Total heaviosity. I guess this is something that’s been rolling around my head for a long time – even though I didn’t know it. When one of my oldest friends (to give you an idea of how long we’ve know each other, we used to ride together on the school bus) asked me to share with her my experience as a caregiver to my brother, Charles, the floodgates opened. I spent an afternoon furiously writing down everything that I thought she would find useful in her own challenging situation. I’ve since expanded what I wrote and I’m still working on many parts of what promises to be a long document. I thought that it might be helpful to others.
To many, writing about terminal illness seems like a depressing thing to share and they are right. It is depressing. But others, like me, find strength in understanding and planning. It is easier to face challenges if we’ve done a little mental preparation and some legwork ahead of time. We may not have a firm grasp on our emotions, but we can control logistics. My hope is that this primer brings knowledge and thereby some comfort to those seeking guidance through difficult times. To my regular blog readers: I truly appreciate your loyalty and support – shown via your comments over the past year and half that this blog has existed. Many of you reached out to me after my brother’s passing and I was deeply touched by your tenderness and sympathy. This primer will appeal to a small portion of my readers so please do not feel that you need to Like and/or comment on each post.
The way this will work is, as I write sections, I will post them here on Sundays (a relatively quiet day in the blogosphere). Right now, the complete document is…well, still floating around in my head. When I’ve added something new to the Primer page, I will post the update here on the main page of my blog.
Here we go…
Starting at the Beginning: Why I’m Writing This
When my brother told me – via text message – that he’d been given six months to live after being diagnosed with brain cancer, I reacted by asking – via text message – if he was joking. I remember staring at his message, wondering how to respond. Needless to say, my reply was sorely lacking. My brother, at age 49, couldn’t die! It couldn’t be anything but a joke, right? I’d been conditioned by years of bad movies, books and overwrought television shows to regard the six-months-to-live diagnosis as a pathetic plot tool, a gimmick writers use to eliminate a character who needs to be written out of a storyline.
I was totally unprepared for how to react, process and function with a timer ticking off the last moments of my sibling’s life. I had never known life without him. Furthermore, death had never come close to me. Illness and death were something that happened in other people’s families. Death should be more orderly, more logical – if it must happen, it should happen peacefully and only after a long and fulfilling life and in the order into which we came into the world: first in, first out. Unfortunately, death observes its own rules. We must prepare for death because death will not wait patiently for us to be ready for it.
There was a brief period following my brother’s diagnosis when it seemed we all retreated – or more accurately, we all tried to return to the comfort of an illness-free past. Because my family is scattered to the four corners, with all four siblings living in different states, it was easy to slip back into old routines. This denial did nothing to slow the progression of my brother’s disease, of course, and it became apparent (thanks to the urgings of a concerned friend) that action needed to be taken. I hadn’t been totally idle during those surreal weeks. I had spent them researching (as did the other members of my family) glioblastoma multiforme, an extremely malignant and fast-moving type of brain cancer. It felt like a hopeless situation.
Despite what I was reading, I was determined that my brother would beat the odds. My brother was young, healthy and he loved his life. When Kel and I left home to help him, I had no clear plan, no idea of next steps and I was scared out of my mind to face my brother. I only had the vaguest idea of a plan, based solely on a book I had read written by a brain cancer survivor*. So, I went to Utah with the idea, if he’d let me, that I’d get my brother to follow a treatment path similar to the one described in the book. It was like finding myself on stage in front of a full house during amateur night at The Improv. Dressed only in my underwear.
I didn’t immediately assume the large role I was to play in his journey – he wouldn’t hear of it – and it felt initially as if I was just an observer of his fate. Eventually my family and I became more than bystanders and avid internet researchers. We became his advocates and caregivers and we were a formidable team. I realize how lucky we were to have each other’s support – to have our own strengths and talents to lend.
We were by no means perfect, but our aim was to provide love, care and guidance, and I think we succeeded. What follows is a description of our “on the job training,” what my family and I learned as we first tried to save my brother and then as we tried to make his last days as safe, comforting and loving as possible. The standout thing that I learned is that it is better to plan and be prepared. It is unpleasant to spend any moment out of our busy days planning for the end (of ourselves or of friends or loved ones) – but doing so makes the process easier on everyone, reduces stress, frees time for what is important (being with your loved one) and cushions a very hard blow.
*Ben Williams, author of Surviving “Terminal” Cancer: Clinical Trials, Drug Cocktails and Other Treatments Your Oncologist Won’t Tell You About
I am not a nurse, nor a physician, nor a therapist – and I didn’t sleep at a Holiday Inn Express last night. In other words, I’m not an expert. I’m writing strictly from my personal experience and from what I learned along the way of a two-year journey from diagnosis to death. It is offered as a guide and resource. Please read with care and always do your own research – it certainly is not exhaustive. Each person’s situation is different and calls for different methods and solutions. If you find any glaring errors or typos, please let me know and also feel free to add your own thoughts or experiences in the comment section below.
Some of this information may not be relevant to those living outside of the United States.
Finally, apologies to those closely involved in this experience for any errors caused by my faulty memory. Those were swift-moving and stressful times and I’m sure that I’ve forgotten some things and misremembered others.
To visit A Terminal Illness Primer for Caregivers Page, please click here or go to the header section of the blog.
Coming Up: After the Diagnosis