Tag Archives: brother

A New Page Coming to AURV: A Terminal Illness Primer For Caregivers

Lily Pad, FlowerTotal 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

Caution:
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

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Happy Birthday

Charles

How do you celebrate a birthday when the celebrant is no longer Here?  Though time has ceased to tock forward for him – my brother will stay 51 for as long as I am alive – it still feels right to honor the day that he came into the world.  His passing does not lessen his impact on my life.  New memories will not be made, but the old provide comfort and smiles and tears.  Happy birthday, Charles.

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From 10k to Ten Mile

Ten Mile Wash, EveningI thought that I’d have a lot to write about after the weekend memorial for my brother, but it turns out that I don’t. I feel emptied out instead. There are only the details, big and small, that make up a trip. I thought I’d take lots of photos as I made my way through the scenic 10k; I didn’t pause once. And I thought I’d walk at least half of the race, but I didn’t. I ran it straight through.

There were nine of us (plus Ike) who completed the 10k and a support team of three who shuttled cars from the Start to the Finish and who cheered us in as we crossed the finish line and reached for our medals.

Afterwards, there were my brother’s friends waiting for us at Ten Mile Wash to drive us down into the sand and rocks to show us the spaces that meant so much to my brother. It is stark down there. Stark and harsh and bleak but clean, beautiful and heartbreaking.

The first stop was the site where my brother’s dog (Pooper) was buried years ago. Each of us carried a rock to add to her cairn. The second was a hollow, a cathedral interior of swirling red scooped out of bare rock called The Fishbowl (renamed The Chuck Bowl). If it wasn’t before, it certainly is now a sacred site. Something of my brother remains in both places. I felt him very strongly that day and understand him just a little bit better.

Back up above the wash there was food and beer and scotch; a blazing sunset fading into orange and pink as a blazing fire reached into the sky. There were dirt bikes and trailers, four-wheelers and one porta-potty perched in the bed of a pick-up truck. There were tears and hugs and memories and the persistent gnaw of loss. But the next day, as the fragile light from the morning sun crept along the rocks and as we pulled away from camp, there was relief and calm and a kind of joy.

Little Grand CanyonNear the Finish Line, Buckhorn Wash.

Kel & Ike, Finish LineKel & Ike cross the Finish Line.

Family GroupThe family post-race.

Race Bibs, MedalsMy bib and medal; my brother’s bib and medal.

Ten Mile Wash OverlookOverlooking Ten Mile Wash.

Pooper's GravePooper’s grave site.

From Pooper's GraveLooking out at the Wash from Pooper’s Grave.

The FishbowlInside The Chuck Bowl.

Flowers & AshesDesert flowers and ashes.

The Wash, MorningThe Wash in the morning.

CampCamp.

Tire Tread

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(Eating Vegan) Under the Sheltering Sky

Two Cookie-cookies

It can be challenging enough to feed Kel and me while we are on the road, but what about feeding 10 or 11 or 15?  In a place with (count them) zero restaurants, convenience stores or a bright and shiny Whole Foods stocked with vegan salads, hummus and whole grain bread?  Now consider that most of those I’ll be feeding are carnivores.

To celebrate my brother’s life, a big group of us – including many camping greenhorns (I’m among that number) – are heading south into the desert of Ten Mile Wash for a few days to spend time in a place my brother loved.  And before we do that, we’re running, walking or strolling The Little Grand Canyon 10k.  An army fights on its stomach; we have to eat.  By my count we’ll have two breakfasts, two lunches and one dinner out in the boonies.  I’ve cooked in small kitchens before, but the camper kitchen is a little snug, so I’m planning on bringing everything down in a nearly-finished or finished state.  Coolers will be clearly marked with “breakfast,” “lunch” and “dinner.”  Plastic bins will have almond butter, mixed grains, trail mix, dried fruit, utensils, kitchen towels, wet wipes, foil, freezer bags, a cutting board, knives and of course, lots of dog food for Ike.  He has to eat, too.

