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.
The small c 
Yes. Thank you for writing this. Reminds me that I could definitely afford to spend some time writing about/appreciating my caregiver, too.
Our caregivers are underappreciated sometimes, by most people, not just us. They too deserve a lot of love and support.
Dearheart, if he is willing, he should subscribe to a caregiver/carepartner group. It’s a lively bunch, and we (I am both a carepartner and a double cancer survivor) feel safe to vent, and share our feelings in a protected group. It is always easier when we find a path before us has been already taken by so many, with so much sage advice!!!
Kathi, thank you for the great tip. I’ve mentioned this idea to him before but somehow hasn’t committed to doing it. I believe it’s more challenging to convince men to do these types of things (or anything medical?). Hopefully, the days will get a bit easier now that we’re both aware we need to make some changes and create a better environment/situation for ourselves. And focus more on the things we have control over.
That’s a great idea from Kathi Marquart and this is a wonderful posting Rebecca. I’ve felt the being a burden thing and watched it turn into an investigation of my worthiness to receive care when I’m not really all that lovable or fun to be with…
So how about this beautiful story of care for your caregiver could include a sequel where you dive into the bliss of being needed? Giving care and taking are forms of gracefulness and this makes me think of the contributions you BOTH bring to the relationship, and also how illness can starve us of the NEED to offer care or to feel useful. How do we add balance back into our relationships when we feel like all we do is take?
Watching someone who is ill creates a sense of helplessness that is at least partly relieved by being useful. What if being sick and unquiet about it is also a tonic for helplessness?
Sunday Sermon is over:-)
Hi Scott! I think you’re right, our caregivers do find meaning when caring for us (aside from being an act of love). I’ve been a short-term caregiver and found it very rewarding. It was also emotionally exhausting. But that job ended for me. My guy’s role as a caregiver is a full time job. This sense of guilt I feel sometimes has something to do with the fact that my caregiver is also my partner. I want him to feel less burden with my health situation. He always tells me this is where he wants to be (stubborn he is!). I appreciate his level of commitment. We have to find a sense of balance. Thank you for your analysis which made me think and see beyond my understanding of the situation.
So much of this resonates with me. Thank you for reminding me that were are not alone. We’re all in thistogether.
We sure aren’t alone. And it feels good to know that. I hope each day is a little easier for the both of you. Finding a sense of balance is key.
Found this today:
The Greatest Definition of Love
https://www.brainpickings.org/2015/01/07/tom-stoppard-the-real-thing-love/
Thank you for the article, Scott. I’ll check it out.
Hi Rebecca,
This is an excellent post on a topic that doesn’t get discussed often enough. I fear I, too, take my caregiver for granted far too often. Cancer takes a toll on relationships. It just does. And not just when referring to our significant others. However, our significant others really take a wallop. It is hard for them, too, and the whole ordeal never ends for them either. Dear hubby worries a lot about me too. Usually he keeps this to himself, but once in a while a very telling comment slips out. Thank you for reminding me how hard this is for our dear ones too. I’m glad you have someone special in your life who cares (and worries) so deeply.
Nancy, we do this unintentionally. And I think our caregivers know it. Part of the problem is that they are the only ones left to help us put the pieces back together. Most people (not all) think we’re done with cancer and are ready to move on. Our caregivers are the only ones who can witness our frustrations and disappointments with these people who no longer want to be reminded of our reality. We lean on them. Our caregivers live in our reality, by choice. In general, I believe men are more reserved. Maybe this is why it is difficult for them to seek help. I am also glad you have a husband who loves you. We are grateful and very aware of their love and care.
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I confess I put off reading this, as someone who is basically a professional/paid caregiver. It can be draining. And I notice it in my client’s other caregiver, her husband. Caregivers live along with patients, from doctor appointment to appointment, or in my case, my whole day is structured around a schedule of meds, PT visits, so on. It can become your life! So my life is a weird mix of having one foot in cancerland and the other in Lyme world.
It has been weird to see this from the “other side”. I mean, I was a patient and had a caregiver or two, and now I’m the giver. Most days I’m too tired to give it much thought. Hmm, maybe, someday.
Anyway, great piece–how lucky the two of you are to have each other.
Wendi, your job is important and rewarding. It’s a very humane thing to do. I personally don’t think every single person can do it. And having gone through an illness probably gives you a different perspective (this was my experience). Wondering if it makes a difference which role comes first. And yes, I def. feel lucky to have someone with so much patience who cares. It’s kind of you to do the same. Remember to practice some self care too.
You have a good one. Having someone who cares so much about you to stay through everything, the stress, the tears, and the pain. There are may that can’t handle it and bail. I am glad you have each other. Hold hands, enjoy great news. ❤
Mandi, I feel very lucky. If I could run away from myself, I would, so I am grateful he sticks around for me. It def. makes this life a little easier when you know you are not alone. Your support helps too. xo
What an incredibly honest and moving post. Your caregiver might benefit from a caregivers support group — there are many good ones out there. Don’t be hard on yourself; you are human, and he is too. You are both doing the best you can to cope. That’s all one can do in this lifetime is try to cope. Excellent, thought-provoking post.
Hi Beth, I’ve advised him to seek help through support groups. I am aware there are quite a few options, but guys tend to be more reserved (at least that has been my experience). I need to keep reminding myself that I am doing all I can. We, as a couple, are doing our best. It’s not an easy life but at least we have each other. Thank you for your kind words. xo
It’s a hard situation all around. I am glad, though, that you have someone in your life who loves you so much that he suffers when you suffer. I hope it gets easier for both of you.
Eileen, thank you for your kind wishes. It sure makes a difference when someone is present and understands. I hope you’re doing well. xo