Being A Cancer Caregiver For My Father Without Parenting Him

Last summer when my dad was told that he no longer was having success with hormone-related medication to treat his prostate cancer, he knew he was basically opting for comfort care from there on out. That’s when he suggested that my boyfriend and I move in with him. With me working from home, I would be able to be with him almost all the time. He didn’t need much practical help, he just didn’t like being alone more than anything else. I had been helping to keep track of his appointments and medications, and attending his doctor’s appointments since his diagnosis. Even prior to him having cancer I’d often go along to his appointments because he has some reading, writing/spelling and communication struggles. I did little things like help him write checks from the time I was in middle school as a result of those struggles. So “helping” my dad with certain things has never felt like parenting him, to me – because it’s just been part of our relationship since I was a child.

Recently, I’ve realized that it’s really important to me that I never evolve into feeling like I am parenting him. For whatever reason, that’s just a value that is really important to me. I think in part it is because I am not a controlling person or bossy person, so I just don’t want the responsibility of making his decisions for him. But also, I feel pretty strongly that he wants to continue to make his own decisions. He’s as capable of making his own decisions now as he has ever been. Why would I step in to ‘help’ in areas that he doesn’t actually need help in?

I’ve noticed in other people that once a parent needs almost any level of caregiving, they do start to basically parent them. There starts to be a power dynamic where the caregiver feels like they can pressure the sick or elderly person into letting them have control. I’ve noticed this in relationships in my extended family once someone got sick. I’ve even observed it with strangers in public. Once in a hospital outpatient waiting room, there was an elderly woman in a wheel chair and her son in a waiting room. I didn’t hear what the woman said, but her son spoke with a raised and nasty sounding tone of voice saying something like “Mom, you ARE GOING TO do physical therapy. I drove you here, I waited on this appointment. You’re doing therapy so I don’t want to hear it.” His loud tone made me look up without really thinking about it, but I wish I hadn’t because his mother caught my gaze and looked embarrassed.

Of course, I have no idea what the rest of their lives looked like, how their relationship normally works, or what her health situation really was. Maybe that was really out of character for him and he just snapped or something. But even if it’s a bad moment, I feel that type of treatment of older people is just wrong and hurtful, the same way it would be hurtful to speak to a younger person the same way. It’s dismissive, condescending and disrespectful.

It is frustrating to watch someone you love make what you feel is a bad decision, but I feel adults should be able to make poor decisions if that’s what they really want to do…nobody should control them. In the past I’ve felt that my goal is to make sure my dad understands his options, but then as long as he’s informed about what he is actually choosing, to not try to sway his decision once he’s made one.  If I feel he’s making a decision based on misinformation I’ll try to help him understand the situation better. But when he knows the options and makes a decision I try to 100% respect it regardless of whether it is what I personally would do or not. I feel like I had my stance on this issue tested by life recently, and that’s why I realized how deep this value really is.

With COVID-19, my dad is high risk. His immune system is probably less than ideal because he’s had stage 4 cancer for over 18 months now. He also is in his 70’s and has COPD. I’ve been extra careful about trying ot be safe in public myself so that I reduce the risk of bringing anything home to my dad, and my boyfriend has done the same. Nobody from outside of our household has been visiting my dad. He’s only going to doctors appointments that can’t be done over the phone or can’t be pushed off. He has his home nurse come in once every three weeks, but that’s it. o I know that if my dad gets COVID, the odds will be that my boyfriend or I accidentally brought it home to him. That is a heavy burden that we try hard to avoid.

So now that my dad has gotten tired of us doing his shopping, and of not being able to pick out his own meat at the store, in particular…it’s been pretty frustrating for me. The fact that he wants to go into grocery stores right now is hard to accept. He was fine with avoiding stores for the first month or so, but once our state started asking everyone to wear masks, it seems that he thinks this is enough to keep him safe and to allow him into stores now. I think it’s actually only a little about the mask, and is more about growing tired of not shopping for himself. But it’s hard for me to accept. It feels like I feel more responsibility to keep him safe from COVID than he feels for himself and that makes me a bit resentful, frankly. It feels unfair that I drag this constant fear of bringing him home this virus and he doesn’t seem to even worry as much as I do. But he understands that he’s at high risk of dying if he gets COVID. And i’ve told him several times that wearing a homemade mask does not really protect him from much, that when an individual wears a mask, it does more to protect others than it does to protect them. He knows this virus is actively ‘here’ in our community too. But when I tell him that I don’t think he should go into stores he gets annoyed.

So I go into the stores with him and pick up the items he points at. I check out for him so he doesn’t have to touch the card reader. He doesn’t seem to mind letting me help in those ways. But he insists on going into the stores so he can pick out his own items. So I go along with it and try to not let myself see it as me “allowing” him to even though I know that if I really made a stink he would give in. Because i’m not his parent. I don’t want to be his parent. I refuse to parent him, actually. It’s not my job to “allow” him to do anything. I just hope that if he gets the virus I won’t have a change of heart and wish that I had pushed harder to try to do things ‘my way’. I hope I won’t twist that into being my fault or taking blame for his decision. I hope that if that happens I’ll be able to remind myself that I made this decision out of a principal that I felt strongly about…one that said he has a right to be his own respected person, to make his own decisions, even if they are ones that risk his life.

I didn’t expect being my father’s cancer caregiver to be easy. It would be easy to stay bitter about how unfair it is that COVID has added challenges to what has already been the hardest year of my life. There would be no point in that though. This is the hand we’ve been dealt and so we deal with it as best we can. I try to remind myself that’s all I can do. Follow my heart, do what I think is right, do my best. I’m doing that. So I can’t let guilt creep in.

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