An interview with a brain cancer caregiver.
By: Jenna Lindman, John Rego
I had the opportunity to work with an amazing woman named Robyn Stevens (formerly Rego) at my previous job. Robyn would always come into work like a brilliant ray of sunshine, bringing light and warmth to everyone she encountered. We worked in a salon, which was fun and creative work – but let’s be honest, working with women’s hair in a customer service atmosphere is challenging. Even under stressful days, when there was a customer who was impossible to satisfy or a co-worker having a complete melt down Robyn kept her cool. She offered a wisdom and patience beyond her 29 years.
When I told Robyn about IgnteHope, she opened up to me about her mother, Diane Rego, who was battling brain cancer. I was surprised, working with and being a member of the cancer community it was rare for me to encounter someone who had such control over their emotions; not letting the fear or stress that comes with a loved one battling cancer spill over into other areas of life. She would update me from time to time on how her mother was doing. She told me about her father, John Rego, and how he was doing. I felt inspired by Robyn and her family’s dedication to Diane. Over the course of the year Robyn had a baby, and her mother had started to improve and was able to spend time with her new grandson. Unfortunately, after three years of her fight with brain cancer, Diane passed away.
A few months passed and I asked Robyn if I could feature her caregiving story in my blog. I wanted to feature caregiver stories because it is the toughest job a person never asked for. I feel it is important to shed light on the caregiver experience to help other caregivers, who are often unsung heroes. She gave her father’s information to me, stating that he was the primary caretaker and really had a pulse on what the full caregiver experience was like. John and I connected and he helped me shape some questions that might be important for other caretakers.
I would like to thank John from the bottom of my heart for being so open with his & Diane’s story, he offers some hard truths and critical insights into the caregiver experience.
John Rego is 59 years old from Ohio, he has a Farm in Brown County and an apartment close to his work at Proctor and Gamble in Liberty Township, where he is a Director of Strategic Development. John was a caregiver for his wife of 36 years, Diane K Rego. Diane was diagnosed with Glioblastoma-Brain Cancer/Squamous Non-Small Cell Lung Cancer/Melanoma Skin Cancer when she was 56 years old. Her battle with cancer ended after three years of medical intervention. I’d like to personally thank John for being so open to answering our questions to shed light on the caregiver experience to help other caregivers.
How did you find out Diane had cancer?
Mood changes, balance problems, depression & erratic behavior and conversation.
Did you know right away that would be the caregiver?
I knew immediately that I would be the caregiver. “For better or worse, in sickness and in health” that was the promise. She would have done the same for me.
Did you have other support?
Our girls were amazing in their care for their Mother and their concern for me. Great friends and family, hands-on friends and family, loving and caring friends and family. We also had a broad network of support from a wider group of distant friends and family through Text/E-mail and Phone Calls.
As a caregiver, what was expected of you? What were you responsible for?
Everything, physical, mental, emotional needs. Financial, medical and logistical needs. We moved to the apartment in Liberty Township, so we could be close to all her doctors and hospitals as well as my office, so I could be home for lunch most days and be able to respond if I needed to run home in the event of an issue with Diane’s health. Getting Diane to & from all her appointments was challenging as her mobility declined.
Was your role physically demanding?
It was the most physically demanding thing I have done in my life.
How were your emotions through the process?
I am a very positive individual by nature, I love to make people laugh and to laugh with them. My wife was always a tough audience but making her smile was one of the highlights of my day. I am almost never sad but knowing that my Daughters were going to lose their Mother just as they were becoming Mothers themselves was very hard to take. Knowing that my Wife would miss out on seeing our Grandchildren grow up was a tremendous sense of loss.
We shared a number of very close moments and made every effort to see our kids & grandkids whenever she felt up to traveling and even when she didn’t feel up to traveling we went just so we could be with them. It was hard for us to travel but I don’t regret having done it.
What was the toughest challenge you faced, and how did you work through it?
Diane became very dark & detached. It became very hard to engage her in conversation and when she did, it was increasingly negative and bitter. I can’t blame her considering what she was facing but it was difficult. I chose to stay positive as much as I could, I am not religious and did not question why she was sick, so I did not waste energy on “Why Her” or Why Us”. I cooked and cleaned and cared for her trying to do the best right thing at any given time. I have always cooked, so making her anything she wanted was something I could do and did with a sense of, “I’m doing something that feels like help”. Eating was critical to keeping her strong and I feel like that was the most essential thing I could do; it brought her joy when she could eat something she liked and not just something she could or had to.
Did she ever act mean towards you?
Yes, quite often. I was insulted and angry at first, but my Daughter Robyn helped me to see that I was the only person she could treat like that and get away with it and she needed to let out all that pent-up emotion at somebody. We didn’t want it to be the Doctors or Nurses. Robyn helped me to not respond to the lashing-out or acting-up with any negative words. In most cases, Diane would process and pile up anger or frustration and be much calmer when it was over. I am a “fixer” and it was difficult for me not to react to her outbursts at first, but I learned how to better choose my reactions.
Were there resources that were available to you (friends, family, organization) that helped you? How did they help?
