It's Okay to Not Be Okay

As caregivers we struggle, we cry, and sometimes we’re overcome with sadness or overwhelmed by the caregiving role. Yet, we march on. Is it okay, though, to have times when we’re not okay?

Ups and downs as a caregiver

In 1967 there was a bestseller self-help book called “I’m Okay, You’re Okay,” written by psychiatrist Thomas Anthony Harris. I probably read it back in the day. As a matter of fact, I think it might have been required reading in one of my high school classes (okay, you can figure out that I’m definitely a senior!)

There are days where we’re blessed because the demands of life are easier to manage, we see improvement in our our loved one who is battling cancer, or we had enough sleep to feel energized and ready to start a new day. But there are also days where none of that is true and on those days, it’s okay to not be okay.

Giving ourselves grace

On those days, we have to give ourselves grace. There are probably hundreds of definitions of grace ranging from the Biblical definition to the atheist definition to the secular definition. Each of these, however, can include the definition of grace as accepting, caring about and loving our fellow mankind.

We need to apply that definition to ourselves on our “not okay” days. Self love, self care, and self acceptance is hard when we’re in an emotional and mental place we don’t want to be, in a place where we think we may be judged and criticized for our feelings, in the “not okay” place. But we need, and should, offer ourselves grace.

We often hear “it’s not all about you,” but sometimes it is – some days it IS all about me. Go ahead and have a pity party. Let it out: cry, scream, be sad for the things you are going through, for what you’ve lost, for your fear of the future. As a caregiver, I’ve been sad for all those things. And I felt guilty for being sad, guilty for thinking of myself and my feelings. But I have to remember, it’s okay to not be okay.

But also utilizing strength

But... (and there’s always a but) we can't live there. At some point, we have to set aside the sadness, the fears, the stress and march on. Leave the pity party and go forth in our strength. Strength is something we learn, and earn, through what we have been through and what we have survived. And our strength carries us forward. Strength enables us to keep on keepin’ on.

It teaches us to focus on the light in our lives, on the brighter side of things, on the positives that can come from the negatives, to look at things differently.

There’s no time to do the things we need to do, much less think about anything we want to do. Days are filled. Our schedule is consumed by doctors’ visits. Monday we see the oncologist, Tuesday the nutritionist, Wednesday is another scan, Thursday is a consultation. Days consist of meeting with other people, talking about the disease, the plans, the progress.

Finding the positives

The positive bright side? We live in a country where we are able to see well-trained, experienced doctors in a multitude of specialties. We’re able to get treatment, we’re able to seek out the best. We have patient advocates who help lead us through the maze, who seek out answers to our questions. We have choices in our medical care. We have insurance programs that help cover our costs.

One of the hardest things about my husband’s prostate cancer initially was telling our kids. The fact that their dad was sick struck fear in their hearts. The word cancer strikes fear in all our hearts.

What’s the bright side? The kids and grandkids now visit us more often, and they call their dad and Grandpa just to chat and see how he’s doing. Our family has grown closer, and we’ve learned to depend on each other and better support each other. Our priorities have changed and have the right focus: family first.

Marching on

It’s hard to figure out a bright side to chemo. Yes, our loved one suffered through months of chemo and its side effects. And it’s not nice, it’s not pretty. But here we are at the last chemo appointment. We celebrate that it’s the last appointment. The doctors and nurses celebrate as they line the hallway to say goodbye. Everyone cheers as the chemo bell rings, representing the completion of the chemo journey.  We celebrate that the chemo has battled the enemy, the cancer.

So, it’s okay to not be okay. Just not forever. Find the positives. Rely on others. Share your feelings. Look for the bright side. Let life meet you where you are, one step at a time. March on.