Dec 11, 2013 - 10:45 am
My husband was diagnosed with CLL seven years ago. For those who are unfamiliar, chronic lymphocytic leukemia has a long trajectory that heads inexorably towards death. My husband is in the middle of the survival range right now. He probably won't make it to ten years.
Even before he was diagnosed, we made the choice for me to work and for him to be the stay-at-home parent. He is an excellent father, a wonderful, intelligent person who can build things, fix things. He's a great cook. He's smart. He reads a ton. He's well-informed about the world. We continue to have a great sex life.
CLL has its ups and downs, and he's gone through two rounds of chemo since this started. The most recent round of Ofatumumab helped knock back the CLL but also left him with horrible chemo brain. He can't remember or cope with numbers/appointments/bills/arrangements/organization/planning.
He's also very, very tired and spends most of his time sitting and reading quietly.
I am writing because I am so tired, frustrated, exhausted, overwhelemed and feeling unappreciated. For years, he has slowly stopped doing many of the stay-at-home parent chores. He almost never does the dishes. He almost never takes out the trash. Making appointments for the kids, signing permission slips, buying clothes, making arrangements for travel, etc. are all on me. Changing the bed sheets. Organizing the kids.
Slowly, the teeter totter has tilted so that more and more of his tasks fall on me.
For the most part, I try to be cheerful about this. I am lucky to be healthy enough to work two jobs to support us. I am blessed to have the energy to get up early and run a load of laundry and get the dishes done. I am lucky that I am strong enough to get by on just five hours of sleep.
It is frustrating that he doesn't realize how much I do. I don't want to throw it in his face -- "Look how awesome I am, I kill myself and work two jobs and do your work, too, so that you can rest and take care of yourself." But every once in a while, it would be nice if I got a little acknowledgment. Instead, he seems OBLIVIOUS to how much I do.
He is oblivious to how much cancer has robbed me of my own life. Yes, he is terminally ill, I get that. That is a far worse fate. But every day of my life -- every minute -- is expended in some way to make his better and easier.
How long will this go on?
How much worse will it get?
How will I keep doing this?
Sometimes, the only thing that gets me through the day is to say to myself, "Some day, it will be time for me. Some day, I will sell this house. I will travel. I will have a life again."
Perhaps his obliviousness is a coping mechanism. Who would want to admit that they are less able than they were?
But still. I am a human being. I am not the hired help. I am not the secretary. I am not just an ATM. I am a real person with real needs. One of which is to be acknowleged.
One of my friends once said, "It's like you're walking across the street with him and you know he's going to be hit and killed by a car, but you don't know when, you can't see the car coming and the street just stretches ahead into the horizon."
It super duper horrible sucks that he's going to get hit by that car. But it also sucks for me that he doesn't have any idea what it's like to be the one holding his hand while we wait for it.