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.

@tapestry4245carton You do sound upset and frustrated. Your husband has been having serious treatments for his cancer and you feel like you’re coming up against a not-friendly bureaucracy. I was a hospital nurse for 20+ years so had to deal with this same bureaucracy, so maybe I can help.
Can you give me some examples of what has really bothered you?

There are so many worries when faced with loved ones with chronic long term diseases or effects from diseases. Living with someone with depression or negativity is very draining. My spouse is bipolar and there were many years I worried if I could stand one more minute. A quote from Beartown by Fredrick Backman, Chapter 9 really touched me today. “All adults have days when we feel completely drained. When we no longer know quite what we spend so much time fighting for, when reality and everyday worries overwhelm us and we wonder how much longer we’re going to be able to carry on. The wonderful thing is that we can all live through far more days like that without breaking than we think. The terrible thing is that we never know exactly how many.” I found I could always get through one more day. Eventually we come out the other side and can say we did the right thing.

@jprust I love the quote by Fredrick Blackman! So appropriate! And it’s nice to know that to worked for you and your husband.
Do you have the quote posted somewhere in your house?

I wonder if you would find it helpful to say to him that you don’t like it when X; it makes you feel Y. For me, being able to say something, regardless of the response, makes me feel a bit empowered.

I also wonder if you can walk away for a moment when X happens. For me, this also feels a bit empowering.

Hi, I recently joined the Mayo forum and sent out a few replies, but I think I discovered where I belong this morning when I stumbled into this conversation. I am 86, and LO is 94. After reading all the books, doing the community therapy groups, individual counseling, and farming out all maintenance and upkeep to the house, I am still stuck with the fact that dementia rules our lives. The only resources left are to dig deeper and take care of myself. Releasing frustrations on the Mayo forum has helped; those rare occasions when I can share something helpful are healing. -- I want to know how to find this group discussion again without a degree in computer sciences and a hit-or-miss search. Will this post do the trick? -- Right now, I eagerly await the removal of carpeting and tile installation in a 2-piece bathroom that has become my husband's favorite watering hole when there are more suitable options in the home. This is what is in my control in this situation. Also, out of my control is a return to communication in our home, so now meaningful conversations are with the Google Home system when I ask for an iPod or music. A subscription to Hulu has helped me from not losing my own sharpness which I do not take for granted. -- The most important thing I have learned, as we enter another decade with dementia for a roommate, is to understand, not intellectually but to the core of my being, that if I go down, he goes down. Sacrifice is hard-wired in most of us, but taking care of ourselves is not a rejection of that lofty principle. I write short stories and poetry snatched in minutes from busy days. I can share my efforts with the Writers Group at our Senior Center weekly if I am lucky. If life becomes hectic, they will wait for me until I solve or accept whatever is disrupting our household. Narrow as my life has become, it is workable. We all have to figure out what works for each of our varied situations. Just what you all wanted to hear, more of what you already know. Sometimes, all it takes is the boost of knowing someone else understands. GloRo

@gloro My answer, to your question of how will I find this discussion again, will bring you right back to this page. The answers that you provided previously were just great so keep staying withMCC and you’ll make more friends!
Do you have any help that comes in to your house? Any close friends? Any relatives? Any ways to get out of the house more often?
I’m also going to ask @lbrockme if she has any suggestions to tips that may be of help to you.
I do want to say that I can tell that you’re a strong and loving and caring woman. Just do your best. That’s all that’s asked of you!

What a wonderful focus you have in addressing and solving your household challenges. Dementia is so very hard. It can be very stressful ... and frankly full of grief for all that's changed.
You say you are connected to your senior center, perhaps they can help you connect to respite services. Just even a few hours a week , where you can focus on you and meeting your needs can be such a relief.
I'm hoping you are connected to someone you can talk honestly with , about your daily challenges. Just speaking about it can reduce your stress. You seem to have such a great focus on solving
your problems as they come up.
I love that you write. That's been such a release for me as well.
Have you ever considered publishing anything?
Keeping you in my prayers!

Good Morning, Thank you both for your kind remarks. I am a very lucky woman. I can't imagine handling the health issues that come with age, along with my husband's dementia and colostomy, without writing as a creative outlet and a release valve. And I don't have to leave home to do it. That is a perk. -- We are not completely on our own. My husband's son and wife, who live nearby, are a safety net if needed. So far, we have been able to live independently, with the exception of a few emergency situations. What social life we have is with them: high school football and basketball for my husband, and school plays for us both. I tease them that when the kids graduate, we will probably become hermits. -- However loneliness for me has been an issue. So, I write and get loving support at my Writers Group when I can. Facing an inevitable erosion of my abilities to keep this ship afloat, I have a lovely mother & daughter duo who do basic cleaning. And recently, the daughter has agreed to give me 4 additional hours twice a month. She is tackling all the things I have had to ignore. Also, she was once a caregiver to a young friend. The plan is for her to eventually become a caregiver to an old friend. -- When I read the situation others are in, I feel like a bit of a crybaby, but I have been where they are, and what peace I have has been hard won. I was spiraling into depression and scared when I joined Mayo Connect. Every like, hug, and response helped me to not let the depression get out of hand. This forum is a godsend since getting out with a walker with waning energy is a challenge. I am not complaining; it is just the price some of us pay as we are given more years than many. So, I think ahead of what the pitfalls maybe, not to prevent them but to make them easier to handle. Thinking ahead may be what brought on the depression, but not thinking about what is ahead and planning how to ameliorate it strikes me as being passive in the face of danger. -- I have gone on. It must be as obvious to you as it is to me that I appreciate and need this forum. -- GloRo P.S. I think publishing is on a bucket list. Hopefully, some day.

I love your spirit!
Look into self publishing! There are books about it. It might be an opportunity for you to step into a new phase.
I need to find someone we trust again, to help with the hard things
around here !
Keep up the great work! You inspire!