The role of the caregiver from a patient's view

You have cancer.  You just heard the news, maybe an hour ago, or a day or a week, or even longer.  The shock has subsided, and the initial rush of fear, apprehension, and pendulum-swinging emotions give way to a more steadied (although not always healthy) mental state.  You look at the person who has been by your side this whole time –a spouse, parents, child(ren), or even a friend, whomever has assumed the shotgun role on your oncological ride.  Chances are, the person you are looking at is about to have the more difficult time during the coming stretch of cancer fighting. 

“OK, wait, so you’re telling me that the person WITH cancer has it easier than the person WITHOUT cancer?  Are you crazy??”  Well, yes, but hear me out.  A cancer patient’s mental state cannot be well summarized in a couple of blog sentences, but to generalize, a patient thinks:  “There is something wrong with me (and likely ‘seriously wrong’) and my body.  There is a variable chance of survival; I want/need to get better.  What can I do to heal myself?”   While overly simplistic, this thinking falls under the general concept of “get better or die”.  It becomes very VERY easy to stay focused on treatment and recovery when that is the endgame.  

The caregiver, however, has the same focus without nearly the same support or the same leeway.  Physically, they won’t go through the patient’s ordeals.  They deal with all the other stuff, though – the trips back and forth to the doctor or hospital, the stress of the unknown, the adjustments to new priorities, and the responsibilities of “real life” that get thrust onto them.  Often, they still hold down full time jobs and need to focus on keeping some kind of family life going.  They become the main conduit of communication to everyone, which is no easy task.  In short, they do almost everything else BUT get better, and they do it with far less support than what is offered to the patient.

The words of Herb Brooks from “Miracle” echo in my mind.  Brooks, after informing the tryout group who made the initial cut and who didn’t, tells the remaining 1980 Olympic hockey team hopefuls, “Take a good look gentlemen, ‘cause they’re the ones who are getting off easy.”   In a similar way, we cancer patients have it “easy” – or at least simple and straightforward.  Get better.  Take this medication.  Eat right.  Do this, focus on that.  Recover.   Our caregivers live in a world of uncertainty, not just about our medical conditions, but about the challenges tomorrow will bring and their obligation to keep as much off our plates as possible.  They shoulder many burdens, so that the cancer patient doesn’t have to stray focus from the most important task at hand.  It’s a thankless job that many accept as semi-permanent part of life.

If you are that support person, what can you do?  Well, first is to get your non-cancer priorities in order. Separate “task” from “priority” and make sure that high priority items are given the proper attention.  Cleaning the house is a task; paying the mortgage, giving medication at the right times, or getting the kids to school is a priority.  It will be tough to focus on things that suddenly don’t seem as important, which is why identifying the true high priorities is critical; otherwise, the sheer volume of “things to do” becomes overwhelming.  Second, find your support system.  Look for ways to cope with the curveball life threw you, because your future likely just changed, a lot.  If you need to, seek professional help, even if it is just to assist in processing everything.  Reach out to those handful of people you will lean on, and let them know how important they are to you and will be during your loved one’s illness.  Those people are dying to help, so enable them to do just that.

If you are not that main support person, how can you help?  For one, be conscious of the primary support person’s needs.  Become an outlet for them if needed, whether they want to vent, cry, blow off a little steam, or just sit and talk. Engage them instead of waiting for them to tell you how you can help; from personal and anecdotal experience, most patients and caregivers won’t reach out until they REALLY need something. 

Be passively persistent; you don’t want to overwhelm someone whose life is turning upside down, but pushing them to accept help may be necessary sometimes.  Proactively suggest something like “We’re going to set up a dinner rotation for you, can we start this week?”  This gets the caretakers involved, takes some mundane burden(s) off of them, and gives them a bit of control over something.  Our friends and neighbors both did this for us, and it was an enormous help.  This can work with many tasks – babysitting kids, giving rides to the doctor, going grocery shopping, walking their dogs, doing laundry, cutting the grass, etc…  If you look, it won’t be very hard to find some small way to help that makes a big impact when added together.

Finally, make sure your concerns are voiced for both the patient and their caretaker.  How many times a day does Jen hear “How is T.J. doing?”  Heck, I am getting sick of hearing about me, just from catching bits of conversations she has on the phone.  All of it is very well-intentioned, but imagine the mental drain that must come with constantly being asked about someone else.  How many times have you have asked a caregiver how their loved one is doing, but neglected to ask how they are doing?  

One more thing I almost forgot – if you are the patient, there are only two things you need to do.  Get better. And thank, thank, thank, and thank your caregiver.   Doctors may give you more days in your life, but caretakers make it possible to have more life in your days.  Without both, your chances and your life would be a lot more dismal than they currently are.   At some point, you’ve probably said some variation of “I can’t thank you enough…” but try and do just that.  They deserve it.

T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »