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
Far out – this is amazing. Actually no, scratch that, YOU are amazing – your experience and knowledge will benefit so many people, Annie – the fact that you can write so eloquently dealing with such an emotional topic is paramount….. this is HUGE.
Wow – I know I’m not making much sense in this comment, but I just wanted to say that this is an incredible gift to those supporting the suffering…. you’re an angel.
Awww, Lou. I’m really touched by your note. It’s helped me so much to write about my brother and I worry that I’ve overdone it here – but it also felt like something I could do for others who are (or will be in) my situation.
I don’t even know how to say this. The weight of the loss feels like the weight of the sun. Time etches some of that away, but the hole in the heart stays and sometimes it bleeds. I feel honored to have spent some time with Charles in his last month and to support you how and when I could during the last year.
Loss is something that none of us are prepared to face. This will be such a valuable resource to others in need. So many meet the same situation you did, completely unprepared for what is ahead of them. The guidance and comfort you can offer is beautiful and touching. I love you Annie.
You know better than I, babe. Your experience just made our meeting and our relationship all the deeper and significant. You have no idea the huge role YOU played during my time in Utah. Way beyond the two SUV-loads of nourishment. I’ll always be indebted.
We are conditioned to actively avoid loss and the consideration of death and everything that goes with it. It is difficult to find quality heartfelt information amongst the clinical terminology that humanity tends to hide behind whenever confronted with terminal illness. You are a very brave woman Annie and what you are doing will help goodness only knows how many people to face, connect with and ultimately deal with the progression and loss of their own loved one. I admire you for what you are doing even more than I admired you before (that was heaps incedentally 🙂 ). I think you will be amazed at how many of your dear constant readers are right here with you for your journey 🙂
Fran, the writing has really helped me – not only sort through my emotions but to (maybe) understand my brother better. I think writing this manifesto will help me more than it helps other. Thank you, friend.
What is that airline saying? “First make sure you get the oxygen yourself and then help others”…sometimes we have to deal with our own understanding first before we are able to process it all and help others. What you are doing is bucking the trend of thought and giving bewildered and shellshocked people a place to start the process of understanding and ultimately grieving in a healthy way. You are pretty amazing Annie 🙂
Thanks for this moving & emotional post. Other people will benefit from this post, dear Annie! xxxx
You’re a sweetheart, Sophie.
This is so well written, Annie, I was completely gripped by your words.
I have been where you were. I lost my brother to brain cancer in 2010. He was 50 years old and left behind 3 kids. He was diagnosed in early 2010 and he passed away October 31, 2010. I couldn’t be there for him because I was battling my own health issues. Two days before my 1st surgery, I was told my brother was being moved into hospice care – 8 weeks later, while undergoing a second surgery my brother died. I was 3 days post-op when I stood at his funeral on a cold, rainy, miserable day in early November. My parents looked as though they had literally aged overnight – my father especially. There was bad blood between my father and brother that was never resolved. My brother took it to his grave and now my father lives with the tormented guilt.
I could have used some guidance during that time. I think what you are offering here is a wonderful thing. I mean, when any of us hears about a loved one or friend being diagnosed with something (like I was in 2010), what is the first thing we all do? Jump on the internet and start searching for info as well as pinging friends and colleagues for guidance.
The best thing you can do, to honor your brother and many many other cancer patients who have succumbed to their illness, is spread your experience. I probably would have felt a lot less alone, had I known you back then.
You truly are an amazing person.
Wow – the similarities between your situation and mine are spooky!
Your family has been through so much – your illness and the death of your brother. So much to sort through and process. I guess that part never really ends. I hope that your father can find some kind of peace. It’s no good to hang on to guilt and I have to believe that at the end, we find a way to forgive and to let go. The bad stuff we keep in our hearts is so corrosive and really, in the big picture is so unimportant. I feel for you all and I appreciate you sharing your story.
So true about the internet and thank goodness for it! I can’t imagine what we would have done in an earlier age – go to the library? Count solely on doctors for information?
It is a bit spooky — I thought the very same thing.
We have both been through a lot and I do believe these experiences make us stronger as well as give us perspective — something that is critical in this day and age. I won’t get into it here, but last week some guy on the commuter train threw a hissy-fit. I had to bite back the urge to say, “Really? Seriously????” I could go on but you get the point. His complaint was so petty I felt ashamed for him.
Although I can remember life before the internet, email, smart phones and texting. I feel as though I can no longer live without it.
I look forward to reading more about your journey. 🙂
I know exactly what you mean. One’s priorities shift around, don’t they? We can get caught up in the utter nonsense of daily life – when the really important stuff passes us right by. Wait, I think John Lennon said that (and much more eloquently) ;-)!