Our Girls & Grandkids were the best and brought her the greatest comfort and joy!!! My Friends, Laurie & Terry, Diane’s friends, Donna & Pam as well as my Sister Lisa all provided TLC and an empathy and comfort that, as the primary caregiver, I found it hard to get her to accept from me.
Diane had a Friend from her old job, Vern, who was a pastor, he provided a spiritual perspective for her that I could not. We had a Visiting Angel come in twice a week for lunch so I could work a fuller day but I never felt like that really felt like emotional help for Diane, she always said the visits were just “OK”, never much to report.
Was there anything you did to improve the outlook or spirits of them?
I tried to keep a parade of activities, friends & family cycling through so that she always had something or someone to look forward to. When she was up to it, we went out to eat or see a movie. Small, local concerts were nice along with watching kids play in the fountain where we lived. Seeing our girls and the grandkids was the greatest joy by far. Bitter-Sweet but joyful and full of laughter.
Did you ever feel like giving up?
Never once. I believe that commitment is the foundation that allows us to lift heavy loads and not falter. From day one I dedicated my heart and my mind to doing the best right thing for Diane at each moment, based what we knew at the time. Indecision is exhausting, and I tried to be decisive and present even if I made a bad choice; I would course correct toward a better choice once it was the visible. I listened to everything the Doctors told us, listened to what the Technical/Medical/Scientist people in our family thought of the facts (Our Daughter Lindsay and Diane’s brother Harry) discussed it with Diane, decided and moved forward. I tried to avoid emotions like regret, the focus was on giving Diane the best quality of life that was possible over quantity. It’s what we both wanted.
Did you experience any loneliness?
I did not consider loneliness at the time, but I did feel her drifting away, emotionally & mentally.
What helped you manage your role and keep your spirits up?
Our Girls were number one, our friends & family were great. P&G and the people at work were very understanding and even though I continued to work I was given a great deal of flexibility to manage Diane’s care. I had given up ownership of my company that I had owned for 17 years in order to take the role at P&G. My primary reason for making the move was concern over losing our medical benefits under the current President. Had the Democrats won I would have kept my company and my old medical insurance, but decisions needed to be made in order to protect Diane’s access to good medical care. I do not regret the decision based on the situation.
Was your community involved, or did they withdraw?
Our Friends & Family are our community, everyone did what they could, some went well beyond what we would have ever asked for. We both considered ourselves very fortunate to be surrounded by such loving, caring people.
Were there any lessons you learned?
Cancer Sucks. There is no rhyme or reason to who gets cancer. science is amazing, but it’s not magic so ask questions, consider your options and do something. Doctors know a lot, but they don’t know everything, and they don’t know you (or the patient) so advocate for yourself or your loved one, stay positive and lean-in, ignorance is not bliss, it’s stupid.
Build great kids. Live and love every day. Stuff does not matter, people do. Don’t wait, if there’s something you want to do, do it soon, do it now. Tell the people in your life that you love them and show them that you appreciate them. Go visit everyone you know as often as possible, just show up, be there for each other.
What advice would you give to others that are taking on the role of caregiver?
Commit. Accept help when it’s offered even if its uncomfortable. Take time to just be a person with the one you are caring for, it’s hard to shift from Caregiver to Loved One but it’s important and its essential to keeping the connection alive between people. Don’t get ahead of yourself, deal with what’s in front of you, be prepared for what’s next but don’t get too far out over your ski’s, over-anticipation and worry are a waste of energy and emotion. Stay organized, set up a base camp that allows to keep medicines, schedules, appointments and information together and easy to access. Save everything medical, you never know when you might need it during the course of treatment. Listen and Learn, fear is caused by not knowing, once you understand you can deal with whatever gets thrown your way. Be realistic, don’t put your head in the sand- Cancer Sucks but it’s real and it’s insidious, fight with every tool in the box until life is no longer worth living, you will know it when you see it. Never stop loving someone with Cancer, if you do, Cancer wins. Death is not losing, when we stop living & loving to the best of our abilities, that’s losing.
IF you were to be a caregiver again, what would you do differently?
Allow more people to help when they say, “What can I do to Help?”, just have them spend time talking with your loved one, every human contact is healing.
What are you the proudest of that you did in your role?
I am most proud of our Daughters; my wife lives on through them and her grace and nurturing love will be given to our Grandkids along with everyone else in their lives, it will not be lost.
Note from Jenna: Sometimes the best therapy is just talking to someone who’s been there. Imerman Angels One-on-One Cancer Support was created on the belief that no one should face cancer alone. While we recognize that each life situation is unique, we connect those that are predisposed to receive a cancer diagnosis, cancer fighters, survivors and caregivers with “Mentor Angels” – a previvor, a cancer survivor or caregiver who is as similar as possible in age, gender, and most importantly, experience. Mentor Angels provide chance to ask personal questions and receive support from a peer who has been down the same road before. The service is absolutely free and helps anyone touched by any type of cancer, at any stage, at any age, living anywhere in the world. We want to ensure no one faces cancer alone -together we are stronger! Go to www.imermanangels.org for more information