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Longtime caregiver looking for support and coping tips

Caregivers | Last Active: 6 minutes ago | Replies (102)

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@tapestry4245carton

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.

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Replies to "We are in the midst of a complex stage of "treatment" of my spouse's prostate cancer..."

You have a very tough situation. Prostate Cancer treatment is difficult enough (been there, done that) but with all the terrible side effects, complications and other issues, it sounds like a real nightmare. The solution for me has been Acceptance I may not like it, but I have to face reality as it is. The next step is what can I do to solve the problem, or not? Seemingly intractable situations like you face can sometimes be approached by asking for help from hospital staff, including social workers, who are there to sort out some of the issues you address. Your post is more generalized and as Becky has mentioned, specific examples may be more useful to suggest remedies.