My husband and I had been married less than a year when crisis struck.
As a patient with primary schlerosing cholangitis (PSC), he had always known he would need a liver transplant someday. What we didn’t know was that he’d almost die waiting for one. As the years with PSC, an inflammation of the bile ducts, passed without notice, John had lived a normal life. But just as his liver began to fail, we heard the bad news: he also had cancer.
Bile duct cancer grows quietly in a small percentage of PSC patients, and since cancer patients are not usually candidates for liver transplantation, they live only as long as their failing livers allow – usually less than nine months. But with the cutting edge treatment at the Mayo Clinic, John’s doctors thought he had a chance, if only they could find a donor before the cancer spread. For the next twelve months, John fought pancreatitis and a deadly staph infection. He lived through chemotherapy, radiation and a harrowing wait for a donor.
When my husband got sick, I didn’t know how I’d make it through. But as his partner and advocate, I had to gather enough strength for both of us. Here are some things I learned along the way, that can help you handle a spouse or partner’s extreme illness:
Before his illness, my husband was my biggest supporter. When he got sick, I needed to find other sources of encouragement and care. At first, I assumed that if I was strong enough, I could handle it on my own. I quickly learned I needed help. For the first three months of our ordeal, we moved to Rochester, MN to be closer to the Mayo Clinic. Friends and family arrived to help me choose an apartment, shop for essentials and stay focused on tasks – large and small. I asked for specific help, making lists and handing them over, so that I could focus on the big struggle.
Be A Filter
Consider what your loved one needs to know about his or her diagnosis. My husband needed to believe he would live, and I learned to filter the information coming from his doctors. Since he spent the first two months in the hospital in extreme pain, I was able to disseminate the diagnosis and plan. Within the first two weeks of our ordeal, John was diagnosed with a deadly staph infection. As an EMT, I knew that if the infection entered his bloodstream, he could easily die. Instead of confiding in my husband, and lamenting this fact, I repeated the doctor’s words like a mantra, they “were fairly certain (they’d) caught it in time.” John focused on that and believed he would live.
While you don’t need to wallow in your own vulnerability, it’s okay to share your feelings honestly. At first I was afraid to cry in front of John. I worried that once I started I wouldn’t be able to stop. But he needed me to share my feelings so that he could share his. In addition, by consoling me, his self-worth grew. Allow your loved one to offer you support. John’s optimism during his ordeal buoyed me, which in turn allowed me to stay strong for the long haul.
Do The Paperwork
As hard as it is, take care of financial matters. My husband needed to revise his will, consider his life insurance policy and consolidate some of his affairs. Ask for help with these matters. In a perfect world, you and your partner would have already accomplished this. In reality, these documents often need revision. Find a third party who can provide some objectivity. Don’t put this one off.
Your partner is dealing with a traumatic illness. Don’t burden him further by giving him problems he has to solve. Find the balance between honesty with your feelings and sharing too much of your fears. Take small breaks away to cry and let your panic pass. Your partner needs you to keep it together. Consider the view from his angle.
Use A Tape Recorder
A friend of mine suggested that I purchase a small tape recorder and bring it to my husband’s appointments. I recorded the doctor’s words, so that I didn’t have to commit them to memory. Later, when my husband and I went through the appointment in our minds, dissecting the nuances of the diagnosis, searching for a shred of hope within the gloom, I could replay the doctor’s words. This was one less burden I had to carry with me.
In the midst of a dire illness, looking too far ahead can paralyze even the strongest person. Instead, strike a balance between the future and the present moment. Make a long-range plan, and then implement it in small increments. When our ordeal threatened to overwhelm me, I broke it down into fifteen-minute segments, telling myself to just get through the next one, and then the next. I’d learned this technique on the slopes as an EMT and ski patroller and put it to work at my husband’s bedside.
Care For Yourself
This isn’t just your partner’s illness. This is also happening to you. You are staring down a weighty loss. Give yourself space. Allow time alone and with supportive friends and family. Ask for help. Take care of your own needs so that you can be there for your partner.
Getting through my husband’s illness has been the biggest challenge of my life. In many ways, it can be hardest on the caregiver, who, while staring down the specter of losing her loved one, must also become the source of hope and strength. And yet, there are always blessings. We become most wholly ourselves during our biggest trials. I learned to slow down and get through life in small increments, finding my strength in the moment.
Kim Kircher has logged over 600 hours of explosives control, earning not only her avalanche blaster’s card, but also a heli-blaster endorsement, allowing her to fly over the slopes in a helicopter and drop bombs from the open cockpit, while uttering the fabulously thrilling words “bombs away” into the mic.