you will be given a set of menus with recipes and shopping lists. Many of those recipes are quite flavorful. I personally rely heavily on Mrs. Dash seasonings to add zest to my foods. I am a retired chef and like to eat well. While I have had to give up some of my previous eating habits, I am still able to eat well-seasoned food that tastes very good. The person who told you that the renal diet had to be bland was mistaken.
                    To the stars through difficulty!

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                    • #11
                      Re: First Post: Caregiver Concerns

                      Thank you all for your support.

                      Chef Nancy, isn't cooking the greatest? I'm not a chef, but I'm a heck of a great cook. Unfortunately, my stepfather hates my cooking, or he refuses to eat it. He refuses to eat anything but what he has eaten all his life, Puerto Rican food. Period. He hates pasta, tuna salad, omelettes (how could anyone hate them?) and just about anything else.

                      He wants rice, beans and pork chops or fried chicken or steak. Does not want veggies. Wants stewed cod fish, baked salmon, shrimp stew. He wants ham & cheese, cheese hot dogs, fried plantains. He snacks on cheese at night. Drinks diet ginger ale by the quart. We already use Mrs. Dash spicy, and he is tired of it, and refuses to use it. For Thanksgiving, he wants roast pig, not turkey. And potatoes, and rice with pidgeon peas.

                      The bottom line is he wants what he wants and refuses to bend. I tried to have him eat an egg white omelette and he refused. I offered cottage cheese, asking him very kindly at least to taste it. No. No. No.

                      He has mild cognitive impairment due to TIAs. He was impossible to reason with before his impairment. Now it is even harder.

                      He was hospitalized three times in December/January for cellulitis, congestive heart failure, and pneumonia. Regarding hospital food, he only picked at the chicken, drank the Sanka, and ate the fruit. He ate nothing else and lost a lot of weight, only to gain it all back when he got home.

                      Even eating Puerto Rican foods, he will not eat the portions that are recommended. He eats like a horse, large portions, with an 8 oz. glass of diet ginger ale.

                      Sometimes he even makes the home attendants buy him Chinese food or fried plantains with fried chicken wings. They do not dare go against his wishes for he obsesses and spends the entire day complaining and acting ornery, insisting he is the man of the house and they have to do what he says.

                      The point is I have to repeat the serenity prayer, knowing I can't change things. I was just hoping against hope.

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                      • #12
                        Re: First Post: Caregiver Concerns

                        The fried foods would not necessarily be a problem except that he has serious heart disease. It sounds like feeding your stepdad is an almost impossible task. When he starts dialysis he will have to restrict his fluid intake. The usual allowance is 40 oz. per day and that includes gravies, soups, sauces, and anything like jello or pudding that would be liquid at room temperature. If he keeps eating so much cheese, not only will he be more likely to make his heart problems worse, but he will also start itching uncontrollably from phosphorous overload. I am not terribly familiar with Puerto Rican food, but I am sure that there are some things that he could still have. However, anything with beans or cheese is out or at least needs to be restricted to very small, very occasional portions. Once he starts dialysis he will have a hard time with cramps, headaches and so on because of fluid overload. In fact, if he doesn't adhere to his prescribed diet he could precipitate another heart attack or stroke.
                        To the stars through difficulty!

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                        • #13
                          Re: First Post: Caregiver Concerns

                          Just a note - I use Mrs. Dash spices - Hot & Spicy or Southwest Chipolette to spice up my chicken and fish. Does the job and really makes the food taste good with no sodium.

                          Good luck with your stepdad - I'm sure once he gets on a renal diet, he will feel much better.

                          Comment


                          • #14
                            Re: First Post: Caregiver Concerns

                            You can add all the spice, herbs, even jalapenos and habaneros you want! Roast a Jalepeno stuffed with 1/2 oz of cream cheese. He will LOVE it. Dice jalapenos and sprikle on stuff. Grilling veggies adds lots of flavor. I realize you are probably strapped for time and the daytime caregivers are not likely to know how to (or want to) grill veggies. You have a very difficult job ahead of you. If you can work any of these things in, try them.

                            Good thing he ate the fruit. Concentrate on that. There's lots of fruit out therek, give him some at every meal and make him eat it first (top hopefully fill up a little with it)

                            I'm going to throw this question out there: is your stepdad healthy enough for all this? He has lots of problems. He can refuse to do dialysis.

                            I"ll be thinking of you.

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                            • #15
                              Re: First Post: Caregiver Concerns

                              I'm new to this Forum...I am a caregiver to my 66 yr old husband...prostrate cancer/kidney failure...my dilemmas are as follows: he gets terribly nauseous and if I don't give him something every 3 hours he throws-up....we are having spats over this because he does not want to eat and he has to eat or get sick....To all caregivers...do you have any ideas on this...also, what about Dramamine....does this work...or will be continue to get sick regardless...It seems that buttered rye bread helps...what else....We are also not talking or communicating like we used to...His numbers are really bad and he has severe edema so he cannot take a diuretic and He is with Hospice and is on Morphine from time to time...in fact, they encourage it....I miss our time together and he is fighting this thing everyday....There are not in the future plans for Dialysis so that is not an option...He sleeps most of the time and I really feel bad for how lousy he feels all the time....Does this ever let up...especially the nauseousness??? Thanks for all your help and guidance and God Bless all of you that are caring for your loved ones and those that are suffering patients

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