This summer I returned home for the first time in 6 years and had the pleasure of meeting Gilly Cannon, who just happens to live near my old neighborhood! She is a family caregiver for her husband, mother, blogger and all around nice person who shares her story of living with Trigeminal Neuralgia (TN). I have heard that a bride marries not only her fiancé, but her fiancé’s family as well. In the same manner, chronic illness such as TN also impacts people other than the patient. It’s a diagnosis with which a family must learn to live – and to come together to support each other.
Thank you, Gilly, for contributing this insightful post!
Normally when you agree to take on a job, you have researched it, examined the job description, negotiated hours and pay, have some pre-job training and /or bring your expertise to your new position.
Hopefully you also have colleagues, vacations, in-service training and a salary, which you hope reflects your years of experience, expertise and job performance and how much your employer wants you.
In August 2011, I found myself in a job with none of those things – the job of caregiving for my husband
On my husband’s birthday – August 17th 2011 he broke the news to me that his trigeminal neuralgia, an incredibly painful, rare facial nerve disease, had returned. He had, unusually for him, kept this from me for two weeks. This meant he had been suffering in silence with harsh, electric, shock-like pain on the left side of his face since the beginning of August.
Jonny says now, he was partly in denial and desperately hoping the pain would go away on its own. I had been wondering why this normally affable, unflappable, reliable guy had been quite the opposite – short-tempered, unfocused and unpredictable. When I finally asked him what on earth was going on – he murmured,
” My pain is back and it’s bad.”
I felt a shadow of dread wrap itself around my heart and a thousand things went through my head. But my first thoughts were practical. I had practice as a caregiver before. I knew what to do. I needed to get Jonny to double his meds and contact the neurologist, who had been taking care of him since he was first diagnosed, 3 years earlier. I helped him make a plan.
I had put my caregiving hat back on.
For 4 weeks the regularly increased medication chased but never caught up with the TN pain. The side effects by mid-September were beginning to ratchet up and TN was ahead of any battle plan we had. I sensed that the TN was going to force us on a different path and I needed to be with Jonny at each new twist and turn. I gave up my paying job and launched into the job of full time caregiver.
Suddenly we were plunged into a whole new world. If medication didn’t work – surgery was the only option. We had to find a neurosurgeon who specialized in treating TN. Now my job was search and rescue – search for the right path, surgeon and surgery and rescue Jonny from the deep dark TN pain hole he was tumbling down.
The first part was easier than the second. Thanks to the internet and our geographical location we had access to one of the large hospitals that had a trigeminal neuralgia center.
The rescue part was more challenging. The only thing that was certain was that the TN was in control and we were not. Watching Jonny’s pain increase and side effects take hold meant I was losing my soul mate, as I knew him. The advocating, problem solving, out-of-the-box positive thinker characteristics needed to become a part of my job description instead of his.
I became the researcher, caretaker, health decision maker, advocate, juggler and nurse.
I realized that it’s not that you have no time for yourself, it’s just that you do not know what time you have.
You cannot make a schedule for someone with a sudden illness, to work their downturns into your routine. So you try to adapt and fit in with them. As a caregiver you respond to each need, each pain, each new crisis as it happens and everything else: your own doctor’s appointments, hobbies, social plans, projects, reading, get put aside.
Although there were many things I gave up, here are some things I did and here is what I learned.
Find your strength and follow your gut
I felt I had no choice but to let much of my routine and needs take a back seat, particularly as our family is internationally flung and we had school age children. As expats we do not have family close by who could be a consistent presence and physical support for us all or provide respite for me. Jonny, therefore, was depending on me alone. I found strength in the depth of friendships I didn’t know I had, to keep moving forward and a strong gut that guided me when experience was sorely lacking.
If you have (school age) children-keep them informed and involved in plans, changes and treatment.
In mid-September 2011, Jonny’s pain from trigeminal neuralgia was beating any attempts to control it. The children and I watched helplessly as he tried to breathe through these attacks.
I tried to protect our kids from Jonny’s pain. But kids are smart. They sense the unsaid and worry about the unexplained. So clarity about where Jonny was up to became a priority and we tried to keep them in the loop with the fast changing landscape. They came often to visit at the hospital when Jonny was admitted for 2 weeks. They googled trigeminal neuralgia and watched brain surgeries on You Tube. They felt empowered in being able to support Jonny and me within their abilities.
Use an online community site to keep everyone updated and a schedule so that they know how they can help with meals /groceries/playdates etc.
As Jonny’s health deteriorated, the concern of our family and friends all over the world, increased. I wanted to keep everyone updated. But the onus of knowing their email addresses and making sure everyone was included, was on me. I was exhausted and overwhelmed with loving texts, calls, emails and visits and could not respond to each and every one. I also knew that brain surgery that had been set for a month later, needed to be moved forward as quickly as possible. With all this in mind, two days before Jonny was admitted to hospital for pain that had spiraled out of control, dear friends came over and helped me set up a page at Lotsahelpinghands.
Here, I could post an update of Jonny’s progress and it was up to our friends to sign up to receive them. They could also leave messages for us and see a schedule of errands that we created for the months ahead. The pressure was off me and many of our wonderful communities around the world who wanted to keep in touch and help, now had a way of doing so.
Research, Research, Research
We found reliable information on hospital.
We read clinical studies from the USA and Japan.
We joined support groups online. There are many people on these sites with access to resources, treatments, their stories and a huge amount of support. It’s really good to know you are not alone, particularly if the illness you are dealing with is not well known or easy to pronounce. Certainly, it is also reassuring to interact with people who know firsthand what the pain, struggles, setbacks and successes are really like.
The reality is that although no two caregiving situations are alike, caregivers have many of the same struggles. And since often nothing seems to go according to plan, it’s useful to know that following your instincts and finding a way to accept help does mean you have found ways to help yourself as well as the person for whom you are caregiving.
About the author
“Gilly (pronounced Jilly) Cannon is an accomplished educator and counselor. Gilly received her degree in Mathematics and Education from the University of Cambridge in England and her certificate in counseling from The National Youth Agency in the UK…
During her educational career, Gilly has been a teacher, math coordinator, principal and founded and directed the learning support department at Carmel International School in Hong Kong.
Drawing on her professional and personal experiences and a British sense of humor, Gilly now focuses her posts on strategies that bring comfort to her readers in challenging times. Her topics range from coping with serious illness and grief to dealing with family, parenting and educational difficulties. The blog has rapidly increased its readership and impact in the broader community and this has led Gilly to her current career as a writer.”