CLL patient: My spouse, my caregiver

Perhaps the hardest thing a spouse can do is become a caregiver for their other half. This may sound absurd since we all agreed to "for better or for worse, for richer, for poorer, in sickness and in health 'til death do us part."

Still, the task is not easy. I've been a caregiver, and I've been a patient. I believe being a caregiver is the more difficult task.

Throughout our marriage, my wife Melanie and I have taken care of each other. But until my chronic lymphocytic leukemia (CLL) diagnosis in 2006, all our caregiver roles were short-term.    

Whenever Melanie played caregiver before my CLL diagnosis, healing was always just around the corner. This time it's different.

How our roles changed during my CLL treatment
Melanie's responsibilities have changed as my CLL treatment has progressed. During my first round of chemotherapy, I remained strong. In four months, I only missed 20 minutes of work. Melanie's role was relatively easy. But less than two years later, the disease was back. This time, chemo was a little rougher on me. I was tired a lot. Melanie had begun to take on the role of financial coordinator for my cancer treatment. She had always kept the checkbooks in our household, but now she had to complete the financial aid paperwork, too. She also took on the lawn care; I was too tired.

Further CLL treatments made me even weaker. Now, Melanie was doing everything. It was as though she was a widow, but she still had to take care of me. It seemed the weight of the world was on her shoulders. She was strong, but for how long?

When my caregiver became my patient
About halfway through my illness, Melanie was diagnosed with Parkinson's disease. It was then that we both became patients and caregivers.

I did what I could to shoulder her needs while she shouldered mine. Fortunately, her condition is fairly well-controlled at this stage, but again there is no cure.

After her diagnosis, my goal changed from controlling CLL to seeking a cure. I have to get better so I can become her full-time caregiver as the Parkinson's disease progresses.

Traveling to MD Anderson with my caregiver
A few months after Melanie's diagnosis, I began another round of chemotherapy. It didn't work.  My disease was becoming chemo-resistant.

It was at this point we decided to seek help at MD Anderson. The goal was a stem cell transplant.

Our financial woes increased. How would we pay for it all? It's not easy asking for help. We have always been the givers. Now we had to become receivers. Our family helped raise money. Our church took care of major home maintenance needs -- cleaning the yard, re-roofing and refurbishing external needs on a rental.

When we traveled to Houston for our first visit to MD Anderson, I developed a 102 degree temperature at the airport. Talk about worrying my caregiver. A friend picked us up and took us straight to the ER. A short stay became prolonged since I was admitted for evaluation. Melanie made daily trips from the hotel to MD Anderson. She took the lead in asking questions.

After multiple trips from Arkansas to Houston and admission into a drug trial for ABT-199, the test treatment has done its job. The CLL is under control. My strength has improved, so I am able to take over some of Melanie's responsibilities. The next step is the stem cell transplant. The struggles will repeat themselves, but the end may be near.

The secret to being a good caregiver
I asked Melanie what her secret is for caring for me. She said:

Yes, there are times when I get tired. It was especially trying when you could not go out of the house because of your compromised immune system. I had to do all the errands and things that you would normally have been able to do. It was all waiting there for me. 

It is rewarding for me to see how you are reaching out to those affected by illness through your writing and mentoring. You have a wonderful attitude and you keep me inspired.

As I've learned from being a patient, it's important to be kind to your caregiver and treat him or her as you want to be treated.

And, if you're the caregiver, be understanding. Your spouse will not always feel good. He may be grumpy at times. Accept the bad days and do what you can to make them better. Love your spouse as you want to be loved.

After all, as Melanie told me, "Being a caregiver is something you just do for someone you love."

Chronic lymphocytic leukemia (CLL) is one of the cancers MD Anderson is focusing on as part of our Moon Shots Program to dramatically reduce cancer deaths. Learn more about our CLL Moon Shot.