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First Post: Caregiver Concerns

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  • #16
    Re: First Post: Caregiver Concerns

    Originally posted by O-U-Kid View Post
    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.
    I know how u feel my Father started his treatment in March 2009 and I stayed the first time but after that he stayed by himself your step father will get to know people that are there and make new friends and extended family just hang in there it does get better

    Comment


    • #17
      Re: First Post: Caregiver Concerns

      Hello Rochel and welcome to the forum. It is very tough to be a caregiver, especially in the circumstances you are in. The vomiting should ease off and you might try non-dairy puddings for this. It was the only thing my mother could keep down for days and she said it tasted better to her than the crackers that Hospice recommended. I made it using instant pudding mix. For the "milk", I used non-dairy powdered creamer and water mixed in equal parts. This did not upset her stomach and she was able to keep it down.

      I hope this helps. You will be in my thoughts and prayers.
      "Life isn't about waiting for the storm to pass...
      It's about learning to dance in the rain. "

      Comment


      • #18
        Re: First Post: Caregiver Concerns

        Rochel, you might not have read the other 2 posts wherein I gave this same info, and you must not have gotten the private message I sent to you either:

        CALL THE DR AND ASK IF YOUR HUSBAND CAN GET SOME NAUSEA MEDICINE. He can take this medicine constantly and he will not throw up anymore. I cannot imagine anything worse. My goodness Rochel, call as soon as possible.

        CALL THE DR AND ASK IF THE DR CAN PRESCRIBE SOMETHING FOR THE EDEMA. Edema is simply water collecting in tissue. This is not a reason someone cannot take Lasix, on the contrary it IS A REASON SOMEONE SHOULD! If he has another medical problem that prevents him from taking it then so be it but if he is in hospice and laying down all the time and has this severe edema then he has got to take a diuretic or he will drown in his own water. Please ask the Dr's about these things. It will make your husbands life, and your's for that matter, a whole lot more bearable.

        The way you talk it is as if he has no medical care at all. Call the Dr as soon as possible and demand some action. This is just awful.

        Comment


        • #19
          Re: First Post: Caregiver Concerns

          Hi Rochel,

          First of all, I am so sorry you are having to go through this. My grandmother recently passed away and I was her caregiver for 8 yrs (2 yrs on dialysis). You may want to ask your husbands doctors about a medication that can be given for nausea under the tongue, it is dissolved over time. This may help with the nausea. Also, you may want to see about getting some phenergan suppositories they can also be used for nausea and you wouldn't have to worry about him throwing the medication back up. We had hospice come in with my grandmother and they told me now to force her to eat, if she wanted something to eat let her have it. In your husbands case with him getting sick every 3 hours or so the medications may be able to help in case he cannot hold any food down. I hope this advice helps and I will be praying for you both.
          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


          • #20
            Re: First Post: Caregiver Concerns

            Dear Shop Gal,
            Thanks for your reply....It has taken me this long because I have tried many anti-nauseous medications since you wrote...Most of them just puts him out of it for hours....With this I miss our time together and with the end of life....I want some quality communication.....Now, I'm trying a new medicine called Metaclophen....It is a gel and you rub it into the skin....It worries me so much that he stopped eating and he needs to when taking medication....All I can do is say the Serenity Prayer....Our Pastor is coming over today to pray for us.....We are still looking for a Miracle....Hope you are staying as well as you can be with what you are up against....Bless you, Rochel

            Comment


            • #21
              Re: First Post: Caregiver Concerns

              Rochel,
              You have been on my mind a lot lately. How is everything?
              Other people's opinions of me do not have to become my reality.

              I do not have to attend every argument that I am invited to.

              Comment


              • #22
                Re: First Post: Caregiver Concerns

                Has anyone heard from Rochel lately? I have been thinking about her and her husband a lot the last few days. Just wondering if anyone has heard from her....
                Other people's opinions of me do not have to become my reality.

                I do not have to attend every argument that I am invited to.

