My interest for family caregivers started after my husband, Callum, was diagnosed with cancer, and it became a passion after we found out the cancer had metastasized. With the news that all hope for a cure was gone, I was faced with feelings of paralysis, shock and I felt that I was in an abyss of a fearful unknown.
My life wasn’t supposed to be this way. Callum and I were married right out of high school and had both our children by the time we were 21 years old. We’d had plenty of lean years and sometimes our stubbornness was the only thing holding our relationship together. Our deep sense of commitment to family helped us through some very tough times and finally, with a move to Red Deer, the future was bright. New jobs, new home, new friends. We were excited about all the wonderful opportunities headed our way. Our time had come.
September 30, 2005 was a day I will never forget. I was patiently waiting at home for Callum to come home from a doctor’s appointment. The look on his face when he opened the door was pure evidence of bad news. He looked at me square in the eyes and said “I have cancer.”
I stood there, paralyzed by the news. I thought I had mistaken what I heard. “What?” I said.
“I have cancer” he repeated.
I was numb. My brain was numb. My legs were numb. My heart was numb. What I didn’t understand was why I wasn’t crying. That day was just the beginning.
During the three years after the terminal diagnosis, I learned a lot about terminal illness, caring for my husband and caring for me. Well, to tell the truth, I learned a lot about how hard it was to look after me. When I searched for caregiver resources, I found most were excellent resources for learning about practical issues, like wound care, toileting, and how to avoid bed sores. Nearly every single one focused on how to learn to what you needed to know about what to DO when caregiving. Very few resources touched on what it was like to BE a caregiver. How to deal with the sadness that life had forever changed. How to deal with feeling selfish that I couldn’t have the life I really wanted. How to deal with the guilt about my fear for the future and, at the same time, wanting to be 100% positive a miracle was going to happen. Wanting to stand up and scream “what about me?”
Oh yes, I found the “self-care” mantras. “Take a bubble bath. Have some hot tea. Go sit in a park. Take a walk around the block. Eat well.” Again, it was all about “doing,” not “being.” Don’t get me wrong. All that advice is worth listening to and it’s important to make slight changes in your routine and include them. I was looking for more. I wanted the training manual. There wasn’t one.
My biggest fear was that after Callum had passed away, I would have no idea who I was, what I liked or what I would want to do. I had never lived alone. What would I do after spending endless hours looking after Callum and all the extra responsibilities that had been added to my plate?
I started sharing my feelings and questions in my blog, Walking The Journey Together … Alone. The blog helped a lot of people and with the encouragement of my readers, after Callum passed away, I spent 15 months writing and publishing a book, Walking the Journey Together … Alone, Finding Peace, Hope and Joy in the Middle of the Sh**.
The training in counseling, coaching and facilitating workshops combined with my work experience helping people gain insight, self-esteem and confidence even in the toughest situations is what has led me to you, right now.
I want you to know that I have experienced much of what you are going through. Caring for Callum has been the bulk of my caregiving experience. I have also come to realize I was also a caregiver for my father, am a long-distance caregiver for my mom, step-dad and parents-in-law. I am not the primary caregiver for them and I am now learning how to care from a distance – and care for the ones who are the primary caregivers.
The Caregiver’s Lighthouse is a place for you to find comfort and understanding. I am building a community which will gain strength by learning how to help one another. I will be your expert guide to help along the way. You don’t have to do this alone.