Anger & Extreme Negativity Towards Caregivers
Where to start!
My brother was diagnosed with esophageal cancer last October and since then things have not gone well. The cancer did not respond to chemo and instead spread to his abdominal cavity and lungs, meaning it's inoperable. In January he was told he probably has two years with chemo to prolong his life, which was really a blow. Since he was diagnosed, my parents, my sister and myself have been providing as much support as possible in the form of just hanging out with him during the day (my brother has a tendency to spiral downwards when left alone), cooking meals, bringing him to doctors appointments etc. My sister cut her hours at work by 40% (and by extension her salary) so she could support him during the days after he receives chemo and his wife could continue to work. We drive 40 minutes each way to deliver home cooked meals and just generally be there for both my brother and his wife.
The challenge is really around how they are behaving towards us as well as the medical staff who support and care for my brother. After chemo the other day, my Mom & Dad drove 40 miles to bring over dinner for my brother and his wife, as his wife was working and we didn't want her to come home and have to make dinner. My Dad made a fire in the stove because the house was really cold. My brother also has a nurse that drops by daily to look after his medications, check vitals etc (part of medical care here). Well I hung out with them after everyone left (our parents and the nurse). All my brother and his wife did was complain bitterly about everyone and everything. Our parents are idiots. The dinner was awful. My Dad shouldn't have lit a fire. The nurse is a terrible nurse and horrible (she was very nice and professional from my personal experience). Our parents do nothing but fuss and are not helpful. My sister was there but when she is not there, they complain bitterly to me about her too.
This has been their MO ever since my brother was diagnosed - above is just an example of a regular day. Extremely negative and complaining about everyone. We are all aware of the way they feel about us and it's very depressing. I realize they are angry and have every right to be. I also realize everyone has their own journey and I respect that. I just feel that does not make it OK to be mean about everything that everyone is doing to help. It's making a very hard thing much harder.
Thanks for reading. Any and all suggestions are welcome!
Comments
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I understand completely. I
I understand completely. I have the same sad caregiver story. Its not easy living with someone and/or trying
to help someone who is depressed, lazy and bitter and appreciates nothing you do.With that said, my best advice is to take care of yourself and you seem to have a good support system. You have
your parents and your sister to help as well and when your feeling burned out, let them step in and help. I find
that I can only handle my wife's daily rage if I go to the gym and run. Take time off.0 -
sounds familiar -sigh-
tuscangal - golly, i can relate! that situation is the reason i looked for online forums and local support (groups and also one-on-one help from oncology social workers). i had NO idea that this sort of abrasive personality transplant happened with cancer patients. one oncology social worker calls it "cancer's dirty little secret". some chemo drugs magnify these cognitive issues. even w/o chemo, it seems to be part of the cancer experience. and it's not just cuz they're facing the end of their lives. there are truly cognitive changes in the brain. (thank you, Cancer.) it's similar to the nasty mean symptom of some forms of dementia. this same social worker told me that with everything she sees day-in and day-out counseling patients and their loved ones, she thinks caregivers are in the worse situation psychologically. she said if she had to choose to be the one with cancer or the caregiver/loved one, she'd rather be the one with cancer. THAT is how bad it is! so, clearly, you are NOT alone.
what you describe is exactly what i deal with day-to-day too. (my person is my best friend. she has no family so i'm "it" for her.) these cognitive symptoms reared their head about 5 months ago. some days are better than others, but the MO is still painfully abrasive, ungrateful, mean, and sometimes viciously cruel.
one of the things i find most useful - when i can actually achieve it - is to acknowledge her reality (even though mine is different) without trying to problem-solve or trying to show her that my reality is different than hers. it's almost like joining a child in pretending to be something different. here's an example of when i did a good job at it... i told her i ordered a new fireplace insert and was having it installed. she told me to avoid a certain fireplace store because they were totally useless and rude. (wouldn't ya know that is the store i did actually work with.) i asked what her experience was and she told me that she had gone into this FIREPLACE specialty a few weeks earlier because she was looking for a child safety thing for her WINDOWS. (in her case it's not for children, it's for cats.) she asked them about products like this and she was practically foaming at the mouth in anger as she told me "all they did was say they didn't have anything like that. can you believe that? i mean, they didn't even bother to show me their catalogs of things they could order or anything!" she was completely livid telling me this story. of course, i'm thinking there's not much they could do since they aren't a WINDOW speciality store. but i didn't want to say that to her because i feared that she'd turn her anger toward me. instead i just said "that sounds very frustrating". she vented a little more then got distracted by something and went off to focus on that... so, i dont' know whether you can find ways to let your brother know that you hear him and that his experience of his reality sounds frustrating?
another tactic that i'm finding helpful is making use of the fact that my person is easily distracted and gets hyper-focused on things. when she gets fired up or pissed off about something, i acknowledge that i hear her, then i ask a question about something important to her that i know will re-direct her. with her, i know that talking and thinking about her cats or landscaping is enough to get her going in a different direction. for hours. ;-) this is especially effective if it's something she can physically do rather than just think about. if he's passionate about cooking or painting or playing video games or playing cards - ANYthing that you can direct his energy to so that he drops the anger in order to focus on that other thing.
i'd highly recommend finding support in whatever forms work best for you: caregiver/loved ones support groups, one-to-one therapy, these forums, etc. i was pleasantly surprised to discover that there are therapists who specialize in working with cancer patients and their loved ones. i found some that even offer their services at NO COST! i've found this to be most helpful for me because i can describe situations and get help figuring out how to respond. i don't have to reinvent the wheel when it comes to navigating these relationship landmines.
it's absolutely AWFUL to experience this. there are some days when i think i can't take it anymore. there are days when i think about how relieved i'll feel when it's over. (then of course i feel like a jerk for thinking that way. then i remind myself others have felt the same way. etc.)
not sure whether my rambling helps. hopefully it does.
you're not alone. dealing with this cruelty is fairly common.
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