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  • frustrated1
    replied
    I am so frustrated - My husband has been on dialysis for 5 years (peritoneal, clinic hemo and now transitioning to home hemo). We are in our mid-thirties and have a young son. I'm so darn tired, and probably selfish too. We both work full time.....and now I will be serving as his care-giver 5-6 nights a week, work and take care of our child. No one gets it- I am loosing my complete freedom. Currently, when he goes to the clinic at night 3xweek, they serve as his caregiver and I spend time with our son, running errands, normal wife/mother duties. Now that he will be doing HHD, I'm responsible for his care. Yes, the HHD is suppose to be gentler, extend his life expectancy, and make him feel better. If I dare complain to anyone, they don't get it, think I'm selfish, don't see what I am giving up, or just feel bad for him for being hooked up every night. I am beginning to feel resentful, angry, frustrated.....every emotion in the books! Please tell me I'm not alone...is it going to get better?

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  • stumpr54
    replied
    It doesn't have to be that way as evidenced in my August 2014 post entitled: HHD Patient & Care Partner Equitable Division of Labor

    It helps immensely if the patient is a dogged "do-it-your-selfer" and very task oriented. That's my gig. It helps even more if your care partner is a big "do-it-your-selfer" and equally task oriented. We've been married 36 years (I'm 60, she's 58) and doing HHD from the beginning - just over two years ago. We've had no difficulties with our "division of labor".

    For the scores of treatments I perform that go without a hitch, there's always the occassional one that does require her assistance for some aspect. I also involve her more heavily when I'm developing a new buttonhole site. Since I've developed 8 new sites in the past two years, her assistance has been utilized with some regularity.

    I perform all of the NxStage System 1 cycler set up and connections/disconnections, make the batches of dialysate with the PureflowSL, and do the inventory restocking in our dialysis room. My care partner will manage the NxStage inventory as well as the supplies from my HHD clinic. My care partner set up individual storage baskets and other containers for supplies in the dialsyis room as well as our basement storage of bulk supplies and NxStage product. We've got a solid stock rotation process using visual markings or physical order/location. Most of this comes naturally to us and even moreso to me as a process improvement professional for over 30 years with a keen eye on the reduction or eradication of waste and variation in all processes.

    When traveling with the NxStage System1 and ancillary equipment, we split up the aggregation of needed supplies and equipment, making sure nothing is left behind. Much of what we require is already organized for easy packing. Nothing like good planning and repetition to support the desired results.

    My care partner's big role in our 5X weekly treatments comes at the end of treatment. This is after I have returned my blood and clamped off and disconnected from the cartridge blood lines. I will pull the first needle and hold pressure, then she pulls the second needle so I can hold pressure on both sites simultaneously. During the 15 minute dual site pressure holds, my care partner strips the cycler and disposes of the spent cartridge and saline bag and wipes down the cycler and Pureflow with a Chlorox wipe. If a new batch of dialysate needs to be set up, she will remove the expended SAK, prep it for drainage and recycling (plastic) and set a new SAK into the Pureflow tub. After completing my pressure hold, I will then load and connect the SAK lines and begin the batch or wait until that evening or next morning to start the new batch of dialysate.

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  • Gailr46
    replied
    I took care of my husband for six years, he had COPD and congestive heart failure. He had been sort of a tough guy most of his life, what many called a mans, man. His last two months he couldn't even turn over in bed by himself, he was totally dependent. He got pretty crabby and watching him slip away day by day was the hardest thing I've ever had to do. One of my fondest memories was; we were sharing a dish of ice cream, he couldn't feed himself by then, and we were chatting. I told him that I hated what was happening to him and that if we wanted to go I would understand and that I would be ok. He said that he knew I would be ok but he did not want to leave me. Can you believe that he still loved me so much that he would rather suffer than leave me. Talk to your loved ones, tell them how you feel, be honest with them. Tell them that you can't do it all all alone. I'm now a on dialysis and start training for home hemo on December first, my daughter and granddaughter are training as mt care partners. We plan on training my grandson and son in law as well. I live in my granddaughters basement apartment but I'm completely independent. Do my own cleaning, cooking, laundry, bills, shopping and driving. It is currently a 45 mile commute one way to dialysis. I spent from the middle of January to the middle of march in the hospital and almost died three times, so we can get better and be involved in our own care. Good luck to all of you and I will keep you in my prayers.

