After my husband died of pancreatic cancer, I created a foundation in his name. I did this because I refused to let his death be in vain, and I wanted to try to find a way to directly help other pancreatic cancer patients. I do not regret it for one second, but by doing so, it keeps me in the center of all things cancer, which includes following the stories, and sometimes having to process the deaths of people near and far who I have come to love. That part sucks. I can tell you that. I am frustrated and angry with cancer, but I am so tired of losing my friends.
Last week, we received another devastating blow. Another friend dead because of pancreatic cancer. I grieve with his family, and it has brought up so many difficult memories. Memories and facts that maybe I wasn’t totally prepared to talk about before, but I am now.
This article is for the caretakers who are left behind. Those amazing, beautiful, selfless souls who dedicated their lives to the welfare of another human being. The superheroes behind the scenes. The men and women who sacrificed everything in their own life to try to save the life of the person they love. I want you to know how much admiration and respect I have for you, but I also want you to know this:
Nobody will really “get it” unless they have done it.
People might say they do, but nobody will truly understand what you did, day in and day out unless they have done it themselves. You’re not a nurse, even though you might have been acting as one, but caretaking goes so far above just caring for somebody physically. I know how much you have worried, how many questions you have asked, how many doctors you have talked to, how many sleepless nights you have had, how many times you have questioned your decisions, how many food recipes you have tried, how many supplements you bought, how many personal events you missed, how many times you have told your friends, “I can’t tonight,” how many trips you didn’t plan, how many excuses you’ve made, how many specialists you sought out, how many emails you’ve sent, how many times you have slept on a chair in a hospital room, how many times you have stayed up all night watching them breathe, how many times you felt foggy and exhausted because you forgot to eat that day, how many times you memorized their face in case it was the last time you would see it, how many times you cried yourself to sleep, how many times you have said you were “fine,” how many times you felt like you could not do one-more-thing, how many times your stomach has cramped because you’re not drinking enough water, how many times you wished you had an answer either way – good or bad- and felt guilty about that, how many times you didn’t wash you hair because you didn’t have enough time or energy, how many times you have thought about what life might be like if you weren’t doing this, how many times you have prepared yourself for the worst, how many times you caught yourself dreaming about the best outcome, how many times you cursed the universe and how many times you just wanted to sleep and felt guilty about that, too. I get it. I’ve felt every single one of these.
I have felt good, I’ve felt bad, happy, depressed, relieved, motivated, tired. I have felt like we were going to win, and I have felt like we were going to lose. But, the person who has never done what you do, sacrificed what you have sacrificed, lived the life you have lived, will never understand. It’s not that they don’t want to try to “get it.” It’s not that they won’t support you the best they can. But they will never be able to internalize what it feels like. Consider talking to other caretakers about how you feel – somebody who really gets it, while reserving other stuff for other people. People want to help. They want to feel needed. They want to do what they can do. They just sometimes, have to be assigned the right tasks. But as people are really trying, give them grace when they fumble and make mistakes.
Speaking of Grace: As caretakers, we are often telling each other “give yourself a break.” Whether our person is alive or passed on, this is one piece of advice that is constantly handed out. I nod every time I hear it but inside, I just laugh and laugh and laugh and then laugh some more. Heck, I have even said that line to people, but I mean it differently than the way it’s meant. When I say it, I don’t mean “sit on the couch, put your feet up, break out your bon-bons and tune out the world” (even though you should). What I really mean is, “give yourself some grace.” I know who we are. I know our personality types. I know we’re not going to literally “take a break.” It’s not who we are. We are on the go all the time, and if we’re not organizing something, we’re worrying about organizing something. It’s too hard to sit down. It’s too hard to shut our minds off. It’s too hard not to figure out the next step. We’re going to be tired. We’re going to be cranky. We’re going to change the way we think about certain things. We’re going to care less about certain things now and care more about others. We’re going to forget things. We’re going to buy cupcakes for our kids’ class instead of making them. We might even forget to buy them. We’re going to cry at commercials because we’re overwhelmed. We’re going to be snippy sometimes. We’re even going to sometimes wish it wasn’t us. Yep, I said it. We are sometimes going to wish it was not us. And, boy, we’re gonna beat ourselves up for that one. In that moment, in that awful, guilty moment, you must learn how to give yourself grace. You have to. You have to let yourself feel what you feel, and then forgive yourself. You have to give yourself a break. That kind of break. It is ok, and completely normal to feel that. It is ok to feel it all. You are dedicated and committed to a scary, uncertain, and possibly sad journey. Give yourself some grace. Feel the feeling and move on. Process it and then put your head back in the game. Don’t get stuck there. You can, and you will do it and you will be ok.
