When you learn your spouse has a terminal illness, everything changes in an instant. What’s important to know as you begin this hard journey?
It happened on the way home from the hospital, where Steve Earll’s young wife, Rachel, was dying from a terminal illness. Steve was rushing home to grab a shower and some clothes before returning to his wife’s side, while friends from church cared for their children.
“I was exhausted,” he says. “And I was wrestling with God. We knew that this was the end.”
As he drove home, he was thinking that his two girls needed their mom more than they needed their dad. And then this thought crossed his mind: God, if you care, you would allow them to have their mom instead of their dad.
That’s when God responded loud and clear.
“The experience felt like being backhanded to the floorboard on the other side of the car,” Steve says. “It was jarring. Of course, I was still driving. But it was a shock to me.”
What God communicated to Steve was this:
How dare you. I care infinitely more for everybody involved than you can ever imagine.
“It was a ‘Yes, sir!’ moment,” Steve says. “It certainly wasn’t what I was thinking at all. It became a powerful assurance, as well as a reprimand. God’s heart is for everybody. We think we care, but we don’t even begin to approach the love that God has for us.”
Steve, a licensed professional counselor, not only walked with his wife through eight years of breast cancer until her death in 1997, he’s counseled numerous others after they learned their spouse was dying.
If you’ve been told your spouse has a terminal illness, everything changes in an instant. What are the most important things you need to know as you begin this hard journey? How can you cope with this shock?
Steve suggests the following five guidelines. Dr. Bill Toffler, whose wife of 40 years died of cancer, also offers what he learned from his experience. Bill has served on Focus on the Family’s Physicians Resource Council for more than 20 years.
1. Don’t isolate
Most people’s initial response to hearing a diagnosis is shock.
“We live with the illusion that life is eternal,” Steve says, but a terminal diagnosis shatters that illusion. The shock leads to fear, and that can prompt spouses to withdraw from their dying husband or wife.
“There’s a very important decision that people make,” Steve explains, “and the decision is to not isolate in your relationship.”
With the diagnosis comes the realization that “this is going to hurt, and it’s going to hurt a lot,” he said. “Our tendency toward pain is to run away from it. But as a couple, we’ve got a decision to make: Are we going to separate and isolate? Not literal separation, but we can be in a marriage and still disengage. And that’s not right.”
Some spouses, even Christian ones, disengage or leave the relationship as they listen to a society that stresses happiness above all else and living pain-free, Steve says.
“Rachel and I made the decision that whatever came, we were going to continue in our relationship and to do it together and not leave anything undone between us, to live as well as we could, even in the midst of severe chemo and everything else.”
Bill agrees that isolating isn’t a good choice when you learn about a terminal illness. “It’s not the time to be distant,” he says. “It’s a time to be closer and a time to show behaviorally how important you are to each other.”
It’s easy to see how deeply Bill loved his wife, Marlene, as he shares about losing “the love of his life” and experiencing the different stages of grief. Even so, he says the last five years of his marriage brought a special kind of richness.
“You don’t realize it at the time, but the richness that came out of our experience is irreplaceable,” he says. “The reality is that we’re all going to lose each other at some point — we’re all terminal. It’s not something that I embraced initially, but it’s also something that in retrospect — and even during — that I realized was a great blessing. We spent much more time together, and other things took second place.”
2. Face the fear and pain
As you face the terminal illness together, you’ll need to battle fear as well as the pain of losing your spouse. Both Steve and Bill note that the Bible tells us 365 times to “fear not.”
“There’s a reason for that,” Steve explains. “We think fear protects us, but it doesn’t.”
Fear represents a desire to control the future, he says, and wanting to control our lives is an attempt to be God. “And we make a pathetic God,” he adds. Fear also stresses our body.
What’s the alternative? Turning fear over to God, “sometimes turning it over 100 times a day,” Steve says, even during times of what he calls “tsunami fear.”
“You get hit with huge wave after huge wave. There will be days like that, and we just have keep turning it over.”
Another way to battle fear is knowing the difference between worry and concerns, he says. Concerns are actionable — you can do something about them. The “what ifs” of worry, however, lead to fear.
“It’s really about living one day at a time,” Steve adds. “If it is not happening today, it is not happening.”
The “what ifs” make us experience situations hundreds of times in our minds when we might not actually experience them even once, he points out.
Fear can rob you of your time together as a couple. “It’s a thief,” Steve explains. “It’s one of the ways Satan just wraps us up.”
What people don’t consider when they allow fear to run rampant, Steve says, is the impact of God’s grace and presence. Near the end of Rachel’s life, God seemed so near, he says.
