Caring for the Caregiver

By Scott Westerman
Colleen and I recently learned that one of our good friends had been told those three words that make your blood run cold. “You have cancer”. Much has been written about how to care for a recovering cancer survivor. But there isn’t a lot of advice out there for those of us who are thrust into the role of caregivers. I wrote the following letter to our brave survivor’s spouse. She suggested that I share it with you.

The worst thing about this caregiver stuff is feeling helpless and alone. Here is the woman we love, suffering the unspeakable horrors that are necessary to prolong the quantity and quality of existence, and there’s not a damn thing we can do about it.

You will feel like you don’t know what to do to help her. That’s normal. Be present. Listen. Love. Do all those wonderful things you already do so well. Sometimes just being in the same room with her is all you need to do. Allow yourself to tell her that you wish you could make the pain go away and that it breaks your heart to watch her go through this. Reassure her that you will get through it together, that you’re not leaving, that she’s beautiful without the hair (she will be, by the way), that surgical scars are the decorations of victorious warriors. All the things you first fell in love with will still be there.

Your steadfast support will mean the world to her, even when the stuff that’s coursing through her body to save her life may make it impossible for her to express it.

Moods tend to become amplified during times like this, so don’t be surprised if the lows feel lower than you’ve ever felt. There will also be moments when you guys will also want to laugh so hard that your nose will run. Let the feelings flow, whatever they may be. Fully experience everything, the good and the bad.

You may think that you have to keep it together on the worst chemo days. That’s ok. Sometimes compartmentalization is, itself, a survival skill. But make absolutely sure that you find a place to blow out the emotions as soon as possible. It’s very easy to compress all of the bad juju on top of the lifetime of suppressed issues that you’re already pushing around in that invisible wheelbarrow that’s chained to your wrists. If you don’t take the time to bring it back up and process what’s hurting, your own body will react, perhaps in some very uncomfortable ways.

Allow yourself to fully feel, whenever you can. It’s hard. I still struggle with it and have to consciously force myself into the dark spaces to dig the bad stuff up and let it wring me out. I don’t like that exercise, but just like throwing up after you’ve eaten some bad pizza, it’s what your mind/body/spirit need to cleanse.

Don’t forget to keep that fitness program going at full throttle. Exercise is medicine. Eat right, even if the love of your life doesn’t feel like she can. I did a lousy job in that second area, because: 1) I can’t cook and 2) I’m too lazy to think about putting the right things together when it’s much easier to eat Pringles and drink Coca Cola. Don’t be like me.

You may not believe it now, but you have the strength to be the witness your woman needs to help her through this. And you have the courage to take care of yourself even as you take care of her.

And here’s another surprising thing we discovered. Your senses become more acute. The flowers will have more color. The grass will seem greener. The smell of the air in the aftermath of a rainstorm will be indescribable. These are things you will get to keep, even after you are done with this monster. These are cancer’s gifts: awareness, mindfulness, and the ability to experience the second life you will be given more richly than you could have possibility imagined.

And understand one very important thing: You don’t have to do this alone.

Find a therapist. There’s nothing better than paying someone smart to help you make sense of suffering. Everybody needs a shrink. Get one and unload your burden.

Some of your best friends may be uncomfortable walking beside you. This is a challenging experience and not everybody is equipped to cope with it, even from a distance. But other amazing people will appear at just the right time, with just the right mixture of empathy and honesty to renew your strength. These are the people you can flood with long, angry, emotional emails whenever you need to. They will take your calls anytime, day or night. They will do what you need most at a time like this; they will listen.

And, perhaps most importantly, it’s ok to reach out to those who have gone through this before you. No one can truly understand another’s journey until we’ve walked the path. Some may be less comfortable than others in reliving the ups and downs of caring for a survivor. But many will open their hearts to you. There is an unspoken bond you will instantly feel, an instant connection that can provide hope and strength to both caregivers.

Cancer was the toughest battle Colleen and I have yet had to fight. But it also turned out to be some of the most important, illuminating and loving times we’ve experienced as soul mates. I hope you won’t have to go through this. But if you do, make it the defining moment of your life. You will discover that the greatest gifts are not in the outcomes. They are found along the way.