Everything Changes - The Guide to Young Adult Cancer

I’m still living with cancer in me.  But it’s been years since my last treatment.  Now that treatment is farther in the past, my mom and I are able to talk about it more, especially about her caregiving role.  She flew across country, lived in my tiny apartment, and took care of me for weeks at a time.

A few months ago my mom said, “I wish your friends had called me up and asked to meet me to lunch.  Or taken me out to the movies.  You wanted your alone time each day.  I was in a new city and overwhelmed, I really didn’t know where to go.”

The desperation of her statement was a shocker.  My mom’s no shy country mouse.  Drop her in a new city with a street map and she’s taking public transit to parts of town I’ve never heard of.  But this was different.  Few things are more painful to a mom than seeing her kid critically ill.  She needed to flee our little infirmary and zone out in front of the big screen.  I was too absorbed with my own illness to even realize.

My mom is still a huge support to me.  But my husband Shannon has now taken over as my main caregiver.  It’s super stressful for us when we are waiting for test results or dealing with my treatment and care.  I shoot out emails to his friends when it gets close to high anxiety dates (scans, big doc appointments).  I ask them to take him out for beer.  (Belgian at the Hopleaf if possible.)  Is it my job as the patient to help take care of my caregiver?  In small ways, when I am physically able, I think it is.

If you’re a caregiver, what do you do to take care of yourself and get time away?  Is it hard to make time?  If you are a patient, do you think your caregiver spends enough time taking care of themselves?  Are you able to help them get some time away?

Read hard to find practical tips and resources for caregivers in Everything Changes: The Insider’s Guid to Cancer in Your 20s and 30s.

In the Young Caregivers section of my book Everything Changes, I write about a study that shows while cancer patients and caregivers both suffer from quality of life and mental health issues, patients have a greater sense of spiritual wellbeing and social integration than our caregiver counterparts. We tend to bounce back, and sometimes even benefit from the cancer experience, while caregivers are left alone to pick up the pieces.

Some say patients cannot help caregivers, I disagree. My husband Shannon should be canonized as a saint for his caregiving both in crisis moments and on a daily basis. It is easy to identify what he does for me, but I asked him what I do that makes his job easier. We came up with a list - it doesn’t just apply to partners, but any caregiver: parents, friends, siblings, roommates.

1. Make a break
Caregivers may feel guilty taking a break. Patients need to encourage and facilitate it when able. I email Shannon’s buddies suggesting they go out for Belgian beer. He usually won’t pick up the phone and make plans, but if his friends initiate, he goes and enjoys the time away.

2. Lean on others
Your caregiver can do a lot, but they cannot be your everything. Get support elsewhere. Sometimes when I’m crying at 3AM I pick up the phone and call my mom. Shannon is here for me too, but he is really glad to get a break and a good night sleep. Let others in.

3. Give internal updates
Be a good communicator. Let your caregiver know how you are feeling without being bratty or reactive. If my hormone therapy is messing with my head, I tell Shannon nicely that I’m on a hormonal roller coaster, I hope he can bear with me, and I apologize in advance should I become a bitch. If I’m scared about an upcoming test and don’t want to talk about it, I don’t just go silent. I tell him nicely that I’m scared and it is easier for me not to talk about it.

4. Listen to them
Find lulls when medical, administrative, and household chaos is not erupting and ask your caregiver how they are doing. Maybe they don’t want to burden you and feel more comfortable unloading with a friend, but at least give them the opportunity. (Warning: only initiate this kind of conversation if you feel secure, objective, and free of cancer patient guilt, otherwise you are opening Pandora’s box.)

5. Squeeze two fingers
Did you know that it is less bone crushing to squeeze someone’s pointer and middle fingers together instead of squeezing their whole hand? Think about that next time you grasp for your caregiver’s hand during an IV stick.

Do you believe that patients can be supportive of caregivers? What are some stories you’ve had about what works or doesn’t work in the patient-caregiver relationship? What other tips would you add to this list?