My husband of 32 years’ diagnosis with Acute Lymphoblastic Lymphoma (ALL) in October, marks the 4th person in my immediate family with a life threatening diagnosis. The first was our son. He was diagnosed with Ewing’s Sarcoma at the age of 15. Then our daughter, our 5th child, was diagnosed with Epilepsy and Cerebral Palsy. 10 years ago, my mom was diagnosed with an end stage Glioblastoma (brain tumor). Each time, I witnessed the dance of caregiver and spectator.
I continue to learn, each time.
The discovery of a serious diagnosis is akin to being dropped in deep water fully clothed. As a patient (or someone very close to the patient -partner, parent,sibling, child) it is often difficult to find that sweet spot where you are helpful and to leave your own needs out of the dynamic. For the patient, finding the voice to keep certain people at length is important – now is NOT the time to air relationship issues; that conversation can wait until the patient is well. The patient will do well to preserve the self first. For many, that is happening at a rate that has never been encountered. For the patient, being alone bounces them between facing the realities as they unfold and the terror of being alone. For the partner or primary caregiver, the check of balance must occur daily; sometimes hourly. Reassess priorities and do not begrudge the patient because you have given up something. It’s a real thing to lose your position at your job or have friends drop off the planet. When you look back over the months of intensive care, your insight will have bought you a whole new perspective. Wait for it. No one will punish you for doing what is right by a fellow human or a family member.
Don’t try to make the recurring holidays fabulous, it’s OK if they just become ‘that one time that we did…’. When someone is in the throws of a serious health crisis, let them have a say in how grand any effort should be.
It doesn’t matter how close you are to a patient, don’t offer your meme inspired remedies for some exotic flower that will gobble up the cancer raging through someone’s life. A patient losing hair by the handful doesn’t need to be reminded that it’s “just hair”. Find some restraint. You aren’t going to Dr. appointments and looking at scan results and laboratory values. When the human body is in crisis, it truly is the skill and science that performs the rescue.
Send $ for coffee, gas and phone bills. Consider ways that your life would change if you had a life changing diagnosis dropped in your lap. Could you make your car payment? Manage the dog in the house alone all day? Keep up with yard work? Suffer the loss of salary? Pay prescription costs? Care for children?
Most importantly, don’t judge the patient that he/she has somehow caused the offending illness. It is also highly conterproductive to suggest they don’t look sick enough or need a second opinion simply because YOU can’t imagine being in their shoes. Be thankful it’s not happening to you, but try to be empathetic as well. Do let the patient and their family know when you are praying/chanting/talking about them.
It’s good to know people care.