                Comment


                • #23
                  Re: First Post: Caregiver Concerns

                  Please make sure you take time for yourself. You cannot take all this on yourself. I cared for my mother for a year while she was fighting lung cancer and it was mentally, physically and emotionally exhausting. I had very little help, even from my family. Now I am a caregiver for my boyfriend who has ESRD and although he does not require a high level of care, it is still difficult. While caring for my mom I found myself turning to alcohol an awful lot to relieve stress and things were getting worse. Thankfully, I did not become phsyically addicted but I did get a DWI that woke me up and made me put the bottle down. Don't make the mistake I did by trying to take on all the responsibility yourself!!! I cannot stress this enough!!! Speak to social workers, ask about volunteers if you have no family members willing to help, or they cannot help enough. Even if you have to pay a neighbor to sit with your step father so you can take a break-a walk, a movie, a nap-it is worth it. Maybe your county's public health nursing agency can help, or perhaps you have an Office for the Aging. Please also contact your Cooperative Extension office-many of them have Caregiver Resource depts. that can help you find services he may qualify for and/or volunteers who may be able to help. Please look into these options-if you do not, your physical and emotional health WILL decline, and then you are no good to yourself or him.

                  Comment


                  • #24
                    Re: First Post: Caregiver Concerns

                    Originally posted by O-U-Kid View Post
                    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.

                    Sounds like he is in about the same trouble other than kidneys than I am. I'm on dialysis now, however and the picture is so much better. I feel so much better after being all but dead upon being in the hospital for 12 days. My kidneys failed fatally and suddenly. Tell him that he absolutely needs to move around if he can. When his fistula matures and hopefully it will and he can slide into dialysis, they will pull all that excess fluid off and he will start feeling better within days. He must follow his renal diet and fluid restrictions and take the binders his physician will prescribe. My heart goes out to you, my dear. You really have a plate full yourself. My caretaker is wonderful and keeps my labs in perfect range all the time, by reading labels and cooking according to the strict diet we have to follow on dialysis. My thoughts and prayers will be with all your family as you enter this yet another world. Keep us posted on how you are doing. We are all in the same boat, and God is driving this boat. He will not lay on us more than we can bear, ever. Keep the faith, please,no matter what happens and trust Him to work these things out for good. He will, I know.
                    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.[/QUOTE]

                    Comment


                    • #25
                      Re: First Post: Caregiver Concerns

                      My husband has CKD and already has his fitula. Dialysis is getting closer and closer. We, however, went to our Davita Clinic several months ago just to observe and ask questions. They were absolutely wonderful and answered everything we asked. It might not hurt to get in contact beforehand to see what kind of help/support will be available.
                      Good luck to you and yours.

                      Comment


                      • #26
                        Re: First Post: Caregiver Concerns

                        Originally posted by O-U-Kid View Post
                        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.
                        Wendy, I sympathize with you with the problems you are facing. If it is any help to you, most patients on dialisis will nap throughout the treatment. I have witnessed at least one woman with some dementia problems, but the staff were very accomodating to her and the other patients coped with her talking out loud and such. In a center, there are seldom any family members inside the treatment area because of germs and possible contamination for all the patients. I know some family members that do sit in the waiting room for the whole time to save on gas, but not many. Dialysis is a different world for all of us in the beginning, including family members. Put your faith in God to guide your step-father and you as you begin this journey. The center with the social worker, nurses and techs will give you all the help you need to adjust to this tremendous change in life. I will add this about the diet, too. The renal diet is the most important thing for the patients to follow. Most of us have to take binders with every morsel of food that goes in our mouth. If these are not taken, death isn't long away with much pain. It is a very restrictive diet, but your dietitian will get you familiar with it. Ask many questions and get all the lists for phoshorus, potassium, snacks, do's and don'ts and follow them. Your stepfather will feel better as soon as he gets started on dialysis, so don't dread that part. His thinking may even become clearer, not curing alzhiemers, but helping in other ways. The toxins will be leaving his blood. DaVita has a wonderful help in all areas. My prayers are with you. My husband is my caretaker and it is difficult. I won't pretend that it isn't. Take time for yourself, be good to yourself because you won't be able to help if you are constantly worn out and pushing yourself beyond that certain point. You have a great outlet here with many people who understand your situation more than anyone else in the world. Use it and let them all speak love to your ears.

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                        • #27
                          Re: First Post: Caregiver Concerns

                          thank you all for the information. You have helped me out emensely.
                          Librarian
                          Father's Caregiver

                          Comment