tired of caring....

[KarenInWA]

Hi Tiffanyjean,
I am my husband's carer. It's extremely difficult. Some days I resent the situation so much that I want to run away. He had a transplant on July 22 and in some ways life has become more difficult for me than when he was in dialysis. Don't get me wrong, I am thrilled and grateful for his new kidney, but I have been working 6 (some weeks 7) days a week, 12-14 hours a day, to try and make up for all the wages I lost having run out of sick time during his surgery/aftermath. I resent him sometimes because he does NOTHING to help me out. I take care of his prescriptions, appointments, meals, everything. Sometimes I say, please just wash the dishes for me today. Please take out the garbage! He will do it, but with a lot of grumbles. He sits all day watching the New Yankee Workshop on tv. OK, now I feel terrible for complaining about him. He's HERE and that's what I have to be grateful for. But its still hard.

Wow, reading these posts, and this post especially - make me glad I'm not married! I am 42, was on dialysis for 7 months back in 2011 before receiving a live donor transplant. My care partner history is sporadic at best - I have to mainly rely on myself to get things done, and relied on the kindness of others when I was recovering from both my transplant surgery and my emergency-save-the-transplant-from-botched-biopsy surgery 3 months later. If the boys some of you are married to had to survive what I went through back in 2011-12, I bet they'd be 6 feet under after just a few weeks! How do these so-called adults get to be such babies??? What doesn't kill you makes you stronger, unless you're a wimpy "oh woe is me, look at what I have to go through" male who doesn't deserve to be called a man and decides to throw everything regarding his care to his loving wife. Sorry for being so harsh but...wow.......

KarenInWA

[Simon Dog]

He sits all day watching the New Yankee Workshop on tv.

Then he should have learned how to build something for you.

[frankswife]

Simondog, you're right. I asked him to build me an Adirondack chair. He says he can't because he needs all the tools the master carpenter on the show has to get it done right. Mind you, this man has a garage full of tools. He just wont do anything. I'm thinking he's really not feeling good.

[okarol]

Hi Tiffanyjean,
I am my husband's carer. It's extremely difficult. Some days I resent the situation so much that I want to run away. He had a transplant on July 22 and in some ways life has become more difficult for me than when he was in dialysis. Don't get me wrong, I am thrilled and grateful for his new kidney, but I have been working 6 (some weeks 7) days a week, 12-14 hours a day, to try and make up for all the wages I lost having run out of sick time during his surgery/aftermath. I resent him sometimes because he does NOTHING to help me out. I take care of his prescriptions, appointments, meals, everything. Sometimes I say, please just wash the dishes for me today. Please take out the garbage! He will do it, but with a lot of grumbles. He sits all day watching the New Yankee Workshop on tv. OK, now I feel terrible for complaining about him. He's HERE and that's what I have to be grateful for. But its still hard.

I went with my husband to a chronic pain treatment program at Mayo. He was there for a month, I was in the family program for a week. They basically told us caregivers that we are doing way too much. That the patient needs to participate in life. Without having activity and a purpose, they'll end up with depression or resentments (or both) and that, within reason, we should have every expectation that they help with light housekeeping, laundry, paying bills, food prep and other mildly physical activities. One woman said she had stopped putting her husbands socks and shoes on and he started doing it himself that morning. She almost broke down and cried. She had been doing it for 7 years!!  It's not easy, but it's worth it to try because otherwise the caregiver is burnt out and no good to anyone. I know dialysis is not the same as a chronic back injury, but there are many dialysis patients who live alone or care for other that do it themselves.  After a transplant it should be a lot better. It can take time but hopefully, with encouragement, he will take on more. Make a list and stop doing those things on the list!

[Simon Dog]

I have thus far refused to quit my job and go on disability, and the only thing I have my care partner do is cover for emergencies while I am on the hose.    If I start acting disabled, I'll feel disabled, and then life will go downhill.

[Bill Peckham]

I've been asked to participate in a debate at the Annual Dialysis Conference coming up in February in Seattle:  Home Dialysis Care Partners They Are a Must, They Are Not Necessary

As someone who has lived alone and self dialyzed for 13 years I'm obviously taking the "they are not necessary" side. This thread highlights the significant uncounted cost of a policy that requires others to care more about, have more responsibility for, the treatment than the one being dialyzed. The policies at many providers require dependence on a caregiver, this significantly increases both the disease and the treatment burden since it is now two people who are dealing with the rigors of this gd disease and its treatment. A case of a well meaning attempt to decrease the immediate burden on the dialyzed resulting in a significant increase in the burden over the mid to long term.

[Simon Dog]

Bill -

Two points to cover:

• In an extreme case, a patient could choose stopping treatment over a clinic sentence.   Is it the position of Fresenius and DaVita that such patients are better off dead than with solo home hemo?
  
• The requirement seems to be based on liability - "If someone dies because they did not want to do in-clinic dialysis, that is fine - but if they die while going solo, their family might sue us

The role of the medical professionals should be to educated the patient as to risks/benefits, and then let the patient make the decision.  That is lacking with current care partner policies.

A case of a well meaning attempt to decrease the immediate burden on the dialyzed resulting in a significant increase in the burden over the mid to long term.

I don't believe this is the reason.  The reason is liability exposure.  As long as some places require a partner, it is all too easy for legal counsel to say "If anything happens, contingency fee counsel will point out that other clinics require a care partner and use that as evidence that allowing this patient to solo was negligent."