I planned out my menu several weeks in advance and in the week before the trip, I’ve been preparing and pre-baking and -making what I can.  I started with dessert first (makes sense, right?) with crazy Cookie Cookies from The Complete Guide to Vegan Food Substitutions.  Along with Double Chocolate Cookies with Blueberries and Mini Dark Chocolate Cashew Cheezcakes  (based on a recipe by Somer at Good Clean Food - who toiled away in her kitchen to develop these just for me; her selfless family did the taste-testing), our sweet teeth should be well-satisfied.

Mini Chocolate Cheezcakes

Mini CheezcakesBreakfasts will consist of mixed rolled grains with dried fruit and almond milk, whole grain bread with cashew and almond butters, apples, bananas and yummy raw bars featured in a previous post; plus the amazing Cookie Bites from a recipe by Erika at Good Clean Food.  My friend Sue specifically requested coffee so I’ll be bringing down a pound of Two Creek which serves up a proprietary blend from Jack Mormon Coffee.

Two Creeks Coffee

Cookie Bites

BBQ Tofu in TortillaFor lunch on the first day, we’ll have BBQ Baked Tofu Sandwiches from The Real Food Daily Cookbook, by Ann Gentry, served on Ezekial sprouted (wheat-free) tortillas (these are my new favorite thing) loaded with avocado, arugula, red onion and an amazing ranch dressing also from Real Food Daily.  Black bean potato salad with arugula pesto should compliment the sandwiches nicely.  That recipe is courtesy of the Forks Over Knives: The Plant-Based Way to Health cookbook.  We’ve got some gluten-intolerant folks coming along and I don’t want anyone to go hungry.

Macadamia Nut Cheez

Red Lentil Soup

We’ll start dinner off with a few slabs of Macadamia Nut Cheez, another recipe from the good folks at The Complete Guide to Vegan Food Substitutions.  It can get pretty chilly in the desert as the sun sets, so I’ll employ one of the camper’s burners to heat up a big pot of Red Lentil Soup also from the first Forks Over Knives cookbook.  I use green garbanzo beans instead of green beans and add mustard seeds and fresh spinach and cilantro.  It is such a flavorful and satisfying soup and I was able to freeze a big batch several days before the trip.  I’ll serve Curried Couscous Salad with the soup as well as whole grain rolls and the aforementioned mini Chocolate Cashew Cheezecakes.

I’m trying not to stress out too much, but there’s some pressure here.  Most of the people I will be feeding are not vegan and I want their eating experience to be satisfying, surprising (in a good way) and delicious.  I’d love to change some minds about what it means to eat plant-based.  I’d also like to be prepared enough that I can focus on why we are out in the desert.  This is all about remembering and celebrating my brother.

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Down the Road Alone

Utah HighwayI’m lucky. I’m surrounded by beauty and cradled in love. At night the only sound is…nothing. Maybe a whippoorwill or the soft hooting of an owl. The air I breathe smells of warmth and earth and on certain days an indefinable “green.” I have a partner who supports me, makes me laugh and forgives my irritable moments, indulges my silliness and my crazy, roving need to create Something. My time is my own. Our animal companion brims with joy and energy and I can feel his love for us in every wiggle and every wet slurp. I am healthy and strong. I think, “Life is beautiful.”

But then I remember that I am heading down an unfamiliar road. A road which we will all one day take. If we can, we take the journey for as long as possible with someone at our side, but at a certain point, we go on alone. And then I think, “Life is hard.”

I’m traveling that road with my beloved brother. My friend. This time, I am the companion and he will continue on alone. I will walk beside him for as long as I can, for as long as it takes. I don’t want him to go, but I can do nothing to keep him here.

During this time I will be mostly absent from this blog and from the connections I’ve made here. Undoubtedly, I will from time to time come around to my blogging friends to feel the warmth and companionship that has been a bright spot in the past hard, heartbreaking year.

There is a road, no simple highway,
Between the dawn and the dark of night,
And if you go no one may follow,
That path is for your steps alone.
- “Ripple,” The Grateful Dead

(The photograph above was taken during a road trip I took with my brother in September 2011. A lonely highway that crosses Utah, through a salt flat. Our trip followed a 10k race we’ve done together for the past three years. For a long time I have clung to the hope that somehow we will run our fourth race through the canyon this September. I will run anyway – with him as my invisible companion on the road.)

My brother & Me

My brother, Charles, and me after our second 10k; 2 months before his brain surgery.

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