Surviving the Caregiver Role Caregiving Through Cancer Chaos
If you are a caregiver for someone with cancer, thank you. You are an irreplaceable piece of their journey. This is not a battle they should face alone. Remember to also give yourself grace because what you are dealing with can be traumatic too.
Your first couple weeks will be chaotic for you both. Neither of you have any of this figured out yet. There is not yet a routine. It is OK to focus on what matters right now, in the moment. The rest will fall into place.
Have patience with your patient. They are dazed and confused and are dealing with a life-threatening situation. Their behavior may, at times, reflect that. Emotions will run wild for you both. There will be times when you feel angry, resentful, unappreciated and terrified. These are all valid feelings. You do not need to “stay positive” all the time. Communicate your feelings with your patient and encourage them to talk to you as well. It’s emotional support for you both.
You will also get tired. Not the same as their fatigue but real, nonetheless. Don’t feel guilty about having to take some time to rest yourself. Needing a break does not make you a bad caregiver but will give you the strength to keep going. Your exhaustion may cause you to make mistakes, maybe with appointments or medications. It may also make you cranky. Sleep when you need to sleep. Take a break when you need to take a break.
Let people help you. The knee-jerk reaction from your patient will usually be saying no to any offer of help. They don’t want to be a burden any more than they already are. That means that you must be the one to say yes. You don’t have to do everything yourself. When folks offer help, they usually mean it. They want to do something, but they are clueless as to what is needed. You know what needs to be done, so you should ask for specific things. Give them choices such as bringing meals, come visit so you can take your much-needed break, do the dishes or clean the house, mow the lawn, drive. Whatever they can do, let them pick a specific task or two.
Cancer is changing who they are. They will not feel the same as they were before their diagnosis. Cancer will change the way they think (chemo brain). Things they loved before may now be only tolerable and they will notice the beauty in in things they never did before. Their taste buds will change. They will be learning who we are now for a long time, it could take years. Try not to pressure them to be the person they were before or to “go back to normal”. Be patient with them and accept their new insecurities while they work it all out.
There are things that the cancer patient wants you to know but they may still hide it from you. They may not know how to express themselves and will be worried about saying the wrong thing or asking for too much.
Here are some things that they want you to know.
· You don’t have to fix it. What they need is someone willing to sit beside them in their fear, anger, sadness, and uncertainty without trying to make it all go away.
· There will be many times when you don’t know what to say. Times when kind words, advice or reassurances don’t work. That’s OK. Just continue to be there and not abandon them when it gets uncomfortable.
· They are allowed to be terrified and so are you. They are allowed to be angry and so are you. Share those feelings with each other so that they don’t feel like they are alone.
· They are building walls to protect their emotions and will be hiding things from everyone. They will hide the extent of their pain, exhaustion, scanxiety, fear, grief and trauma so that no one else can see. There will be times when you will catch them smiling. This is their way of trying to stay in control and to feel normal.
· They will have days when being thankful is impossible. This may make you feel unappreciated. Their bodies are being poisoned, then healed, then poisoned again. They are handling this as best they can. They are grateful for everything you are doing, even when they fail to express that. Opposite of that are the days when they feel nothing but gratitude. Constant appreciation will get annoying too. This will ebb and flow, go with it as best you can.
· Their needs may change from day to day, sometimes hour to hour. One minute they want company and the next they need quiet and to be left alone. Sometimes all they want to talk about is their cancer and their treatment and other times they don’t want to even think about it and desperately need to talk about anything else.
· They do not have the energy they did before. They want to be social and they will try. They will accept invitations and then cancel at the last minute. They don’t mean any disrespect. This may go on for years. Please keep inviting them.
Keep showing up for them. They know that this is scary for you too. They see your frustration but don’t know how to help you. They are in survival mode themselves.
They do not expect you to have all the answers.
Hold them up when they get bad news and celebrate the good news with them.
They are trusting you, literally with everything and that is quite an honor.
I know how overwhelming these days can feel.
That’s why I wrote NOT BROKEN: The Unfiltered Daily Truth in Fighting Cancer. It’s the book I wish I had when I was trying to process the diagnosis and navigate treatment.
If this article resonated with you, you should read NOT BROKEN The Unfiltered Daily Truth in Fighting Cancer. The book goes deeper into the day-to-day realities of cancer with honestly, practicality, and without filters.
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