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?
Enjoy your cruise.
THanks to all for your input.
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.
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.
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.
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.
Sending support your way!