“Is it difficult? Oh, yes,” he says. “But what I feared, frankly, did not come true. I could not predict anything of what took place.”
The doctors thought Rachel would die in the hospital, but she died more than a month later at home with her family and a Christian hospice nurse caring for her.
“At home, she saw 260 people and ministered to them more than they did to her,” Steve says. “It was just remarkable all the way through.”
Walking someone you love through the end of his or her life is painful, Steve admits.
“It’s probably the hardest thing a person will ever do, and maybe the most rewarding,” he says. “Too many people treat pain as fatal. Pain is directly proportionate to the degree of love we have for someone. I knew that when I lost Rachel, it was going to tear me up. But I wanted to have a relationship — and we did. That was worth all of this pain.”
3. Be intentional
Steve counsels people to be intentional in their marriage relationship as they live their last days on earth together. Being together, praying together, and talking on a regular basis is important.
“It’s time to bring prayer in as a central point,” he says.
For the spouse without the terminal illness, it’s also important to spend a lot of time listening to his or her mate, without trying to “fix” everything. Steve recommends dealing with issues, not leaving things undone or unsaid, talking about the past, and making memories.
“Hold each other,” he says. “Hold each other a lot. There is something about just holding each other and listening to each other breathe that’s a gift from God to us. It does incredible things at a psychological depth. It’s very comforting.”
Bill remembers praying with his wife during her last five years and enjoying a more harmonious relationship with her during that time.
“When you know it’s terminal, that there’s no cure for it, you live your life differently,” he says. “My wife and I argued before we got married, after we got married, and even when we were preparing to lead Marriage Encounter sessions. But I think we only argued one time in the last five years, which was a very different level of frequency. When you know your life is limited, it changes everything. So you don’t sweat the small stuff. And it’s all small stuff. I thank God we had that time because some people don’t.”
Terminal illness is difficult, Bill says, but “we should embrace that as a challenge to grow closer to each other and have confidence that God will get you through it.”
4. Know that friendships will change
If your spouse has a terminal illness, you’ll need to find support for yourself from people other than your husband or wife, Steve notes.
“As a caregiver, we have a lot of emotions, too, but we have to shoulder most of our fears and our thoughts ourselves with support from outside the home,” he says. That way, you’re not adding to our spouse’s burden. “It’s not about us,” Steve adds. “It’s a time of sacrifice, but we can get other people to help us carry that load.”
As you seek that support, realize that some friends will back away from you and your spouse. Yet, there will be others who can walk with you through the journey.
“People react very differently to terminal illness,” Steve notes. “If you go to somebody who hasn’t been through much in life, they don’t know what to do with it. But people who have been through the fires of sorrow will have time for you and a level of understanding.”
He referenced a devotion by Oswald Chambers that says, “You can always recognize who has been through the fires of sorrow … and you know that you can go to him in your moment of trouble and find that he has plenty of time for you. But if a person has not been through the fires of sorrow, he is apt to be contemptuous, having no respect or time for you, only turning you away.”
Bill suggests asking others to support your spouse, which will also support you.
“No matter what, it’s hard,” he says. “If you’re tired, have some other people get involved with being there [with your spouse]. You’re not the only person who loves the person who’s dying, so reach out and ask for others to be there.”
Steve mentioned one touching way people supported Rachel. After Rachel lost her hair because of cancer treatments, the women of their church scheduled one Sunday a month for everyone to wear scarves or hats to church as a show of support.
“That meant so much,” Steve recalls. “That was powerful.”
5. Focus on life
Steve reminds spouses to focus on living.
“Death is a moment in time — an incredible transition, a powerful transition. But this is about living,” he says. “We all have limited time. So, what are we doing today?”
Bill suggests that as Christians, we can remind ourselves that this world is not our final home.
“What’s important is eternal life,” he says. “If we have faith, we know that to be true. And we should take great comfort in that. Nothing else is as important. So as much as I miss [my wife], I also realize that she’s not pining away to come back here. Not because she doesn’t love me, but because that’s what we’re all striving for — eternal peace and joy in Jesus Christ, our Savior. And being in paradise is the ultimate blessing.”
Knowing this doesn’t stop him from being sad, Bill adds. “But it’s a joyous kind of sad.”
If you need further guidance and encouragement, Focus on the Family has a staff of licensed, professional counselors who offer a one-time complimentary consultation from a Christian perspective. They can also refer you to counselors in your area for ongoing assistance. Reach a Focus on the Family counselor toll-free at 1-855-771-HELP (4357).
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