Longtime caregiver looking for support and coping tips

Not Scott, but someone who has had both caregiver stress and stress from my own illness. Oh, I tried the pretending route, and you are so right that it is EXHAUSTING - as much as the work of being the caregiver. I found one friend in whom I could confide. Not who I expected, but a rather new friend who had been through some issues herself. She provided that sympathetic, nonjudgmental ear (and shoulder) I needed in the moment. It allowed me to feel enough relief that I then was comfortable being among others. Her best advice to me was "Don't pretend you are fine, your friends know that you are not. Simply say things are very tough right now, I am really struggling. I NEED this break to feel that there is still something good in life. Can we please talk about _______ or something pleasant. If anyone wants to hear my tale of woe, give me a call later."
Wow! two friends called later to express sympathy, and one became my lifeline.
Can you think of one friend or relative who might be your listening ear?
Sue

Scott,

I admire your strength and positive attitude. I’m caregiver to my husband, who was diagnosed with bladder cancer in August 2021. Although it’s been only a few months since the diagnosis, I have been feeling so mentally and physically exhausted and overwhelmed. I’m hesitant to share my feelings with my close friends because I don’t believe anyone else needs this type of negativity. I pretend I’m fine if and when I have a chance to get together with them. But I’m really not okay.
My biggest issue was when he lashes out on me because of his stress and fear of cancer returning, as well as because he suffers from the side effects of treatments. I tried and tried not to take any of these personally, but it is very difficult at times simply because I did not do anything wrong and I have my own feelings too. I do put myself in his own shoes but I still find it hard to absorb at times.
How did you cope and overcome all of the above? I’m at a point where I don’t even want to socialize with my close circle of friends because I don’t want to pretend all is fine with me, yet I really don’t want to let my negative emotions out because I’m afraid my experience will not do them any good.

Thank you for listening.
JW

Hello @naturalebyjas Sorry for the delay in responding, but our daughter had surgery and I was pulling caregiving duties and playing Mr. FixIt for things she needed to have done, but can't yet.

I, too, as learned to be very guarded with my feelings. I believe this is one of those negative aspects of caregiving that are simply part of the package. In my wife's and my case, my reluctance came from two places, which may or may not apply to anyone else's journey, but I share JIC it can help others or perhaps others can relate.

First, I found many folks, especially close family, were fast to criticize my caregiving decisions, even though they were made based on my wife's express desires. I would bristle when I'd get criticized and then not be told why or what they thought might actually be a better path! I even had one of my wife's siblings tell me I should have let my wife die during her time in a coma.

Second, I also was told, or overheard folks saying I was 'complaining' when they'd ask 'how are you' or 'how are things going' and I'd actually tell them it was tough! I came to learn all most folks want to hear is 'We're fine!" do they can feel better themselves -- without doing anything!

These facets of caregiving were what drew me to Connect and their Caregiving community since it was far more nonjudgmental than those folks around me. Plus the isolation was broken through Connect. My wife's disease caused to her have many emotional and mental issues and this scared away the vast majority of our long-time friends -- manyfor several decades. In the end, my wife had one friend who stuck with her and I had one. Both were geographically remote, but we're very supportive and both never judgemental. In that way were very lucky. During those years I often recalled my father-in-law's old adage "if you can count your friends on one hand, you are truly lucky."

I wish you continued Strength, Courage, & Peace -- and remember superheroes only exist in the comics -- not caregiving!

Scott, thank you for sharing your experiences, I can totally relate to all of them. I’m glad I found Mayo Clinic Connect, where I can seek non judgmental advice from fellow caregivers.

I struggle everyday not only because of challenges in day-to-day caregiving, but also because of the fear of losing him , this fear paralyzes me mentally.

Reading comments from other caregivers somehow gives me a sense of relief, thank you to all!

Hello @naturalebyjas Sorry for the delay in responding, but our daughter had surgery and I was pulling caregiving duties and playing Mr. FixIt for things she needed to have done, but can't yet.

I, too, as learned to be very guarded with my feelings. I believe this is one of those negative aspects of caregiving that are simply part of the package. In my wife's and my case, my reluctance came from two places, which may or may not apply to anyone else's journey, but I share JIC it can help others or perhaps others can relate.

First, I found many folks, especially close family, were fast to criticize my caregiving decisions, even though they were made based on my wife's express desires. I would bristle when I'd get criticized and then not be told why or what they thought might actually be a better path! I even had one of my wife's siblings tell me I should have let my wife die during her time in a coma.

Second, I also was told, or overheard folks saying I was 'complaining' when they'd ask 'how are you' or 'how are things going' and I'd actually tell them it was tough! I came to learn all most folks want to hear is 'We're fine!" do they can feel better themselves -- without doing anything!

These facets of caregiving were what drew me to Connect and their Caregiving community since it was far more nonjudgmental than those folks around me. Plus the isolation was broken through Connect. My wife's disease caused to her have many emotional and mental issues and this scared away the vast majority of our long-time friends -- manyfor several decades. In the end, my wife had one friend who stuck with her and I had one. Both were geographically remote, but we're very supportive and both never judgemental. In that way were very lucky. During those years I often recalled my father-in-law's old adage "if you can count your friends on one hand, you are truly lucky."

I wish you continued Strength, Courage, & Peace -- and remember superheroes only exist in the comics -- not caregiving!

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 day, @tim1028 Your post, to me, is spot on! So much of 'talking' is listening and this is especially true for caregivers! So often I wished for someone to actually listen to me rather than zone out when I didn't respond with their desired answer of 'fine' when I would be asked 'how are you?'

I suspect many folks are afraid to actually listen to caregivers since they worry they won't know how to answer or be able to help, but for me often the help was just in being able to speak my concern out loud! I also believe this was why I was hardly ever asked how I was (as the caregiver) by the myriad of doctors who cared for my wife over the years.

I also loved your white water rafting allegory. The last rafting trip I took (on the Upper Gauley in West Virginia) I almost drown and had to be rescued along with another of our party. This after years of rafting and countless trips. I can't tell you how many times I felt like I was drowning as a caregiver!

Strength, Courage, & Peace