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  • septcat
    replied
    Im in the same boat as the rest of you; husband has been doing hhd for 2 full years now. Five days/nights a week. Has a match for a kidney but needs to lose weight. My complaint is that we have problems sometimes when he's on the machine: air in the lines, alarms going off, etc. I'm at the end of my rope with it all. Although we had training at the beginning of this, I'm not a nurse and I don't handle it well. He seems to be content to do the dialysis (although I'm sure that's not really the case) and doesn't really work at all to get the weight off to get the kidney transplant. My daughter is the donor and she's starting to have second thoughts about it because he doesn't seem to want to take care of himself enough to take care of the new kidney! We're both retired and were looking forward to enjoying ourselves while we're still young but now I'm starting to wonder how badly he really wants to enjoy life or is he just content to sit and dream about it while he's doing dialysis. He also watches tv for four hours while he's on the machine, while I clean or do laundry or whatever needs to be done around the house. Family and friends have told him if it was them and they had a chance to get a kidney and start over they'd do anything they could to lose weight. Not him. He just makes excuses.

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  • ChinaCar
    replied
    Hi,

    I found this great section of the DaVita website that might help relieve some stress. Check it out!

    http://www.davita.com/kidney-disease...e-care?/e/6996

    Leave a comment:


  • Chuck Beretz
    replied
    It is great that you are both there to support each other. As for the back and stomach cramps -- have you tried Quellitall? Works better than quinine did when it was still available. You don't need a prescription either.

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  • karenv
    replied
    I have been doing my husbands HHD for 5.5 years. He had to have both of his kidneys removed due to Renal Cell Carcinoma. It has been very hard on both of us since we are also raising our grandson. I worked in Hospice for 15 years. I met many spouces losing loved ones. It is never easy. Being a caregiver is harder than being a patient. But remember that it is only temporary. You don't know how long you will have your loved one and when they are gone you don't want the memories you have to be of guilt because you had to do a little more than the other person. They don't want to be a burdan anymore than you.

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  • CaBauer
    replied
    I'm not sure if I should post here as a dialysis patient instead of a caregiver but I wanted to present the side of the patient as well. First, I want to say that in a relationship BOTH people should help with the day to day chores in one way or another. I am often feeling sick and tired but I don't let that stop me from being involved.

    After dialysis I feel very weak and light headed. If I do any work directly after dialysis I come very close to passing out. My vision gets very blurry and dark, my back and stomach cramp and I get very light headed.

    How it works in my household is that I take care of almost all of the cooking and cleaning and my wonderful man takes care of everything outside of the house. Yard work, fixing the cars, etc. I find that when I do the work inside of the house I can sit down and take breaks more often. It is just more convenient. We both keep an eye on each other and help out when needed.

    I am on disability ( not by choice ) and he works full time. I know he is out there providing for me and I can't take that for granted! Perhaps recommending that your loved ones nap after dialysis then try simple chores would be a good start. Sit down with them and try to explain that their help would mean a lot to you would be a good way to break the ice!

    I hope all goes well for you all. Thank you for taking the time and for loving someone who may not be as understanding. They love you and they need you.

    Leave a comment:


  • cjfebraio
    replied
    My husband started HHD just 3 months ago; we are both in our 50s and both work full time so HHD seemed like the best option. He does treatments 6x a week. I've been feeling a lot like all of you in this forum and I felt guilty whenever I'd feel a little resentful about "giving up my life" for 4 hours a night. Working full time means we have to hurry home from work and get dinner and try to have things cleaned up and have him on the machine no later than 7:00 p.m. My husband says he feels 150% better since doing HHD and that's great; prior to starting dialysis he was sick and had no energy. Also prior to him getting sick we moved into a much bigger house. And then his doctor told him he should start thinking about a kidney transplant and things just spiraled from there. We were glad he was able to do HHD, that it was an option. But now the responsibility of taking care of this big house has fallen pretty much to me. The reason I feel resentful sometimes is because for the 3 1/2 hrs a night he's on the machine he's able to sit and watch tv while I have to do all the household stuff. You all know about that. We both work at the same place, so while people may ask him how he's doing I'm lucky enough to work with people who genuinely care how I'm doing, how I'm handling it. And at times when I'm not handling it well, I can tell them and they listen. We have adult children and he has siblings who have offered to help but like you, I feel like they have their own lives, their own families to take care of so we don't ask. But you know what, I think rather than just complain and feel resentful and sorry for myself, I might just start asking them to come in one night a week once a month to sit with him. And I might just ask family members to help around the house; I have teen age grandchildren who would be happy to earn a few dollars helping me out. I've also just started a book discussion group that will meet at my house once a month so I can be home but still have some social connection. That's where the support comes from. It's better for our health and well being than just being depressed and angry because we've been put in the role of care taker through no fault of our own but because we love someone who needs our help; and thankfully we're able to give it.