If it’s over: I am not saying that your loved one won’t be successful in their battle. Please don’t read into this. But, for those of you who have lost them, this is for you. I am mad at myself that I felt a tinge of relief when it was done. I don’t even like talking about it. It makes me feel gross. I actually hate that I felt that way. My husband, the man whom I loved almost my whole life died and there was a flash of a moment where it was a relief. I can tell you I felt that way because he wasn’t in pain anymore, or whatever smoke I want to blow up your ass but the truth is, I was relieved that we finally had the answer. For so long we were living in limbo that the limbo was killing us faster than the cancer. I remember him telling me once, “I don’t care if it’s good or bad, I just want the answer.” It was the not knowing that was so hard. It was the constant wondering that was so hard. So that last week when we were in the hospital, and he was struggling so much, and nobody knew what to do or what was going to happen, I just wanted it over. I wanted it over for him, and I wanted it over for me. Call me selfish, tell me how awful I am – I don’t care. You can’t say anything to me that I haven’t already said to myself. You can’t beat me up more than I already have. The last few days, I begged the doctors to do something. I wiped his brow. My daughter helped him drink iced tea. We went through the motions but I knew he was dying. I asked them to start chemo anyway. I prayed. I cried. I froze sometimes, but I wanted them to try everything. I had hope. I reluctantly signed a DNR only because they told me CPR would kill him anyway. I still hate myself for that. I still wish they had brought him back and kept him alive until they came up with a treatment or even a cure. I can’t stand how I felt in that moment. I even talked to his other doctors, other oncologists, and other surgeons after he died to ask them what they would have recommended. They all said that they would have let him go and signing the DNR was the right thing to do, but even then – I still hate myself for it. Yet, at the same time, when it was over, there was this awful, sick sense of relief. It was over. We didn’t have to worry anymore. We didn’t have to waste hope. We didn’t have to figure one more thing out. It was just over.
I just wanted to sleep. And I felt like the worst person in the world. The feeling didn’t last long but it bothered me that it was there at all anyway. But, since then, after talking to other caretakers, I have found that it’s normal. Can you believe that? Normal? All of these feelings, the confusion, the internal conflict – it’s normal. Apparently, you CAN feel a variety of emotions, even ones that don’t make sense. And then guess what? Even though you’re not taking care of them anymore, you still functioning in the same manner as you were before. Suddenly, you have a funeral to plan and finances to figure out and paperwork to do and you dive right into it because it’s what you do, it’s what you have trained yourself to do, it’s what you have been doing, and those people who have never done it wonder how you can be so callous and matter-of-fact, then the truth is – it’s all you know anymore. All you know how to do is to take control and do whatever you have to do. You’ve learned how to set your emotions aside and handle the crisis and figure it out step by step. You have learned how to function in chaos. You have learned how to take care of everything and everybody in spite of your fear, your sadness and your loss. And consequently, people will judge you. You will be ‘too cold. Too heartless. Too robotic.’ They will say things about you and whisper when you walk by because they don’t know. They have no idea. Pay no mind to those people. They have no idea, and I know you don’t want them to know what it feels like because then they will know what kind of life this is. Then they will know what this kind of loss feels like. I don’t wish that on anybody. Not even the people who don’t understand me. Nobody should have to live that kind of reality.
My dear friends who are still doing the selfless act of caretaking: Be proud of yourself. Know that what you are feeling is ok. Know that you are doing something that not everybody can do. But above all, be kind to yourself. Know you’re normal. And please, please give yourself a break.”
This story was written for Love What Matters by Diana Register, 45, of Meridian, Idaho. She is the founder of iam149.org, and is in the process of writing of a book about her journey with grief after her husband’s pancreatic cancer diagnosis. Read more of her work below:
SHARE this story on Facebook if you believe grief is easier when people are kind to each other.