Voices from Caregivers on Family Caregivers Month

As November comes to a close and families come together over the holidays, let’s remember the importance of the caregivers in our lives. November is National Family Caregivers Month and a great opportunity to give out appreciations to the family and friends who helped support us during our diagnosis, treatment, recovery, and today.

We are pleased that there are many caregivers who are active in our Cervivor community. Several have shared their experience on our blog.

Like Lillian, who wrote about how “taking care of my mother has made me grateful and showed me how to go on.

My great aunt took care of my mother. But when my aunt fell asleep, my mother would call for me to help her. I was young, and it was incredibly painful to take care of my mother and see her suffer. I developed a lot of inner strength during that time. I relied on the love I had for my mother to carry me through those nights. I remember one evening when she was in pain, we held hands and listened to the song ‘I Feel Like Going On.’ We listened to that song so many times that eventually we were both singing it. We both felt encouraged. I felt like I had the strength to take care of her, and she felt like she had the strength to live for her family.

Lillian lost her mother to cervical cancer. In her blog, she reflects about the impact that caring for her mother had on her life. “Many times in my life there have been things that are rough. Many times I want to give up. Sometimes I am having a bad day. But I think about that day, when I held my mother’s hand and sang, and I feel like going on.”

Like Tarrence, who so honestly and openly shared the challenges of getting from one day to the next in his blog post, What did I do as a caregiver?  I endured. 

I just kept going and tried to do things that could keep us all moving forward getting through one day at a time.  Ultimately my role as caregiver was to show up every day and do the very best I could.  That’s really all anyone can ask of you, and it’s literally all you can do…Through this experience, I learned a lot about what it means to really be with someone.   I learned that I can show up for someone in ways I’m not sure I knew I could before this.  I learned that I’m stronger than I thought I was and that my Heather is truly the strongest person I know.  I learned a lot about letting people in and being vulnerable.  For me, being a caregiver meant calling upon all I had to get through one day and onto the next.  It meant bringing the best parts of myself to the tasks we were presented with each day.” 

Like Claude, who learned about truly “being a man” when he became a caregiver to his partner Holly.

In my opinion, being a man is standing with the woman you love and help her walk down a linoleum hallway in the middle of the night and holding her hand as she struggles to stay upright.  It’s holding the catheter bag filled with despair and fragile hope. Being a man is running to every CVS, Walgreens and 7-Eleven trying to find a back scratcher for Holly to use on her legs as she cannot bend down to reach them while she lies between fits of incredible pain. Being a man is staying awake all night to rub her back as gently as possible, so that she may rest for even just a moment.”

Caregivers are a core part of our lives and our Cervivor community. Please leave a comment below if you have an awesome caregiver you want to give a shout-out to. If you have a caregiver who is willing to write about his/her experiences and perspective, we’d love feature them in an upcoming blog! We are stronger when we share our stories, and the whole community can benefit. Email us at info@cervivor.org

Is someone in your community currently helping support and care for a loved one undergoing cancer treatment? Make sure they have resources that can help, such as plugging in with the Caregiver Action Network.

Cervivor Dad

It’s strange to think back on my experience as a husband and father when Mary was in treatment because for most of that time I put myself to the side. Everything was put on pause to focus on making sure she was getting to her appointments, as comfortable as her body would allow, and – on the good days – eating.

I’m not complaining. It’s just what you do. When a little kid gets hurt, you run to check on them. When something catches fire, you put it out. And when your wife is diagnosed with cervical cancer that’s spread to her lymph nodes, everything else seems pretty small by comparison.

When you’re in an emergency situation, you suddenly become very clearheaded and logical. “Let’s see. The dog is on fire, so that’s probably the first priority. Let’s get a blanket on her. Okay, that’s out. Mental note: call the vet after this. Now the teenager is under a burning rafter and the baby is in the playpen. So yell at the teenager to carry the dog out and grab the baby with one hand and the diaper bag with the other, just in case.” Later, after the emergency is over, your brain exits Survival Mode and lets you collapse into a pile of trauma-flavored Jell-O.

For those months between diagnosis and the “all clear” sign, it was an emergency situation. My brain shut down most of my emotions so I could A) better attend to Mary’s needs and B) survive the stress and fear without sinking into despair or having seven simultaneous heart attacks.

I’m lucky. My coworkers are very understanding and sympathetic when it comes to family matters and the nature of my job allows me to work from home. Thanks to that, once Mary’s treatment went from surgery to external radiation every weekday, chemo once a week, and several internal radiation torture sessions, I was able to stay home with her and bring my laptop to chemo.

What was hard was watching her waste away. That was a sadness I couldn’t turn off. She had no appetite and became weak and skeletal. Walking 20 feet to the bathroom was exhausting for her. It hurt to see her suffer, and I think I used my work as an excuse to sit in the living room to witness her suffering a little less, which I’m not proud of. I never allowed myself to imagine what would happen if she didn’t make it. It’s like asking what you would do after the world blew up.

Helping the kids was easier. Our teenager was zealously optimistic. He knew with the certainty of youth that his mom would be fine. I was jealous. Our daughter, on the other hands, buries her emotions (like her dad), so comforting her took some effort. Once she was ready to talk, she appreciated the reassurance, but until then I just told her it would be okay and trust that the words made it into her ears.

Their grades suffered, but I couldn’t get upset with them. I was letting the place become a pigsty and slipping some at work myself. You may have heard, cancer is a little distracting. I figured we’d all straighten out when it was over, and we eventually did.

A year and a half later, Mary still has trouble. Some lymph nodes were removed, so her legs and feet swell up. She also has some serious anxiety. It’s gotten better, but she has good days and bad days. Seeing her struggle made me open up about my own lifelong depression and anxiety, mostly so I could help her. I talk her through bad times if she needs it and we give each other space if one of us needs that. The kids know that sometimes people need alone time and that’s okay.

Sometimes she faces bouts of horrendous chronic pain. There’s nothing we can do about it without medication. After everything she’s been through though, I figured she may want something more natural. One doctor along the way told her to consider medical marijuana, and whilst there seem to be many benefits she isn’t too sold on the idea of smoking marijuana around our children. Which, as a mother, is a fair sentiment. A friend told me about CBD oil products to help ease the pain and lessen the anxiety for her. I’ve been considering it after finding a coupon here that would make a first try a bit cheaper, but we’ll want to get an all clear from her doctors first.

Like many who face death, we came out the other end more focused, like we were forged in the fire. Mary speaks and writes about battling cancer and her volunteering fills me with awe and pride. The kids are more appreciative of basically everything. And I learned that openness is not lethal. We’re all doing things we want to do, skipping things we don’t, and being fuller versions of ourselves.

We know that if it resurfaces and she has to go back into treatment, we’ll have a better idea of what to expect and what to ask. We also know the statistics and the odds. But until her next regular oncology appointment, we’re just living life.

Dan lives in Richmond, Va. with his wife Mary and their two kids. Dan and Mary met when she started coming to see bands play at his house. She fell madly in love with him after hearing his college radio show which featured terrible music and a fictional wrestling program. Now Dan proofreads credit card websites, which is as exciting as it sounds.