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  • tryingtobeinit
    replied
    I am also new here, and turned to this page because my 17th anniversary is today and my PD spouse has been in bed all day due to not taking care of themselves for several days. My efforts to encourage self-care are rebuffed. I am trying to be supportive, but honestly, I am at the end of my rope. I was able to busy myself hkining with friends and doing work to get the garden ready, but since starting PD in October, we have been drifting further and further apart. A part of me is ready to walk out of the relationship, we have 2 kids together so the less winey part of me intends ot stay. Does the sex ever resume, any suggestions on how to encourage them to be more willing to have empathy on the impact of thier choices on the family? My support system understands to a certain degree, I wish I could have as much fun with my spouse as I do with my friends....

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  • CqCasting
    replied
    Hello, I'm new here and my first time on this forum. Thanks for posting this as I'm starting to feel some of the same issues several of you have expressed. My spouse and I have been together for just over 40 yrs. now and I'm really looking forward to retirement, with any luck I'm hoping to escape in June 2013.
    We just started PD about 3 months now with the intent on having the freedom of travel and taking in the sights of this great Nation is the driver. Plus the freedom of home treatment. What I failed to consider is that my wife has become very dependent on me. Working full time with 2.5 hrs commute, and now all the household chores including shopping, cleaning, yard work ya (the rest is like an old country song). We still have memories of hiking the high country and camping in the wilderness. The point is, it seems I no longer have time for self. I think we all need time for self, even if for only a day out of the week. All work and no play is bad for business and hard on relationships.
    To keep ones sanity and keep the peace we need to establish a day or even a couple of hours each day for self. During this time frame you use it to do what you enjoy doing most. Have some fun relax and find some sanity or purpose in life. OK thats my 2 cents, hope it has some value

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  • nana1142
    replied
    We started doing home dialysis in July 2012, We are both in our early 50's. I also have given up my entire life to care for him. He has become very needy. Its like he his afraid of being alone, he has to know where I am at all times, and panics if thinks hes alone. He also had triple bypass in 2/2012, and his right leg amputed in 1/2011. I do everything around the house, keep track of all doctor appointments,bills,etc. I feel so overwhelmed everyday. I quit my job to take care of him, and I had surgery on my right shoulder due to an injury at work lifting a resident at the retirement home I worked at. I still dont have use of my arm. I know how you feel psouza613.

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  • psouza613
    replied
    WOW everyone... I feel the exact same way you all do! I have been a caregiver for my husband for a year now as he started HHD last November. We trained and do it at home 5 nights a week. I feel like I have given up my entire life. I also do all of the cooking, cleaning, shopping, etc. I KNOW he doesnt feel good alot but it doesnt give him a license to do NOTHING. He seems to find energy to work on his racecar and race when he has a chance. For that he makes time. Time for me?....... It doesnt happen. I am chained to the house 5X a week for him but feel like I get nothing in return. I work full time at a job I really dont enjoy. I do love him very much as we were just married last year....... but its not supposed to be like this. Thanks for letting me rant!

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  • cassieg
    replied
    i feel the exact same way you do. (i thought i was alone). i do not work, but i have some health issues of my own. i do everything in our house hold. we burn wood for heat in an outside boiler, i have to fill it twice a day , i do all the housework (laundry, mopping dishes, etc.), i do all the driving (drs.appt., which is an hour away), david is the same, as he does nothing to help me out at all. it's like having a 2 year old again.i do all the ordering of supplies, i have to keep track of all the appts. we have.i take care of all the bills. i even have to hook up the bags at nite and hook him up and unhook him in the morning, david does absolutly nothing !!! i'm also very tired and fed up. we argue all the time and i fall asleep at nite crying. i'm just sick of it all. i need help, but i don't know where to turn?

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  • mccart
    replied
    hi i uderstand how u feel its very hard u are not the wife any more u have become the caretaker i cant beleive he still works my doesnt got on ss i got a helper though dept of human services i live in ill to help me with my husband he now does home dailysis we have wnt broke on gas and hospital stays hang in there girl i know it sucks they realy feel like thy have the flu all the time and very depressed and hateful its from the toxins in there bodybut becomeing care taker sucks too i have to work out my house so i can stay at home all time now so i never get away i try 1 x week to leave for day my helper stays with him that my be what u need it helps me alot i leave for day helps to cope for next week lol good luck i understand

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