I feel like I’ve taken my caregiver for granted. I know he is always there, waiting to please me. Always aware of my struggles and trying to comfort me in every way he can, even when he himself doesn’t have the energy to invest and may feel more fearful than I do. But he cares. A lot.
My caregiver is also my partner, so he plays two roles simultaneously, although sometimes it feels as if he is more of a caregiver to me. After dealing with the trauma and collateral damage from cancer treatments, navigating the relationship can get complicated. There’s been some loss of identify for the both of us.
I’ve never really taken the time to fully understand the scope of his responsibilities – those he has created for himself and has committed to — and the complexity of his emotions because I am too busy trying to deal with my own. I know that being a caregiver is no easy job. He has sacrificed a lot for me. I am so grateful for him but I also feel guilty because I am not able to be there for him as much as he is for me. I depend on him emotionally a lot of the times, and he is so focused on me, but I haven’t been able to offer the same level of support.
Intimacy also feels weird for the two of us (Tamoxifen is no help). We love each other. That is not the issue. The issue is we’re traumatized from this cancer experience that hasn’t gone away for either of us. We want to feel normal again. To be OK with the realization that things won’t be back to the way they were. We shelter ourselves together, but creating a safe place has become challenging.
And I worry about his state of mind. Lately, I’ve noticed the emotional changes in him. He is not doing too well. There’s just too much going on all around us. Too many problems to solve. Too many losses. Too many forced/unwanted changes. His fear of losing me too soon has impacted his mental and physical health. And still, he chooses to stay.
I started to notice his debilitation this past summer. I’ve noticed his teary eyes from time to time. He is not only aware of my health, but he also knows about my friends – those who are stage 4. He is the one I can turn to right away to talk about everything, including my worries and sadness. But he has no one to reach out to. My caregiver/partner is the isolated/quiet type of guy, always keeping things inside. This doesn’t mean he is not crying out for help.
I am no help. It’s hard for me to keep things to myself. I know other patients can hide their true feelings and keep some upsetting news to themselves so as not to overwhelm their loved ones. It’s not like I express every single thing that’s on my mind and heart, but I say enough to make him worry or upset him. Having cancer has become too casual for me. It’s just the way my situation played out. In a way, I think expressing myself is healthier for me, but it might not be necessarily healthy for others (and it’s hard to keep a balance). Sometimes I catch myself saying insensitive things to him, like, “you should be used to this life by now” or “come on, learn to look at death in the eye.” It’s horrible. I know. Sometimes I feel cancer has turned me into a jerk. But in reality, I am really telling those things to myself.
I think as a caregiver he knows and understands my frustrations. He knows I never mean to hurt him. It still doesn’t excuse my behavior. I need to be more mindful when I express myself to him. I mean, just because he appears to be strong, for me, doesn’t mean he isn’t broken. How can I help put the pieces back together when cancer will always be part of our lives?
But I can’t possibly expect him to get used to the idea of losing me forever. It’s irrational of me. I know because I’ve gotten a taste of his fears, from a caregiver’s perspective. Recently, he has been experiencing health problems. I’ve been worried for him and when I imagine the worst (you can’t blame me), I get really anxious. I can’t imagine losing him either. Just the thought of it hurts. A lot. And to think this is how he feels a lot of the times. Being a caregiver is no easy job, even when it’s done with unconditional love.
I am a realist but maybe I should be more selective of the things I say. Let me give you an example:
My caregiver never misses my Dr.’s appointments. He dresses up for them, too. “You don’t need to dress up! We’re just going to my appt,” I say to him. “It’s a very important appt,” he replies. He says I love you and I am here before I head into that…oncology room. And when I come out, I can see the anxious look on his face, wondering how everything went. “My mammo was clear…for now” I said to him recently. He doesn’t need to be reminded all the time that there’s no cure for BC. Did I really need to say “…for now” when referring to my clear mammogram results? He is aware of my reality. Perhaps I should let him enjoy those few moments of good news. And what the heck, I should enjoy them too. And I really try.
When he received the good news, he took a deep breath and held my hand. It’s amazing what a piece of good news can do to his state of mind. I immediately noticed the difference – I see momentary relief and hope. We both try very hard to hold on to those moments. However, I think the stress that has accumulated these past years since my diagnosis has caught up with him. And me.
Just like we patients are never done with cancer, the job of a caregiver doesn’t end either, especially when they are emotionally connected with the patient. They suffer with us.
I am not sure what the solution to this survivorship challenge is. All I can say is that I am aware of his unconditional love for me. And that I am so grateful for him. I also know he’s hurting. At times I wish he was not in my cancer mess. He should be in a healthier and happier situation. But he loves me. And I love him. All we can do is continue to hold each other’s hand and hold on to the good news we get and enjoy them for as long as they last.