The Heart of a Caregiver

Dr. Nina Rickenbacker Edwards lost her daughter Teolita to cervical cancer in 2019. Teolita had been an active member of Cervivor and a proactive advocate about cervical cancer. “Whenever or wherever Teolita was given an opportunity to speak, she would use that time to raise awareness about cervical cancer,” Nina reports. In honor of her daughter’s mission to outreach and educate, Nina shares some lessons and perspectives on caregiving for Caregiver Awareness Month.

My daughter Teolita passed in August 2019 – just a few weeks shy of her 39th birthday. During Teolita’s cancer journey, I reflected on the many roles that Teolita said I had played in her life: teacher, preacher, doctor, chastiser but most all, mother and best friend. Later during Teolita’s journey, I had to officially add the role of caregiver and provide support and care for my independent, brave and strong adult daughter when her physical health was waning.

I learned that there are some key characteristics one must have  – or develop – to be a loving caregiver: a heart that is full of compassion, joy, peace, patience, kindness, goodness, and gentleness.

  • Compassion comes from within. You understand what someone else is going through. You strive to do all you can to connect with the person you are giving care. 
  • Joy comes from accepting the challenge of taking care of someone and knowing that you are providing them with all the care and support you can provide. You feel useful, needed, and even gain a sense of purpose.  
  • Peace can be found in caregiving, regardless of the circumstances you are confronted. When you know that you have done all that you can, even if negative situations arise you can find peace in knowing that you gave it your all. 
  • Patience is a requirement for successful caregiving.  Patients needs can change daily, so you must be able to adjust to change on short notices. 
  • Kindness, goodness, and gentleness are essential to meeting and managing the needs of those in are care.

It was painful as a mother to see my daughter suffer. It was hard to watch my daughter fight with all she had. Teolita had such drive, determination, resilience and passion. But even in my own pain, I learned that as a caregiver, when we care for others from the heart, we can adapt to the circumstances and conditions of the loved one under our care.  In doing this, I received a profound sense of purpose and satisfaction knowing that I had a direct impact on the quality of my daughter’s life.

The advice Teolita would share with so many women was “you are braver than you believe, stronger than you seem, smarter than you think, and twice as beautiful as you would ever imagine. Never give up, never give in. You had cancer; cancer didn’t have you.”

I think this advice applies to caregivers too. You are braver than you believe and stronger than you ever envisioned you could be. Be good to yourself so that you can give care with a full heart. As caregivers, we give so much of ourselves. Take a break and recharge.  You cannot possibly take care of another person if you are not physically and mentally healthy yourself.

To honor her daughter and continue Teolita’s mission of education and cervical cancer prevention, Nina and her community host an annual Teolita S. Rickenbacker Cervical Cancer Awareness Fundraiser Luncheon. See news coverage and TV clips of the January 2020 event.

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.