caregiver

Tell Me I Was A Good Mother, Tell Me I Did Everything I Could For Her

Colleen lost her daughter Caitlin to cervical cancer in May 2020. Caitlin was 32. Colleen was there on the day Caitlin received her Stage 4 diagnosis, and on the day she died just two years later. For Caregiver Awareness Month (November), Colleen shared some experiences and reflections with Cervivor:

I was with Caitlin April 13, 2018 – the day her doctors told her she had advanced cervical cancer.

I was familiar with the term “Stage 4.” I’m a surgical scrub nurse in the labor and delivery unit of our local hospital, so I know medical terminology. Maybe it was because of this that I could never fully wrap my  head around how she could possibly ever fully “beat” stage 4 cancer. So I prayed for time. I only got two years. She died on May 17, 2020.

I had hoped Caitlin would have more time to do some stuff before she died – to travel and experience the world. She kept on with different treatments. Chemo. Radiation. A clinical trial with an immunotherapy. They would work, a little bit. The tumors might shrink, but then come back. Or the treatment would work on the tumors in her cervix, but not on the cancer that had spread to the other parts of her body.  Still, she kept her spirits up. She kept fighting. She found a community of support in Cervivor. She did all that she could to share her story. She wanted to make sure that this didn’t need to happen to anyone else. She had so looked forward to attending the September 2019 Cervivor School in Chicago to hone her story sharing and outreach skills, but was ultimately too sick to attend.

As her mother, I just tried to accommodate her in any way I could. Whatever she wanted to do, I helped her do it. She surrounded herself with family and friends. She cherished her time with her nieces and her friends’ young children and took so much joy in them. Her best friends came from near and far and took turns living with her. Her brother came home from the military and stayed with her. She surrounded herself with love. Her friends made sure she was not alone. They did fundraisers to help with her medical costs. They organized meal drops. They strived to have “regular” Friday nights with pizza and beer, hanging out in her living room so that she didn’t have to give up her social life even when cancer was taking its toll. That made such an impression on me. I was proud that my daughter – always a fun and popular girl who loved going to concerts and music festivals – had such strong friendships and supportive friends.

I took the role of taking care of the caretakers. I cooked for everyone. I straightened up. That is the story of my life. I’m a mother and a nurse. But I wish I had stopped running around and just sat down to “be” with Caitlin. I wish I had just slowed down and spent time with her rather than always being so focused on “taking care” of her.

Yet at the same time, I’m always wondering, did I do enough for her?

Please tell me I did everything I could for her.

Please tell me I was a good mother.

I took family medical leave from work when Caitlin finally entered the care of hospice. I didn’t realize that two weeks after she started hospice, she would be gone.

Caitlin left me a gift that I am forever grateful for. Mother’s Day was a few days before she passed away. She gave me a beautiful Mother’s Day card that told me exactly what I needed to hear – that she loved me and loved her family. That card assured me that she knew she was loved and well cared for. I pray on those sentiments. I carry them with me.

I think what Caitlin would want to tell all women undergoing cervical cancer treatment, all women in general and, really, all people is this:

  • Listen to your body. Advocate for yourself.
  • None of the bullsh*t matters.
  • Cherish your time with your friends and your family.
  • Let go of FOMO (fear of missing out). If you are with your family and friends, there is nothing more important that you are missing.

I keep Caitlin alive in my mind every day. I talk to Caitlin’s friends about what is going on in their lives, and I find comfort in that. We are all friends on Facebook, and when a Facebook “memory” with Caitlin pops up for them, they share that with me.  They share photos of Caitlin at concerts, festivals, weddings and celebrations.  They share those photo memories of my beautiful daughter out enjoying the world with them. Her life was short. But she did amazing things and surrounded herself with amazing people. 

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 [email protected]

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.