Dad has had CKD for several years and about a year ago I was finally able to get him to see a nephrologist. Prior to that, his disease was managed by his primary doc by my dad's choice. Finally, his urologist urged him to see a nephrologist and he agreed.
Dad also has a history or CHF, but has not seen a cardiologist.
He has been under the care of a urologist for slow growing prostate cancer for 20 years.
He is also a T2 diabetic and has a history of gout.
His GFR has been declining over the past 2 years. At his check up 3 months ago, his GFR went to 15 and doctors wanted him to prepare for dialysis. We went to all the classes and he decided against it.
His labs for this month's visit, which we got a few days ago, showed GFR declined to 13. We are awaiting results of second test to confirm.
While the literature for folks who go off dialysis indicate death will occur in days to weeks, there is little literature about how long it will take in someone who never started dialysis. One article says months or years.
Parents live in AL, but I do all medical appointments and day to day stuff they need help with. It has been an exhausting 4 years with few breaks. My brother visits a few times a year, but this is the first time he has come down specifically to allow me respite.
My husband and I were scheduled to go on a 3 week cruise next week while my brother takes over care giving for both parents (mom has dementia and is on hospice for severe aortic stenosis). Dad's next nephrology appointment is the day we are scheduled to leave on cruise.
I really don't want to go if dad might pass in a few weeks and it would be unfair to my brother to have to be the sole caregiver at end of life. I also would not enjoy the trip, however, my husband wants to go and since he did not purchase trip insurance, we cannot get a refund. I feel squashed between my husband's needs, parent's needs and my own conscience.
Both my brother and I have DPOA, are in sync with care decisions, but I am executor.
If I thought dad would hang in there for a month or more, I would be okay going, but I just don't have enough info to go on.
Anyone have similar experience?

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Good news for all of you.

Enjoy your cruise.
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Update: dad's new lab results came back and are much better, so we are going on the cruise. And my brother is going to stay longer than originally planned...won't leave til we get home

THanks to all for your input.
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I agree with Realyreal..........your Dh is not the bad guy for wanting & needing a break from all the care giving. You just don't know how long dad has left, so to go on a cruise now could possibly ruin your good time. I had a big trip to China and Tibet planned and had to cancel it when my dad fell and broke his hip back in 2014. I did purchase trip insurance, however, as I had 2 elderly parents and as the only child, I ALWAYS purchase trip insurance.

The trouble with asking the cruise company to postpone your trip is this: WHEN is a 'good' time to take this trip? With a father who's refusing to extend his life with dialysis and a mother who's on Hospice? The only 'good' time to travel is once they're both gone. You, however, may be on YOUR deathbed by the time that happens from sheer burnout!!! This isn't just about the folks; it's about YOU and your marriage, too. And about taking a break and being okay with doing so. Your brother is coming down for the express purpose of allowing you to take this trip. Why is it 'unfair' for HIM to be burdened with the possibility of dad dying on his watch but it's 'fair' for YOU to be burdened every day? Think about that statement, and how silly it truly is.

I don't have 'the answer' for you.........only you can make the decision as to whether or not to go on this cruise and to allow your brother to take over for 3 weeks. You've been a care giver for your folks for a long time now and you are exhausted. "Being there" for a parent's passing is a necessity for some but not for others. You have been there when it really counted.........during his LIFE. When he needed help, when he had doctor's appointments and medical needs that you were right there to help him with. Day in and day out. When my father was on hospice and we knew the end was near, I actually left the ALF and went home. I could not watch my father take his last breath and I believe he did not want me to. I believe he wanted me to remember him during happier and healthier times when we laughed together, rather than to be left with a permanent memory of his struggle to breathe.

Whatever you decide, I'm wishing you the best of luck. Please don't accept a 'guilt trip' by anyone about your decision, either, okay? Whatever you choose to do is YOUR choice. You've already done MORE than most daughters have done for their parents.
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MargaretMcKen Jan 2020
Fantastic! Best wishes!
Find out if you can reschedule the cruise. A lot of times that only involves a small fee and you don't loose all that money.

I think it is unfair to make your husband the bad guy, you have been dealing with ailing parents for years, how was he to know that dad would take a turn for the worse now.

I am curious, is your brother intending to stay until the very end or will he be going home after his scheduled time is up? I ask because you are worried about leaving him alone at the end but, is it reciprocated? Some things can not be controlled, try to find balance in what you can control and not. It would be okay if he was alone with dad when this happened, as it will be for you if that is how it works out.

Call today about rescheduling the cruise and talk to your husband about what you leaving right now would do to you. After all these years he may or may not understand, but he's not a bad guy for needing a break.
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Judysai422 Jan 2020
Nope, cannot reschedule. We tried. I wanted to buy insurance, but Dh refused. It's really not about the money, but my need to be there when my dad dies.
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My question would be, if he isn't going to do the dialysis then why continue to take him to dr appts. A PCP can continue the testing. The man is 95! I wouldn't go thru dialysis either.

How often does he see a urologist? If he isn't going to do treatment for his prostrate, then I would cut down on those visits too.

Now your cruise. Take it. Your brother will be there. U can check in every day. If you find your needed home, u can always take a plane home from the next port of call. Talk to Dad about it.
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I agree with the "months to years" and as a nurse this is what I witnessed. This is something that cannot be predicted at all. There is age. There is underlying illness. What does your brother say? If you are going to worry the whole trip there is no sense going on it and having to pretend just because your husband NEEDS your pretense. I would do what makes YOU most comfortable and lovingly tell my husband that I am terribly sorry, but this is my beloved father, I am not comfortable leaving and would not have a good time. That I hope he will go on his own and enjoy every second of the trip, but that I cannot. You cannot possibly be there for everyone at once. You cannot send half your body with your husband and leave half home with your Dad and bro, so it is time to do what YOU yourself are best with in this difficult time. The sad truth is that your husband may come home to your father doing just fine. THAT doesn't change the fact that you would not have a good time knowing you were away and could not get back.
You cannot know. No one can help with this decision. Anything can happen. Or not happen. As I said I am a nurse. I saw patients threatened by doctors over and over again with "You will die without dialysis and it will be an ugly death". They were wrong on BOTH counts. Often they didn't die for some time. And almost always, with the help of hospice, it was not an ugly death, simply a "more and more tired" thing. Good luck. This is your one Dad. If you wish to stay with him in this time, and support your brother, I encourage you to. There will be other cruises (I hope). But you aren't god. You cannot miraculously be both places at once. Do it your way. Gently. With apologies. Your way.
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I can't say much for the prognosis but my dad's situation is similar to your dad's. But please think carefully s out going in the cruise. This is your dad in his last moments. I find your husband's reasoning cold. Please be there for your dad.
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I do not know much about this, however, my step father was diagnosed with renal failure 7 years ago, he has been on dialysis ever since, he is 90. The only thing I have been told is that when one dies of kidney failure it is peaceful death not a lot of pain, one of his doctors told me that. Perhaps if he goes on dialysis now it will extend his life.

Sending support your way!
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