Hello there Annie! Well this is a great way for you to manage the after effects of being a care-giver for as long as you have been! Well done – and I shall be following these weekly posts with interest and all my sympathetic support. You appear to have already achieved a great deal and hopefully by writing in this way, you will not only help a whole host of others, but yourself – and Kel, for he too has been involved in his support for you! Hope, having finished the tome – when it gets to the end of the journey – you will seriously consider publishing it. Death, by whatever means, needs to be confronted: it is really then never to be feared as, alas, our culture seems to encourage. As you know, I have been there, am still there, and learning all the time!
Lots of love. Isobel
Isobel – I thought of you many times as I wrote this and I’m sure I will continue to do so as I pound out the rest of it. I would truly love for you to share the “overseas” perspective as I know from our emails that things go a little differently. At any rate, you are right – it is cathartic to write this all down and to sort through everything. There wasn’t time for any of that while it was happening, as I’m sure you appreciate.
Your strength and spirit have been amazing, Isobel. Love.
I am going to love this series of posts. My sister has autism and I am a caregiver for her..obviously a big difference, but a caregiver nonetheless. You are such an amazingly strong woman and I only wish I lived closer. I could see myself hanging around you A LOT and picking your brain for wisdom and knowledge! I can see these posts helping a lot of people, so thank you for sharing your experiences!
Bless your heart, Brittany. You have your own set of challenges, but I know you handle them with grace and love. My brain is yours for the picking any time.
You are one of the bravest, most inspiring women I have ever met my friend. To allow experience to strengthen and to share your emotions the way you do is beautiful
I’m just a scaredy-cat like everyone else – but it sure makes me feel good to read your words, CCU.
Thank you for sharing your experience! People in these type of situations can feel lonely and isolated and it’s so wonderful and giving of you to reach out and share your journey with the public. I am in that sandwich generation who still have children to care for and at the same time elderly parents that need more time and attention.
I appreciate your perspective and I ‘m glad that you were able to spend time with your brother before his passing.
Andrea, I appreciate you taking the time to read and comment. Balancing raising kids and caring for parents has got to be one of the most challenging situations – not to mention finding time for one’s self!
So odd that I opened this tonight to read. Saturday I visited the beach where I had scattered my Mother’s ashes, on the Olympic Coast. For years after I couldn’t bear to go back to that beach. This time I returned with my two youngest sons, who will never know her. But….somehow it felt like my Mom was waiting to meet them. I sat on the beach while they played and it just felt wonderful. My time with my Mom was hard, but I wouldn’t have traded it. I was given a blessing in the years as she faded, to become friends with her. Being a caregiver is very lonely, talking about it helps so much.
I’m so glad that your trip back to the beach felt good – – I guess the time was right. There are a few places I’m reluctant to return to, but I know some day I will. It’s the presence of the deceased in those places that is both so sad yet so comforting.
And you’re right about that precious time with them. It’s SO hard, but in its own way, beautiful. To have been with my brother as he moved on to whatever is next – amazing.
The caregiving process is an emotional ride, for sure. By sharing your experience with honesty and candor, you’ll help so many people. I went through this at a very young age (21) with my mother, and could have used the help you’re providing. Thank you!
It was hard enough at 46! At 21 I would’ve been really at sea. What an especially hard loss.
Yeah, cancer sucks at any age. But that was quite a “growing up” experience…
Thank you for sharing your experience Annie. Even though it takes me back to the times I dont particularly want to remember, there are so many things people need to know and share which work in any unexpected medical situations.
I was a fiercely independent and in control person, driving everywhere by myself, going to the specialists by myself until they decided I needed an MRI. From then on hubbs was along for everything. Even though my Mom was going to be there for the surgery and after, she was in a different country(we dont have family here) and dependent on hubbs. I had to make sure that we invited the friend circle in, else it would be mainly hubbs doing almost everything. It was the best thing that we did.
Mom had to leave after 5 months, so hubbs picked up the cooking duties.. pretty much all duties really. For a few months he was my care giver. He still is some days like last month when I was not able to stand or walk for more than 2 minutes.
I still struggle to accept some of the dependence and changes, trying to find control, logic order in things. And your experiences might give me a new perspective.
Richa, your independent spirit rings loud and clear from your blog. I can completely appreciate how frustrating, angry and sad that loss of control must have felt – being a control freak myself. (That was one of the hardest parts of my brother’s illness. He hated having any one else directing his life.) Add to that the physical pain/discomfort of your illness and feeling as if your own body has betrayed you. Clearly, you are a rock, Richa and you are blessed with a wonderful partner.
From a caregiver’s perspective, it is an honor to help a friend of loved one. It really is the ultimate showing of love for another person. It was hard and wrenching, but I am so grateful to have played that role in his life. I know that he left this world knowing that he was deeply and profoundly loved.
Annie, this is so wonderful. I think you have so much to share with the world and I think you are so strong for putting yourself out there so that you might help others deal with their own hard times and pain. BIG HUGS. xoxo
I can see these posts helping a lot of people, so thank you for sharing your experiences!
Thank you so much. Writing it is helping me, that’s for sure!