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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
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....
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.
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.
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.
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.