Debbie’s Story: The Transformative Journey of Caregiving and Self-Care

By Debbie Rayburn

“Do I have the strength to continue this journey?”

That was the question that echoed in my mind. On the inside, I was emotionally and mentally drained. I felt depressed. I didn’t think I could take on another change or disappointment, and some days I just felt numb. On the outside, I experienced excessive hair loss, eczema, chronic fatigue, weight gain, and my body was tense most days. Looking back, I could have been in what is otherwise known as “Caregiver Burnout.”

Our son was 10 years old when he was diagnosed with Becker Muscular Dystrophy and neurological challenges. I was in the midst of menopause at the time. At first, when we got his diagnosis, shock set in. I went numb and felt robotic. I constantly felt on the brink of tears, and they flowed unexpectedly. This was a very dark time for me. I had so many questions for which there were no immediate answers: “What will life look like moving forward?” “Why would God allow this to happen to our son and my family?” It was a fierce internal battle to trust God and not go by my feelings or my thoughts of feeling abandoned by Him. I had no clue about what direction my life, my son’s life, our family’s life was headed in. I felt in the shadow of the scripture that says:

“I will lead the blind by ways they have not known,
along unfamiliar paths I will guide them” (Isaiah 42:16, NIV)

It took some time, but I recovered from the initial shock and sought professional counseling for myself. I felt the need to take action, striving to keep our family in the rhythms of a normal life – whatever “normal” would be for us going forward. As my son’s needs increased, I found myself in a flurry – setting up and attending numerous medical appointments, taking care of other family responsibilities, and trying to keep up with the demands of my full-time job in finance. It was very difficult to balance everything. Maybe I kept busy to feel in control or just to keep my mind off the difficulties I could anticipate. One thing I learned was that I was feeling a “loss.” I pictured motherhood with me seeing our son experience the typical milestones in life, including attending doctor’s appointments for a fever or a mild sports injury. However, that wouldn’t be our story. Reality was quite different and constantly changing.

It quickly became apparent that either my husband or I would need to reduce our working hours to keep up with the increased requirements for our son’s care. It made sense for us that I switch to part-time employment. This was our pragmatism in action. On an emotional level, though, it was tough. I had been preparing for and was feeling ready to take on a full-time position as a Financial Planner. This had been a career goal, but due to the growing needs at home, I had to let it go. Disappointment and anger set in. Another dream lost. “God, haven’t we lost enough?” I struggled with how to embrace James 1:2 (NIV):

“consider it pure joy when you face trials of many kinds.”

We would be facing trials, and more immediately had to deal with the question of how we would manage financially to meet our new and growing obligations. We sought financial advice and cut back our expenses as much as we could. We also had to factor in the expense of renovations needed to make our home wheelchair accessible for our son. Costs and considerations were mounting, and the more difficulties we faced the more alienated I felt dealing with everything.

We were booking cardiologist and respirologist appointments for our son. And whenever we got negative reports, the unexpected outcome of these appointments would take me extra time to process. I had to reconcile my hopes with what I learned to identify as another loss and the sinking feeling of sadness. I had to learn to purposefully plan and give myself permission to keep my schedule to a minimum, allowing more rest time to either take a nap, go for long walks or journal. I just needed a way to recalibrate so I could manage the weight of my caregiving responsibilities.

Not only was I caring for our son but my brother as well. Ten years into our son’s care, health concerns arose for my brother, and I became a long-distance caregiver to him. Two years later he had a stroke. My husband and I felt the best way to accommodate our additional caregiving responsibilities would be to have my brother move in with us. It was an adjustment for all of us. Most days, I had to help my brother with reminders around his safety such as using his walker. I also helped set up his program visitation to help with his rehabilitation and scheduled medical appointments. His leaving the house to attend day programs allowed me to have time with our son and time for myself.

Things were far from perfect, but they felt at least somewhat manageable! And then, just as it felt I might have found a family rhythm that was workable, more unexpected news came.

My husband was diagnosed with bladder cancer. I tried to stay in the moment, positive and supportive on the outside but, on the inside, I was broken. When I heard the frightening word “cancer,” it felt like the end. I started asking the questions, “Why?”, “What if….?” and “How will I manage?” These thoughts had to be harnessed, not stuffed, otherwise I knew I would spiral into a very dark place. Over time, my fears diminished. I held desperately to Psalm 56:3 (NIV):

“When I am afraid, I put my trust in you.”

Praying with my husband and borrowing from his positivity reassured me that no matter what the outcome, things would be alright.

As I am writing this, our son is going through chronic physical and emotional pain. Seeing him in this state is very difficult. I go back and forth between worry and concern, and I often wonder if I have done enough to help him. What helps me maintain perspective and faith is singing “This world is not my home; I am just passing through.” Also movement helps me! When questions come, I go for a long walk and just talk to God to help settle these emotions of helplessness. When I can do this, my heart is at ease and my mind becomes clearer. “Lord, my strength and my fortress, my refuge in time of distress” (Jeremiah 16:19, NIV). I am extremely grateful and believe I would not be where I am today if not for God’s strength.

