Fighting cancer runs your life. You lose control.
A cancer patient is scared and stressed about the uncertain future. Schedules life around countless doctor appointments, tests, treatments and recovery. Suffers sometimes unsoothable, excruciating pain.
While you, as a caregiver, want to help ease this journey, your good intentions may accidentally cause a patient to have to manage you, too. Unwanted communication or the wrong kind of help can add to a patient’s workload. To prevent this, you can give the patient control over your relationship and the assistance you give. Your outreach will be most appreciated and effective if you can empower the patient to dictate the needs and communication rules.
For example, when I was battling cancer, I sometimes needed to be left alone. In chemotherapy for breast cancer in 2006, I had to hide from the world for 3 days after each treatment to recover and to just push through great suffering. My chemotherapy for ovarian cancer in 2013 was worse. I required over a whole week of solitude each time.
In all these recovery periods, I did not want to talk – even to caregivers at home. I could not hold a conversation, pay attention to read a book or to follow a TV show, or even sleep.
I did not turn on my computer. I barely looked at my phone. I certainly was not going to leave my pajamas or put on a stitch of make-up – or worse, a wig – to try to be presentable to anyone. I needed people to stay away.
Not all patients are like me, of course, but we all have such periods. During those times of recovery from treatments or surgeries, I most appreciated people who expressed thoughts and availability for help first in non-intrusive ways. One-way communications – like email, SMS, WhatsApp, or Facebook – allowed me to control my contacts. I could read something immediately or much later, and I was never forced to reply.
My favorite messages were the equivalent of a tap on the shoulder or a hug, conveying that someone was thinking of me. Messages seeking updates, wanting to know how I was doing, or asking when I can receive a gift that I did not even want were the least welcomed and the most frequently ignored.
So how do you express your concern and availability to help in a way that minimizes the patient’s work and lets the patient direct the relationship?
1. Make your conversation one-way
Channel your passion to take action first into communication requiring no effort or response from the other side. Especially when you are not a family member or close friend. A simple message such as “Thinking of you J” or “I would love to be an ear anytime if you want to talk” does wonders for someone’s spirit and opens the door to the next level interaction that the patient can set and engage – phone calls, visits, support in action. You may get silence back if a patient needs space, but you may hear how your help and phone calls are most welcome. You will understand if your care may be needed or may be annoying.
2. Don’t ask questions
Avoid question marks in your writing. A question mark means that you are seeking a reaction. Since patients have to tell their story all the time, it can be exhausting – even with good friends and family – to repeat updates. Convert a question to a statement: “How are you?” into “Hope you are doing OK today.” Transform “How was chemo?” to “I know you had a treatment this morning and I hope it went as smoothly as possible.”
Say, “I want to make sure you have water so I’m bringing over a six-pack. If you do not answer the door, I will leave it outside” instead of “Can I bring you water today?” The person may not want to respond to you, be seen or manage a guest. Put the patient in the driver’s seat about answering you.
3. Keep your phone down
Let the patient initiate any calls from the hospital or during recovery from treatments. A ringing phone forces a response, and you never know if it is a convenient time. Check-in first through a written message if you want to speak. You can express your desire to call and let the patient select the time to talk. You don’t want to wake someone who forgot to mute the ringer and just got to sleep for the first time in days. Or catch someone sitting on the bathroom floor feeling sick.
Offer a menu of help options if you want to provide any kind of assistance, allowing the patient control over the support. Suggesting specific kinds of things you would be willing to do enables the patient to feel more comfortable asking for and accepting your offer. It also allows the patient to choose the help.
While I would have declined acupuncture, I would have gladly accepted a food delivery of something specific I could eat, arranged without speaking and left outside my door. I would have appreciated a book but would have hated a flower arrangement demanding upkeep. That’s just me. Others will never want to read a word and will love bright, happy flowers.
In general, patients know you want to help and will be extremely thankful for it. They just prefer not to manage it. You can give the gift of your love and care through empowering patients with control over your assistance and attention. Preventing their work will maximize your impact.