Almost two years ago, my life forever changed. My 54-year-old, energetic, outspoken, and selfless best friend was diagnosed with terminal brain cancer, a glioblastoma multiforme. This person was my mother. Although I feel I've been losing her slowly over time, her doctors recently told us that she has begun the “process of dying.”
We start hospice care this week.
As the months have gone by, the anger has subsided, and the overall confusion has passed, I realized that there were two ways to look at the situation; I could sit there and complain and wonder “why me?” (which, believe me, at times I certainly did) or I could learn valuable lessons throughout the cancer journey. I chose the latter.
I've reminisced on some of the exceptional life lessons I've learned through the past dreadful two years — the things I wish I could have told my 23-year-old self, frantic and concerned when my whole world collapsed. I hope my experiences can help other caregivers.
1. Always Keep a Sense of Humor. A family friend asked how I was able to find humor during such a difficult time. My answer is simple: you either laugh at things or you cry about them, it’s as simple as that.
My mother's brain tumor caused her do things that didn’t necessarily make sense. I would ask her why she was putting her phone in the refrigerator and she would shrug and giggle, and so would I. The truth is, most of the time, I wanted to cry, but what would the point in that be?
Although we took the initial diagnosis and prognosis seriously, my mom looked at the situation with an infectious sense of humor, laughing and smiling throughout the entire journey.
2. Find Your Cancer Friends. One of the first things I did after my mom was diagnosed was find a support group of young adults who had loved ones with stage 4 cancer. We met on Wednesday nights and I looked forward to it every week.
When it felt that friends or family were not saying or doing the right things, I found a whole new group of people who completely understood what I was going through. We had the same frustrations; we were experiencing the same emotions; and we were able to be completely open with one another.
When the support group ended, we started meeting regularly for dinners. Two years later, with ups and downs and deaths and remissions and funerals and Shiva’s, I’m proud to stay that those “Wednesday night cancer friends” are now my life-friends.
3. Manage Your Expectations. To put it frankly, some people you expect to be there simply won’t be. And others you never expected to lean on will be the first ones in line.
My grief counselor said it best when she told us to manage our expectations wisely. I’ve brought that advice into other aspects of my life, as well.
Expecting too much from yourself and others will undoubtedly lead to disappointment.
4. It's Okay To Be Protective & Picky. The journey of terminal cancer evokes a lot of emotion. It's a sacred time, a peaceful one, even a special one. We learned early on it's okay to be protective of this time as a family.
Don't be afraid to let go of the people who can't support you, the people who bring you down. It doesn't mean they're bad people; it just means they may not be good for you right now. My family found it so important to surround ourselves only by people who would lift us up. It’s critical to sort out who you can and cannot depend on early.
This time is trying and gloomy enough, why surround yourself with people of the same?
5. Be Realistically Positive. You can either choose to be positive or negative, both have their pros and cons. The overly-positive people I found to be naïve and unable to grasp reality and the negative people were just, well, negative, which is why I learned to be positively realistic.
I learned the facts and knew what the outcome would most likely be, but I went into every appointment, surgery, and treatment with a positive mindset. I knew the statistics were never in her favor, but I also figured she could be that exception. As upset as I was when her decline began, I felt like that positive-realism benefited my overall outlook.
6. Find A Specialist & Be Your Own Medical Advocate. Remember, not all doctors are created equal.
My father-in-law has been through two bouts of cancer and I can vividly remember my mother-in-law telling me on the phone how important it is to get informed, get educated, and be your own advocate.
My dad and I read books, talked to people who had gone through the same type of cancer, and spent hours seeking out medical centers and professionals that specialized in my mom’s type of cancer. By the time treatment options were discussed, we felt informed enough to add valuable content to conversations. And, at times, our medical expertise was taken seriously and doctors tweaked her treatment based on what we had read.
7. Take It Day By Day. I’m a planner. I’m the friend who plans dinners, nights out, vacations. When it comes to cancer, you cannot plan, but I found it helpful to have certain events on the horizon for yourself and for your loved one.
For my mom, it was my upcoming wedding, something worth fighting for.
8. Appreciate the Simplicity In Life. As my mom’s cancer progressed, her enjoyment doing the simplest little activities heightened. I can vividly remember huge smiles spread across my mom’s face when I asked her if she wanted an ice cream cone or if she wanted to sit outside at her favorite restaurant. Recently, she and I have spent hours next to each other in front of her bedroom window, she in her wheelchair, me in the chair next to her, just looking at nature. Her hands and feet move to the beat of the music we play for her on the iPod. She loves watermelon and my dad still feeds it to her almost every single day. She has a new-found love for thumb-wars (she even wins!), Shark Week, and bubble baths with rubber duckies.
It’s amazing how cancer brings people full-circle through life and one of the most surreal experiences I think I’ll ever have is watching my mom watch the world with the eyes of a child.
9. Remember The Healthy Times. Cancer is draining and it’s really easy to get caught up in the “sick times.” A few months ago, my sister and I started talking about some of our favorite memories with our beautiful mom. That conversation led to an evening of going through old photos. I felt so energized by the end of the night.
I had almost seemed to forget that I had well over two decades of memories before the horrible disease, memories where my mom was “normal”, healthy, and very much herself. The truth is, our loved ones live on through our legacy and it’s so important to keep their healthy memory alive.
10. Realize That Being A Caregiver Is An Honor. Having the complete awareness that caring for someone in their final stages of life is truly the most rewarding and sacred sacrifice you can make. My dad has been my mom’s primary caregiver over the years and I am amazed daily by his selflessness and dedication. They have just celebrated their 31st wedding anniversary and their marriage now is more beautiful than it’s ever been, in a way this has brought them closer.
My family was just recently talking about how blessed we felt to have the opportunity to care for my mom, to make sure she’s comfortable, clean, fed, content, and at peace. There’s not a handbook for cancer caregiving, you learn as you go. I’m not yet a mother, but I anticipate it’s a similar feeling, being thrown into the unknown and getting really frickin’ good at it.
My mom is the most loving and inspirational person I know, and it has been such a privilege to be there caring for her, as she has always been for us.
Alexandra Detwiler is a native Michigander, who currently resides in Manhattan, New York with her husband. She works in television development at NBC Universal.