We didn’t linger long in the windowless room. A doctor ushered us onto stiff chairs as he settled in front of an empty desk. Turning toward my 27-year-old husband, Jason, he said, “Your brain tumor is growing again. You probably have two to three years to live.”
I don’t remember our reply. In fact, I’m not sure he gave us time to say anything before continuing with, “There’s nothing we can do here. You should probably just go home and find a doctor to follow your care.”
With that, the meeting concluded. But in the space of those five long minutes, the entire trajectory of our lives changed. As we left the office, we entered “The Land of Terminal Illness,” where the clock ticks loud but time stands still.
It’s a strange place to live. Every moment carries heightened intensity, yet kids need tending. Groceries need to be bought. Toilets need to be cleaned.
Normal life goes on, yet there’s nothing ordinary about it. So how do you cope when your spouse is dying? Keep three things in mind as you journey with your spouse through the land of terminal illness.
1. Presence matters
Not long before Jason and I started our drive home after that appointment, my sister called me. “We heard your news,” she said. “Do you want to stop by Amy Grant’s farm before you leave town?” Her husband’s cousin was a good friend of the famous Christian singer.
“Of course!” we said. And a few hours later, we pulled into Amy Grant’s driveway. As Jason rode four wheelers, I stood by the singer’s pool and was surprised when she came out of her house and joined us.
As she started talking to me about Jason’s diagnosis, I struggled to communicate what had happened and what I felt. Jason had few symptoms. The sky shone a brilliant blue. We’d been making ministry plans all year. And I was processing all of that in front of my favorite musician. How on earth could all those good things align with what the doctor said? That Jason was dying. Truly dying. It didn’t seem right.
As I wrestled with these thoughts, Amy said something that took me a while to digest, “Some people pull away from those they love when they get bad news. But it sounds like you’re pressing in.”
Halfway home, I realized that part of me did want to curl up in a ball and pull away. But Amy’s words came back to me. I knew if it was normal to pull away, then I didn’t want to give in. I wanted to press in — to be totally present for Jason. I wanted to plan date nights, linger over a fire — to be fully with him in every way.
Thankfully, help comes in many different forms when your spouse is dying: good doctors, other patients, a random woman in the grocery store. Some friends rally while others you thought would never let you down fade into the background. I learned that in the land of terminal illness, presence truly matters.
2. Memories matter
Ever since Jason died, I’ve been keenly aware of the value of memories. It’s amazing how someone can stay alive deep inside yourself. So, if your spouse’s days are running short, make memories. That doesn’t mean you need to fulfill a bucket list. It means you should be intentional about creating beautiful moments where you are.
I’m doing this now with my grandchildren. Due to my current physical limitations, I can’t go camping. With limited leg strength, too much walking leads to fatigue. But recently I built a fire in my backyard with my grandkids and roasted marshmallows after lunch. We had so much fun that we did it again and roasted hot dogs for dinner. We hunted for wood, chopped up a branch, and threw in acorns. Then we snuggled as we admired our work. It felt like I was camping.
As illness intensifies, travel you once enjoyed may require purposed planning and medical equipment. But do it anyway. Borrow walkers, wheelchairs, whatever it takes. Accepting the help is hard, but making those memories matters a great deal. So, defy the illness. Set your eyes on a scenic view that radiates the goodness of God.
3. You and your spouse matter
Ten years after Jason died, medical issues became my norm. In time, my youngest son and I were diagnosed with a mitochondrial disorder, meaning our cells don’t power like others. I’ve now undergone 11 surgeries to stabilize joints and correct double vision.
My slow neurological decline has often mirrored my former spouse’s. Though not as dramatic, it taunts me at times, leading me to feel “less than,” much like Jason did.
I well remember the night we were dressed for a fancy dinner and Jason’s numbed facial nerves didn’t realize salsa was running down his face onto his shirt. When I grabbed a cloth to wipe his face, he looked into my eyes and said, “You deserve someone better than this.”
I was appalled. Appalled that he thought dripping salsa defined his self-worth. But as someone who now wears ankle-foot orthotics and one of two pairs of prism glasses depending on the situation, I better understand how he felt. I’m not shiny and new. I’m worn out and duct-taped together. And some days it’s just hard.
But there’s not a day that Jason was alive that he didn’t matter. Loving him to the end was easy.
Jesus died to show we matter. That Jason mattered. That I matter. That you and your hurting spouse matter — every day. We’re alive for a short time for a reason, even if sick and compromised and not our best selves.
And perhaps we’re alive for even more than we understand in the hardest moments. Perhaps we do our best work when we allow others to grow while caring for us. I grew so much walking Jason to heaven’s door. And I’m growing still amid unwanted physical challenges. That brings me back to a Scripture that’s meant a lot since high school, “We are not of those who shrink back and are destroyed but of those who believe and are saved,” (Hebrews 10:39).
Even now, it’s a rally call. When your spouse is dying, don’t give up. Don’t shrink back. Be present. Make memories. Stand your ground. Live in the fullness of Christ. Eternity hovers near. Oh, that we would live today in the light of what’s to come.
