Grrrrrrr!

[amybeth]

My husband has been on dialysis for about a year. I know it is a rough time for him and I try to be as supportive as I can. But I'm tired. I work full time. We live in a small 1 bedroom apt and I can barely keep it clean. He doesnt do anything to help me. I know he is sick, I know he gets tired. But I really dont think it's too much to ask to take your clothes off in the bedroom. And to not leave a trail of stuff everywhere you go! He works part time and he thinks that this gives him the right to do nothing. I know that i have to carry most of the load now. I get it. But Im so tired. and I feel like no one even thinks about how this affects me. Im tired of hearing "how is he doing" why doesn't anyone ask how I am doing? I know i sound selfish and Im not really! Just tired and overwhelmed. And I feel like I am alone. Am I the only one who feels like this?

[granny]

Re: Grrrrrrr!

I have end stage renal failire my husband has heart problems hence we both feel tired. I try to do what I can and always say some things can wait till another day, I bet your husband's mother went round picking up after him. Just make a heap then when he wants something it will not be washe dready for whedre as was not put in the RIGHT place the laurndry basket. He will learn hopefully.

[RhodaY124]

Re: Grrrrrrr!

This is exactly the place where you are supposed to vent & rant!! Glad I found it, as it gives me/ all of us an outlet but DaVita should have caregiver support groups in place @ the centers!!
My husband also started dialysis a year ago & I think I am more exhausted from it than he is!! Like you a lot of people ask "how is he doing", but very few ask "what about you?? how can we help"? One of our friends ( who is actually an internist) says "he is the healthiest looking sick person she knows" & it's true.
He does home hemo dialysis which requires a care partner ( guess who that is?) to be there the entire time he is on the machine & because of that I have given up most of my outside activities other than work!.
He still works full time, so dialysis is done in the evening ( 6 days a week) Our daughter tries to come & help when she can, but she is a newlywed ( yes, in the middle of getting him settled with dialysis, I was planning a wedding!) & I don't think it is fair to ask her to come here that often as it also involves an overnite stay.
I feel like I am constantly @ his beck & call & the only concession he has made to give me a break of any kind is that when he travel to see his parents in FL he goes to a center for dialysis....
I NEED HELP!!!!

[hilltopfarmer]

I realize you posted this a few months ago, but I just got on the site and thought you might line to know you are not alone. My husband has been PD dialysis for about a year and half. We are both retired so we are together 24/7. I have worked all of my adult life and it is really hard to stop and be home all the time. I too, realize he is very sick and doesn't feel good most of the time, but I have some of the same issues as you. My children said, "Mom you won't have to do this alone", however they have their own families and problems, so I really do have do this alone and I am overwhelmed as well. My husband will not allow any one, even one of our own daughters to change his dressing or hook him up to the machine. I do at least have an extra bedroom where I can sleep. The thing I hold on to is my faith and the promise that He will not give me more than I can handle. Hope knowing you are not alone in your feeling helps you hang on.

[Marina]

@Granny,
It is a well known fact that an illness is always HARDER on the caretaker than the patient.
I always hated when people would ask things like "how you be a diabetic you're so young, or "dialysis" but you look so healthy besides
you're so young that only happens to older people. I just wanted to say "SERIOUSLY, maybe my Dr made a mistake"
Of course I never did, I would just smile and confirm that what I had said was true.
Can you talk to the dialysis social worker? Centers have social workers who are not only suppose to assist the patients but the family members.



@Hilltopfarmer,
Is your husband not feeling well due to other health reason?
Is he removing too much fluid making B/P drop?
Is his Hemoglobin (Hgb) too low?
Although I know every patient is different, I was never homebound. I only felt tired or too sick to do anything if B/P or Hgb were too low.

I know in the beginning it does take a bit of an adjustment period, but after that energy should be restored.
In fact one of the benefits of PD is that you have the freedom to be out and about and even travel is you decide to do so.
Is there any way your husband can begin helping with his own care?
How about connecting himself or at least getting supplies better and not be so dependant on you?
According to research patients who get involved in their own care fair out better in the long run than those who depend on others,
and let's not forget that the caretaker NEEDS a break too!!
In my 6+ yrs PD journey I had me, myself and I to do and take care of myself. It felt great to be in control and in charge
of my treatment. I think taking ownership of our own health or care helps us a great deal.
Hope your hubby is feeling better.

[kirstyreyes]

I am so glad to have found this site, I just joined tonight after spending the day in the VA hospital with my husband and crying all the way home for no reason. I hate feeling resentful and can't talk to my husband about it he is dealing with enough. I tried to give him a kidney but wasn't a match so his son went for testing and we were so excited to hear he was... only to find out that the hospital won't do the transplant because of a clotting disorder my husband has. It was like getting punched in the stomach. We still have hope that the VA will do the transplant but I'm not as excited as I was 5 months ago. He has been on PD since November and is so extremely tired that he doesn't have the energy to do very much of anything just going to the bathroom exhausts him. btw the VA team that he has is awesome and we have become like family however I still feel like I have no one to talk to so thank you for being here.

[mccart]

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

[cassieg]

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?

[psouza613]

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!

[nana1142]

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.

[CqCasting]

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

[tryingtobeinit]

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....

[cjfebraio]

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.

[CaBauer]

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.

[karenv]

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.