Feelings of...........selfishness
I'll keep this short (probably). I was going to write guilty, but selfish seems more fitting. My wife has been battling stage three breast cancer for just over a year. She was diagnosed on Valentine's Day 2022. Done with chemo, done with radiation, taking Anastrazole for 10 years, almost done with gabapentin. She tried twice to start Verzenio but could not tolerate the side effects so she's off that, but still going through hell with lingering side effects. Before all that, she had Thyroid cancer (2021) and went through all the emotions associated with that. Prior to that, way back in 2005, she took a bad fall down some icy steps on Thanksgiving day, had 2 foot surgeries with not great results, and now has mobility issues and is officially disabled. I have been her caregiver through all of this and I'm happy to be the one helping her.
So there's that. Then, both of my parents have varying degrees of dementia/Alzheimers and need a good bit of help That also falls on me due to one of my brothers not communicating with family and the other one tied up with eight kids of his own, and currently down with Covid. Additionally, my brother-in-law is in the hospital for alcoholism and has been given 4 months to live. There's nothing I can do for him, but my wife is expecting THAT phone call one of these days. AND, my best friends dad was just diagnosed with bladder cancer. Again, nothing I can do there, but all of these things get stacked onto the big, steaming pile of things that are on my mind. Heavy, serious, grown-up things that I wish none of us had to deal with.
So here's the thing. As the healthy one in all of this, I realize I need to take care of myself in order to be there for the ones who need me. That's been repeated over and over in all the media outlets. Caregivers must take care of themselves, etc etc blah blah blah. But I'm having a hard time getting past the mental challenge of doing that. My favorite (and only consistant) form of excercise and enjoyment is bicycle riding. Great for the body in every way. Muscles, lungs, vitals, mental clarity, and emotional well being. My problem is trying to justify going out and having a good time while every person I care about is suffering, unable to do the things they love. That's why I feel selfish. I know that's rediculous. But there it is and I can't shake it. My wife and parents encourage me to go do things I enjoy, so it's not like I'm doing things for me when I should be there with them. I have their full support. But it's tough. Doesn't seem fair that I get to have fun and they don't.
I will work through this on my own, but if anyone has some real-life caregiver experience with feelings of selfishness or guilt, and how to move past it, I'm all ears. Thanks so much.
Mike
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I’m in an interesting position as I have fought cancer but also have been a caregiver to a loved one with cancer and a support person to my friend’s husband who is also battling cancer. We are not elderly. We are all on our 40’s. My dear sister has late stage ovarian cancer. I helped care for her after her surgery and during her chem. then 6 months later I was diagnosed. And my friend’s husband has early stage pancreatic cancer. Both my sister and friend have terrible survival rates. My dear sister has been my best friend and soul mate. We supported each other through cancer and everything that came before. Now I’m NED but she is not. Infact she in contemplating quitting all treatments. It’s been hard to manage the feelings on both of our ends. While we are still close without a doubt cancer has sort of come between us. But I have not let that stop me from enjoying my life even though my heart breaks for her. I wish things were different. All I know is that I have to make whatever time left I have on earth to be good for me. My husband and my kids. I know it’s hard but go on that bike ride. I went on a six mile hike this morning and it felt incredible. No guilt.
Take care
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@monarchandthemilkweed It IS a difficult balance. However, SO important to take care of yourself, and enjoy your moments of joy. This gives you happiness as well as the energy to be there for others. We're here for you!!
🤗
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I was in a caregiver role for a number of years (dementia, not cancer) and it did come with a lot of guilt - maybe because I could always conceptualize what more I 'could' be doing that I wasn't, and felt a lot of empathy for the (lack of) quality of life that my parent seemed to be experiencing.
Some things that helped:
The book "Loving What Is" really helped me reframe and refocus from my energy. It seems and maybe is a bit hokey, but it helped me.
The philosophy of Levinas, particularly the idea that we owe basically infinite care to every other precious human being, and the condition of being human is that it is literally impossible to fulfill that obligation and instead we are in the excruciating position of weighing and judging between needs and between infinitely precious human beings (including ourselves). On the one hand, it sounds depressing. On the other hand, it was liberating. There is no winning hand, there is just recognizing that the task is impossible and doing what we can anyway.
The idea of over empathizing. Empathy is good, compassion is good. But we are no good to others when we literally put ourselves in the position of feeling their pain. We just have two people in pain instead of one. I was not doing anything for my parent by feeling sad for them, and in some ways I was doing less for them to the extent that it impacted my ability to interact with them as they were and to have positive energy to show up for them.
People around you are suffering, and that sucks. Your suffering won't make it better. Chances are that your turn to suffer is coming. Save that suffering for another day when you have no choice.
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I've cared for my dad who has AD for 10+ years and now my wife has diagnosed with Stage1A cancer.
The guilt is unfortunate (and probably due to upbringing - I know in our community we get a lot of guilt heaped on us) but you do need a sense of hope, joy even, to be able to continue supporting all the sick people in your life. And thus you need to live a fulfilling life. The happier you are the better you can take care of them.
I've actually started exercising right after she got diagnosed as I wanted to be at peak performance when things get stuff.
I've been through this - the worst and most useless thing was to feel guilty. Make sure she is okay and go do something you love and keep your mind happy so that you can support her!
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I appreciate everyone sharing experiences. It helps me greatly reading others’ different, but relatable experiences. I do my best to be primary caregiver, good husband and father. I always feel like I am treading water. I have always felt uncomfortable expressing myself with people close to me. It’s an mixed bad of feeling selfish, not wanting to put myself first and just little embarrassed that I struggle. I am getting to the point where I feel like I am running out of gas in the tank. I joined site to get insight on how caregivers balance everything.
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Hi @tryingtodeal123,
Understandable. A lot of folks experience difficulties with asking for help, especially when it comes to caregiving for someone diagnosed with cancer. We're glad you have taken the first step towards finding support for yourself though! It's hard to care for someone else when you aren't able to get your own needs met. What stage of breast cancer is your wife diagnosed with?
Here are some resources for caregivers that you might find helpful in the meantime:
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