I must remind myself that I am not alone. I have my husband to walk this road with me. He is now in the second year of a three-year treatment program. He is doing very well with no signs of recurrence. I know I am fortunate to have his support. Some people are left to caregiving on their own or with minimal support. This can make it incredibly difficult to save the space for your own care and avoid burnout. If I could give advice to my younger self, it would be, “Debbie prepare yourself for long-term caregiving.” I would consider what small steps I could take to build the mental, physical, emotional and spiritual strength needed for the longer haul. I would tell younger Debbie that she and her role as a caregiver will be extremely important to her son and family. I would impress on her how much they would need her to focus on her health and encourage her to make time for and take care of herself. If you’re reading this, heed what applies; that’s my advice to you as well!

There are many reasons why caregivers do not ask for help. There can be a societal stigma associated with admitting that one needs help caregiving. Caregivers might worry about being judged. I have felt this. They may feel marginalized if they reveal their struggles; if the caregiver has asked someone for help and judgment occurs, the caregiver may not want to risk asking again. In some cultures, people can feel as though asking for help is a sign of weakness, an inability or failure to fulfill traditional caregiving roles. It is important to find what will work for you and what ultimately helps not only you, but the one(s) you are caring for.

When I stop to think about it, I realize that I have been fortunate to have helpful people around me during this journey. I have been blessed with a circle of care that includes supportive extended family as well as good friends who have regularly prayed with me and listened to my painful, sometimes repetitive experiences. They have wiped my tears. They have celebrated our victories. I have had sound advice from other family caregivers and have learned from their experiences. I also have received helpful input and guidance from health care professionals on my own mental, emotional, and physical health. This has been just as important for those I am caring for as the actual care and service I offer them!

It helped me find ways to relax, refresh and have fun. Focused time with my husband was a need also, but that was easily strained due to the demands of caregiving. To remedy this, he and I looked to our mutual interests: being in nature and exercising. We parlayed these into hiking and ballroom dancing, which we both thoroughly enjoy. I find gardening, sewing, and cooking quite therapeutic as well. It also helps that I am focused on better nutrition and have improved awareness of my diet.

In a practical sense, I am trying to cultivate peace by being more mindful about my anxiety, my impatience and stress management. I know I’m in the “danger zone” when I hear sharpness in my tone or abruptness in my answers toward someone. To avoid caregiver burnout, I rest when I need it. I have adapted as life changes, and I strive to live life to the fullest.

I also have learned to be more discerning when it comes to who I share my heart with because not everyone has the capacity to handle the intensity or emotion of our family’s situation. Spiritually, holding onto God’s promises, singing, listening to songs, and praying through many tears stabilizes me and keeps me grounded. On the tough days when it’s hard to pray or get the words out, listening to hymns or worship songs comforts my heart.

My struggle to balance caregiving with my own self-care transformed me as a person. My husband noticed and my friends did as well. They saw how I was handling my journey and encouraged me to start a Facebook group for family caregivers. I call it, “Caregiver Timeout,” with the theme of “Moving from Striving to Thriving.” The group has been together since 2017 and has grown larger than I would have ever imagined. Together, we explore key topics such as emotional, financial, mental, physical, and spiritual health. The group also provides a list of self-care resources and facilitates connection for caregivers through group or individual conversations. Through community, we are helping to diminish the feeling of alienation that can be associated with caregiving. Friendships are being built and hope is being shared. Just two days ago, I spoke to a mother in the group who has two boys with Muscular Dystrophy. I may not have met her if not for this group!

Before our son’s diagnosis, I had very little exposure to those with disabilities. But through caring for our son, I see how vulnerable someone is with a disability and my heart has become more compassionate.

One of my favorite quotes really reveals just how much caregiving is a part of all our lives in some form or another:

“There are only four kinds of people in the world. Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.”

- Rosalynn Carter, former First Lady, wife of the 39th U.S. President, Jimmy Carter

This is so true! My life is much different than I ever anticipated or planned. I am in a season of caregiving, and I have accepted that this is my journey for now. I have been stretched in every area of my life and, at times, to the point where I’ve thought I would not be able to continue giving. “We are hard pressed on every side, but not crushed; perplexed but not abandoned” (2 Corinthians 4:8, NIV). God is enabling me to let go of the need to control every area of my life. My challenges have mounted, but I have fought to have my faith grow in proportion. It is not always easy to choose to trust God in very difficult circumstances, but it is possible. Even when the road is long and the times are dark, my hope is that we can sincerely say, “But as for me, it is good to be near God. I have made the Sovereign Lord my refuge; I will tell of all your deeds” (Psalm 73:28, NIV).

Debbie Rayburn retired from a career in banking after holding many positions, including Executive Account Manager. She is devoted to her husband, David, and son, Ricky. Debbie was baptized in the Toronto Church 33 years ago. Her faith has been her guiding light, shaping her actions and outlook on the world. Debbie is a dedicated lobbyist for the special needs community as well for family caregivers. Her advocacy has made a meaningful impact, creating positive change for those who need it most. Since retirement, she has explored and taken on new interests such as ballroom and Latin dancing, hiking, therapeutic touch, and hospice volunteering.