Longtime caregiver looking for support and coping tips

We are in the midst of a complex stage of "treatment" of my spouse's prostate cancer treatment much of which has happened at Mayo but some in our home state as well. Coordinating these is very difficult and has been a nightmare at times.

Most recently my spouse had a massive surgery at Mayo for what amounts to damage caused to his digestive system caused by radiation treatments. The surgeries took 7/8 hours in November and there were and are serious complications plus he has lost 80 Lbs.

So currently he is at end of Medicare deadline at a facility for one of many hospitalizations including a bout with septicemia which likely was caused by one of his many surgical procedures since August 2022.

My problem is "bumping up against rules" at facilities. I have found that at Mayo and all the other places where he has been treated have RULES and REGULATIONS that are heartless and cruel in my view and lack any compassion and there is little docs or hospital staff can do especially in light of the COVID aftermath.

We literally feel like we are "wandering in a wilderness" half the time in that all the staff everywhere are " burdened" by rules that prevent I believe there from being a true recovery of patients and create a massive burden on caregivers/family that is much worse than in prior times when this issue has always been present to some extent.

So what IS the solution? I am certain we cannot be the only ones experiencing this complicated and actually stressful to caregivers, situation? Communication in missing because if they told you how rule bound they are people might not get treated and instead Placating rules.

Reading this thread has been comforting to me in knowing others are in the same boat. And I have found some useful coping suggestions.

Part of the difficulty in caregiving for me is the changes that occur. Although it's the same in some ways, the varying demands and challenges can result in increased stress: physical, emotional and mental. It's kinda like taking a raft trip on the Colorado river through the Grand Canyon. The water can be smooth and peaceful in one stretch of the river, then change suddenly to turbulence when going thru rapids.

I've thought about the objection to the advice "Remember to take care of yourself" Perhaps a better way to address this would be to ask the person questions about how they are coping, what things they are doing to take care of themselves, rather than hand it out as a dismissive command, no matter how well-intended. Asking the person questions, gives them the opportunity to respond as they wish and personalizes the conversation by showing your genuine interest in their welfare.

Good morning, @naturalebyjas You are spot on! Caregiving seems to present daily challenges of one kind or another, often without respite. I shared your feelings of not only being challenged by the chores of caregiving but also the constant and terrible thought of losing my wife. I always knew the worst day of caregiving was going to pale versus the days without her.

While I know hints and tips don't work for everyone, but one thing that helped me through these thoughts and fears was to focus on "one day at a time". I had to retrain myself. Having spent my life looking towards, and planning for, the future, I had to learn to just be focused and OK with the day at hand. If I had my wife that day, I had to learn to be happy and not worry about what tomorrow might bring.

Please remember, no caregiver is truly alone! There are millions of us out there who are, have been, or will be caregivers.

How are you doing today?

I wish you continued strength, courage, and peace

Thank you
I find he hardest part is telling others how i actually am feeling - LOST, helpless, trapped,
and having an impossible time giving up gardening, and building, just don't have the time any more and am starting to see am running out of money slowly with many years left..

One day, one minute at a time and lots of tears

thank you all who share
feeling like I have already drown
Don