10 Pieces of Advice From a Young Caregiver

Valuable Lessons I Wish I Never Had to Learn: 10 Pieces of Advice From a Young Caregiver

 

 

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 tomorrow.
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.
The other night, while talking to my husband, I started reminiscing on some of the exceptional life lessons I learned throughout it all, the things I wish I could have told my younger self, 23 years old, so frantic and concerned, those dreadful two years ago when my whole world collapsed. I wish that I didn't have to learn this all so young, but I know that my experiences can help other caregivers. My mind starting racing, and there was a surplus of things I would say, if given the opportunity. And thus began this blog.
1. Always Keep a Sense of Humor. Just recently a family friend asked how I was able to see the sense of humor during such a difficult time, and my answer was simple: You either laugh at things or you cry about them, it's as simple as that. With my mom, the situation was unique, because her 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 such an infectious sense of humor, laughing and smiling throughout the entire journey.
2. Find Your Cancer Friends. One of the first things I did when my mom was diagnosed was find a support group of young adults who had loved ones with stage 4 cancer. Saying that it "helped me" would be the understatement of the century. We met once a week on Wednesday night, and I looked forward to it every week. During a time where I felt like a lot of my friends and 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 Shivas, I'm proud to stay that those "Wednesday night cancer friends" are now my life friends.
3. Manage Your Expectations. To put it frankly, people who you expect to be there simply won't be. And people who you never thought would be the ones you lean on the most will be the first ones in line. My grief counselor said it best from the very beginning when she told us to manage our expectations wisely, and I can still hear that phrase echoing in my head. I've managed to bring it into other aspects of my life, as well. It sounds horrible, but when life throws you a curve ball, if your expectations are unrealistic, you're going to strike out. Expecting too much from yourself and others will undoubtedly lead to disappointment. And with that comes...
4. It's Okay to Be Protective and Picky. The journey of terminal cancer is one that evokes a lot of emotion. It's a sacred time, a peaceful one, even a special one, and we learned early on that 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 that they're bad people, it just means that 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. At the end of the day, this time is trying and gloomy enough -- why surround yourself with people of the same?
5. Be Realistically Positive. When the going gets tough, 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. Remain hopefully optimistic and realistically wise.
6. Find a Specialist and Be Your Own Medical Advocate. 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 used to joke that we were more well-versed in clinical trials and neuro-oncology than half of my mom's doctors and, to a degree, it was true. We read books, we talked to people who had gone through the same type of cancer, and we 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. Remember, not all doctors are created equal.
7. Take It Day By Day. I'm a planner. Ask anyone who knows me and they'll attest to that fact. I'm the friend who plans dinners, nights out, vacations. And, let me tell you, when it comes to cancer, you cannot plan. My friends learned very early on that I was no longer capable of being the person to plan months in advance. That lifestyle applicable to a person with a sick parent or loved one, simple as that. But, with that said, 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 and the outside. 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 newfound 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 through 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 were out to dinner when we started a trip down memory lane, talking about some of our favorite memories with our beautiful mom. That conversation led to an evening of going through old photos, and 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. Last, but certainly not least, is having the complete awareness that caring for someone in their final stages of life is truly the most rewarding and sacred sacrifices you can make. My dad has been my mom's primary caregiver over the years, and I could write an entire novel on the amazement I witness daily by his selflessness and dedication. In three days they'll be celebrating 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 was the most loving and inspirational person I know, and it has been such a privilege to be there caring for her, like she has always been for us.