Patronized by a Fortune Cookie

What not to say to a transplant caregiver.

Photo by KapturedByKasia on Unsplash

Saying the right thing to those who have reached a certain point in the life of a caregiver—in this case, for a liver transplant—has a lot to do with timing. What can be encouraging at one point may not be at all helpful at a different stage.

I am so beyond cheerleader encouragement at this point. Not that I don’t have hope; not that I don't know that it will get better (for some caregivers this is not true). But today, my Panda Express fortune cookie missed that mark. So badly that I have laughed about it at random times all afternoon.

Before I get to the punchline, let me talk about caregivers. Every week, sometimes twice a week we gather alongside our loved ones. Sometimes caregivers push wheelchairs; sometimes they carry THE notebooks and meds. If someone is completely ambulatory without a wheelchair, walker, or cane, it is a reason for celebration. We all line up waiting for the lab to open and greet those we recognize as fellow transplant recipients and caregivers. And then we wait for appointments.

There is a look that caregivers exchange. For one brief second, we exchange a look that acknowledges our exhaustion. In the beginning, it was physical exhaustion but as our loved ones improve, it is the seemingly endless daily focus on doing everything correctly—especially the meds—and waiting for life to begin again.

At eight o’clock, alarms ring throughout the waiting area reminding us that it is morning medication time. Suddenly, pill bottles, medication trays, and small containers of pills surface. Most transplant recipients are taking 8 to 10 pills. We wait for the three-month mark when some of them will stop. The anti-rejection meds are for a lifetime.

Today the conversations in the waiting area turned to boredom—a sure sign of healing. The patient is bored; the caregiver is bored. And neither one has the strength to find a way to climb out of the monotony—we have tried them all.

Today was especially discouraging because the liver numbers were off and we were sent for an ultrasound. Now we wait for results and what those results will mean for us as we were hoping to return home.

(I notice that I say “we” often. I did not have a liver transplant but that is only a minor detail to the truth of how consuming being the caregiver has felt and how hard it has been both physically and mentally. Thankfully my shoulder injury from pushing the wheelchair around is improving. Making sure Scott eats is putting pounds on me. And I deeply miss my yoga class and chiropractor.)

So, I say all this to set the stage for my Panda Express fortune cookie . . .

Scott laughed. My sister-in-law laughed. My daughter called and she laughed. I also laughed—it was really a guffaw. What might have been a somewhat OK thing to say to someone who had a bad day, felt completely inappropriate to say to someone who has had a really bad year.

The fortune felt patronizing and lacking in compassionate reflection on how devastating it was for the liver numbers to go wonky after eight weeks of perfection after the surgery. (I realize I should not expect this from a fortune cookie.) If this is a bump in the road that we move past quickly, I will be grateful. It felt like one of those evil triangular speed bumps that jar the life out of your car. It isn’t. The transplant team knows how to solve the problem. But that isn’t the point.

Caregiver fatigue is real. I have a whole new respect for it. No one who hasn’t traveled this path has any idea. We have had amazing support but it is still hard. So, if you know someone who is serving as a caregiver and they overreact to something that is “just a bump,” send my post. Tell them that I am saying, "I see you and I understand."

Note: Don’t tell them you understand if you do not. I think I said that to people. I regret that because I did not understand.

And if you buy Chinese food for them, maybe you should pre-screen the fortunes!