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Longtime caregiver looking for support and coping tips

Caregivers | Last Active: Apr 29, 2023 | Replies (85)

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@IndianaScott

Hi @tim1028 Nice to have you here in the Caregivers group! Glad you posted. I'm Scott and I was my wife's caregiver during her 14+ year war with brain cancer. Your post brought back many feelings from those years for sure. Being exhausted and empty was one of the toughest aspects of caregiving for me. It is a relentless undertaking and I wish I had some magic potion to share with you.

My dad was an alcoholic and one of the things that helped me with caregiving was from his 12 Step program and that was "one day at a time". I had to refocus my life from longterm to one day at a time. That helped me with the feelings I was having of being overwhelmed.

Also I had to teach myself that noncritical aspects of daily life could be allowed to go to the wayside without feeling any guilt. I learned to get along with a constant pile of laundry to be done, shirts that no longer got ironed, and looked at dust bunnies as a new kind of pet rather than a pest to be worried about.

I also printed out and taped a quote up in our kitchen which says "Courage doe snot always roar. Sometimes courage is the quiet voice at the end of the day that can only manage to whisper 'I will try again tomorrow.'" It helped me realize just trying was often the best I could do.

I had to chuckle at your comment about taking care of oneself! If I had people tell me that once, I had them tell me that a million or more times -- and every time they did it made me beyond crazy! Do people think just because a person is a caregiver they don't want to take care of their own needs too? I support that comment might have made them feel like they did something, but it surely didn't. At least for me, it didn't!

Caregivers can only do what they are able to. None of us are superman or wonder woman.

I am happy to answer any questions you might have about specific things or aspects of caregiving to help!

Strength, Courage, & Peace

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Replies to "Hi @tim1028 Nice to have you here in the Caregivers group! Glad you posted. I'm Scott..."

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

I love this. I am going to print it and tape it to my bathroom mirror. I was caregiver for my MIL/Step-mother (yes she was both) for 7 years before she died with LBD. Now I am care-giver to my father who has been dealing with metastatic squamous cancer since 2020 (moved in with me after two months in the hospital) and my mother, a heart patient. I have managed to keep it all in balance except with crisis spikes, but after heart surgery in October, my mother has become confused and combative. My brother lives in the Pacific NW, and is here periodically when work coincides, but well, he works when he is here. My husband helps tremendously but the burden is real. I have been grounded. My freedom is gone. I have many health challenges of my own, (including RA/OA/PSA, Asthma, and chronic migraines) but taking care of myself is dependent upon the happenstance well being of my charges. I had severe COVID for three weeks, beginning in late January and if I had not been critically ill it would have seemed like a relief, to give up all the "have-tos" for three weeks.