How to Cope When Your Loved One Is Terminally Ill

“Dad's sick. Aortic aneurysm. Unlikely to survive surgery.”

Within hours I was on an airplane to Indiana, and my brother was on another airplane coming from the East. “He has a 10-percent chance of surviving the surgery,” my brother told me.⁽¹⁾

In my mind, I was flying to say farewell to a body, to kiss my father goodbye. I did not expect to see my father alive again.

My father survived. But he had suffered from hypoxia, which is a lack of oxygen, during the surgery — the result of being on a heart-lung machine too long, or body cooling, or both or something.

He would go on to spend 30 days in the ICU, paralyzed on one side of his body. Most of those days he was on a respirator with a feeding tube.

A bald, austere internist visited daily. He answered questions about our father’s recovery with “Consider what quality of life he’ll have,” meaning we should let him go. Another brother and I privately referred to the internist as “Dr. Death.” We wanted to see our father well.

Just days before, our dad had been mowing his own two acres. He had signed up for a woodworking class. How do you transition the image of your dad from a vital, funny, independent man to an ICU patient kept alive by machines? How do you let him go?

It turns out, my father had nine more months of life, a life of steadily improving quality that I thought was limitless. He had to relearn how to eat, speak, sit up and walk.

We moved him to a rehab facility in Arizona, where he eventually came off the feeding tube, ate real food, talked, walked a few feet with a walker, and even read a storybook to my 3-year-old daughter.

And then he got pneumonia. He woke one morning unable to breathe. An early morning phone call. An ambulance ride to the hospital.

Within two weeks, my father was dead.

The journey from initial illness to death with someone you love is an odyssey of pain, stress and loss for all involved. The following are some tips for coping.

Stay healthy

Grief can be deadly, and grief can begin as early as your loved one’s diagnosis. Severe emotional or physical stress called stress cardiomyopathy can damage your heart muscle. Also known as “broken heart syndrome,” the condition can be serious if not treated.⁽³⁾

If you are experiencing chest pain or shortness of breath, see your doctor today or go to the emergency room.

For God’s sake, get enough sleep.

Hospitals, the anxious vigil at the ICU, middle-of-the-night phone calls and dread every time the phone rings, trips for blood tests and doctor visits, worry and nightmares: they all conspire to wring you out and leave you shattered.

Sleep when you can.

Eat well and drink water.

And do as I say, not as I do.

For nine months, I lived exclusively on drive-thru venti lattes picked up on the way to the nursing home: latte on the way there, latte on the way home — my “meal-replacement plan.” I lost 50 pounds and my hair turned brittle and frizzy.

Be good to yourself and cut your visits a little short so you can grab a few healthy things at the market on your drive home. If you are caring for a sick loved one at home, every time someone offers to help, say yes and ask, “Can you bring over a healthy meal?” Freeze meals you don’t immediately need.

You just might need pharmaceutical help.

I’m not a personal fan of the pharmaceutical industry, as you can read here. But I had a tranquilizer those first days in Indiana, and I took one every evening when my brother and I returned from the hospital.

I took a tranquilizer so I could face eating a meal, so I could stop my racing heart and cluttered thoughts, so I could calm down enough to sleep.

If you need help calming down, see a doctor.

Talk

Rely on friends. Talk about your pain. If someone you trust asks how you’re doing, tell the truth.

If you are overcome with sadness, seek out therapy or spiritual counseling. Most hospice organizations offer grief counseling.

Talk with your loved one about death, but let him or her establish the boundaries.⁽⁴⁾

Ask,

- “Are you worried?”

- “How can I help?”

- “Would you like to talk about anything?”

- “What would you consider a good death?”

Reassure your loved one.

Don’t leave loose ends. Express everything you want your loved one to know:

- “I love you.”

- “Thank you.”

- “We’re strong. We’ll be okay when you’re gone.”

If needed,

- “I forgive you.”

- “Please forgive me.”

And finally,

- “It’s okay to let go.”

Have every hope, but remember, everybody dies.

The hardest intellectual journey may be adjusting your thought process from “My loved one is sick,” to “My loved one is dying.”

When my father went to the hospital the last time, I ran into a friend’s husband, a doctor, in the hospital parking lot. He asked me what I was doing there.

“My father is dying,” I said, before I had realized it was true.

Talk to doctors to get a realistic idea of the chances of recovery. Ask the hospice nurse how much time they think your loved one has left. Believe them.

Be present at appointments, play funny movies, assure your loved one of your devotion. Spend as much time together as benefits the dying person. Love and let go. Then face your grief.

“Grief doesn’t come from nowhere, an intrusion into the natural order of things. It is the natural order of things ... a sign of life stirring towards itself,” wrote Stephen Jenkinson in “Die Wise.”

Your grief will be tremendous. In my father’s last days, I fell to my knees in my living room, a sound escaping from deep within me, deep and dark as the cosmos, the sound of my connection to my father on this earth breaking apart.

Be prepared for the breaking. Trust that you will heal.

Reviewed November 14, 2016
by Michele Blacksberg RN
Edited by Jody Smith

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• Emotional Health