No One’s Prepared for Terminal Caregiving
I was my wife Shearlean Duke’s sole caregiver for the entire 18 months of her battle with glioblastoma brain cancer, and as difficult as that was it has been the highest achievement of my life. I wouldn’t trade the experience for anything; however it’s not something I would recommend to anyone else when there’s an alternative.
I’ve never heard of a patient looking into any cancer treatment, let alone brain cancer, before being struck by it. When stricken with cancer, especially a terminal diagnosis, the horror and immediacy of it are stunning. No one’s prepared for it and when it strikes there is no time to prepare.
Shearlean and I were in disbelief that our recently secure ship of life was sinking out from under us. We felt we were drowning, but fighting desperately to keep each other afloat. The horizon of our future was empty, there was no tomorrow. A grey sky and sea of fatal disease had merged into infinity and we felt we were treading water and wondering how long we could continue.
We thought we were beyond help. We had been cast adrift with a few words from her primary care physician about surgery, radiation and chemo, and 12 months to live. No advice was offered on where to turn or what to do.
We knew nothing about Chris Elliott Fund (CEF), though it was established in 2002, seven years before Shearlean’s August 21, 2009 diagnosis. As primitive as it sounds in 2017, the only advice we were offered was to seek a brain surgeon. We found a neurosurgeon at UW Medicine in Seattle, WA, and in September 2009 Shearlean underwent a craniotomy, and was discharged five days later. We were again adrift on an uncertain course for radiation and chemo at PeaceHealth in Bellingham, WA.
Three years later, following Shearlean’s death February 2011, I spoke with her neurosurgeon after he read my book, Waking Up Dying: Caregiving When There Is No Tomorrow. I discovered that Shearlean and my circumstances were the first time he heard of what his brain cancer patients and caregivers faced following his surgery. It disturbed him so, that he requested that a medical social worker be added to his staff to assist patients and caregivers in pursuing the post-surgery treatment protocol.
I wrote Waking Up Dying because do-it-yourself brain cancer treatment was nearly as foolish as do-it-yourself brain surgery. I wanted others to know about what we learned so they would have an example to follow (for better or for worse) and to know beforehand what they would be faced with.
I don’t recall exactly when I first heard of CEF, but it was probably in 2012, long after Shearlean’s death when I started writing my book. I confess I didn’t pay much attention because CEF’s mission statement then featured curing brain cancer and curing brain cancer was too far in the future for me and current brain cancer patients. They needed assistance (like yesterday – in 2009 and 2002) as Dellann Elliott Mydland knew only too well from her own experience.
With my book as my priority and desired legacy to brain cancer victims like Shearlean, I plowed ahead with writing and publishing. Probably in late 2013 or early 2014, I finally discovered what CEF was all about – at least from a patient’s and caregiver’s points of view. And in 2015 Chris Elliott Fund changed its mission statement to End Brain Cancer to better communicate its full range of services and capabilities.
I remember so well the awe I felt when I realized what CEF offered in the form of its Direct Connect Program and related services. I said over and over to myself, “If I had only known.” I felt like the proverbial man who had reinvented the wheel – exhilarated and dumbfounded all in a single thought.
I first met Dellann in 2014 in the company of Marianne Brudwick who started the Bellingham, WA GLI (glioblastoma) Club for loved ones and family of glioblastoma brain cancer patients. (See Rod’s Story at CEF for more about Marianne and Rod Brudwick, also 2009 patient and caregiver). I helped Marianne start the Bellingham Brain Cancer Walk, now in it fourth year and affiliated with CEF.
I wrote Waking Up Dying to say anyone can do what Shearlean and I did, but readers and reviewers disagreed with me. I thought, based on our experience and the seeming absence of capable and knowledgeable help, that able or not, patients and private caregivers had no choice. Everybody’s path is different and one reviewer saw what I was writing as one couple’s experience from which others could gain insight and find examples of good and bad practices. There wasn’t necessarily any thing “right” about our approach to our situation, but negative examples were also helpful by pointing out things perhaps not to do. Despite the hardships and problems it worked for us and the book documents what you’re up against without experienced allies such as CEF.
Shearlean was 64 when she died and I, 72. Shearlean was a former newspaper reporter and editor, and when she died she was chair of the Western Washington University Journalism Department. I was a lifetime technical writer and corporate communications manager with a lot of management, computer and public relations experience. We both possessed the tools necessary to accomplish what we did: not everyone has those skills or the years of experience in applying them. We were an elderly couple with no children or family entanglements, and were free to act on our own and for ourselves. Rod and Marianne Brudwick was a young couple with three children, and extended local family: apples and oranges. Others examples cover a broad range of personal circumstances.
What I believe from eight years of continuous experience with brain cancer care and treatment is that the services CEF offers are a godsend for anyone facing brain cancer. There are so many better ways to use your time and energy as a brain cancer patient or caregiver than fighting the healthcare system or re-inventing the wheel.
For a brief version of what Shearlean went through and the things we had to struggle with, see Shearlean’s story. There is someone there for you with more information, experience, options and benefits than you can conjure. You cannot do for yourself what CEF can do for you.