Friday, 9 April 2021

AN AMAZING OPPORTUNITY FOR ONLY 20 CAREGIVERS

I think it was two years ago when a few of us got the idea of creating a retreat for caregivers. Not just any retreat, but one that could help participants understand how they have been transformed by their caregiving experience. Then, COVID19 hit and we asked ourselves, "Can this retreat work online?" I'm so happy to tell you that YES, The Caregiver Transformation Retreat is a reality and it's launching on May 6th. 

A project like this requires passionate, like-minded facilitators whose ideas and presentation styles mesh really well. Our dream team consists of me, Dr. Zachary White (my co-author of The Unexpected Journey of Caring and professor of care communications at Queen's University in Charlotte, NC), Dr. Aaron Blight (founder of Caregiving Kinetics and author of When Caregiving Calls) and Amanda LaRose, licensed social worker (owner and founder of Virginia Oak Counseling Services). Aparna Pujar, CEO and founder of Zemplee, is our technical partner. A software engineer by trade, Aparna is as committed to caregiver support and education as she is to Zemplee, her company that reimagines eldercare with artificial intelligence. Aparna has plans to offer a range of further caregiver training and support opportunities in an online community called Destination Caregiving. That's the site where you can find our retreat. 

The Caregiver Transformation Retreat is limited to only 20 participants. We will offer six one-hour sessions spread over a six week period between May 6 and June 10. Between live sessions, participants will complete short learning activities to deepen their understanding of what the retreat content means to them personally. Participants will share life experiences, laugh, perhaps shed some tears and finally emerge re-energised with a shifted perspective on moving forward with strength and purpose. 

Here is what's on the agenda of the retreat: 

  • WEEK 1 - MAY 6 - INTRODUCTIONS AND ORIENTATION
  • WEEK 2 - MAY 13 - IDENTITY AND RESILIENCE IN CAREGIVING 

  • WEEK 3 - MAY 20 - CAREGIVER COMMUNICATION LITERACY
  • WEEK 4 - MAY 27 - RESOURCES AND SUPPORT
  • WEEK 5 - JUNE 3 - ADDRESSING INDIVIDUAL CHALLENGES IN SMALL GROUP THERAPY EXPERIENCE

  • WEEK 6 - JUNE 10 - PUTTING IT ALL TOGETHER - A FOCUS ON TRANSFORMATION

For this inaugural edition of the Caregiver Transformation Retreat, we are offering the half-price fee of $249 USD to a maximum of 20 participants who give care to older adults. I hope you will consider joining us for this very special learning opportunity! You can REGISTER HERE. 





Monday, 22 March 2021

If You Thought Crip Camp Was Thrilling, You Will Love This Book

 I admit it, I've been feeling discouraged recently. I've been advocating hard for people with disabilities to be prioritized for COVID19 vaccines in Canada, but still haven't had success protecting our son. I was active every day on social media decrying the unfairness of Bill C7, the Medical Assistance in Dying amended bill that incredibly passed into law, now enabling disabled people and those with mental illness NOT at the end of their lives to access MAiD. Never mind that they aren't entitled to any services in the community that could offer them the support they need to LIVE a life with dignity and comfort. (Home care is not in the Canada Health Act, so not a right.) Sometimes it just seems an impossible hill to climb, protecting the lives of disabled people we love by changing the system. 

So maybe it was fate that I received a book in the mail last month with a letter attached that included a request for my review. The book is called Our Life Our Way: A Memoir of Active Faith, Profound Love and Courageous Disability Rights by William R. Rush and Christine F. Robinson. William "Bill" Rush was an American disability rights campaigner from Lincoln Nebraska. Christine Robinson is a Canadian occupational therapist who met and fell in love with Bill at the 1988 International Society of Augmentative and Alternative Communication in California. Bill was the conference keynote speaker who delivered his remarks using a computer speech device called a "Touch Talker" with head stick access. Bill Rush was a man who was born with cerebral palsy and grew to successfully complete a degree in journalism, author several books and change the course of disability rights in America. 



I have a special place in my heart for this book because our son Nicholas is also a user of AAC or augmentative and alternative communication. Nick uses a communication book with words scans that his helpers read. Nick says "Yeah" for the word he wants. But throughout his school years, Nicholas listened to his word choices via headphones and a Dynavox computer would speak his thoughts. Nick had switches to control the computer built into his wheelchair headrest but scanning with head movements through so many possible words to get the right one was tiring and slow. Now, he prefers the book and communication partners who can use a combination of strategies to understand his thoughts, ideas and preferences more efficiently. 


Like other founders of the movement for disability rights in the USA, Bill Rush was a trailblazer. The film "Crip Camp" gave me a riveting glimpse of what obstacles lay in Bill's path in the 70s and 80s - obstacles that he overcame with steely determination and a talent for creating wily strategic pathways to accessing freedom and dignity for himself and others with disabilities. In Bill's kitchen hung this sign for any visitors or health aides to consider: 



Our Life Our Way is about love and freedom. But it's also about allies and faith. And all of these themes intertwine so entirely that living by Rush's rule would be impossible without all of them. "Servant leadership" is the term that Bill coined to describe his approach to advocacy. Church for Bill and Chris was a wellspring of support, hope, belonging and allies. "My Church family at First Baptist is the first place in my life where I have felt a sense of belonging outside of my family," Bill remarked to Chris. Later, when the couple fought hard to marry without giving up Chris' employment and all their assets in a deal to keep attendant care for Bill, members of the church filed in to the government hearing as a show of community solidarity, expertise (the group included a lawyer) and witness. There will be no spoilers here - you need to buy this book. Read it to learn the couple's fate, but also to savour their pure sense of youthful and thrilling optimism and their unwavering vision of inclusion in combination with the power of community and commitment to God. 

There's so much in Bill and Chris' story that makes this book one for our times. Bill's apartment neighbour was a KKK conspiracy theorist who was filled with hate. Imagining such a character might have seemed crazy five years ago, but not today. Bill had to use all his wits to access help from the law to protect him from this maniac. In the face of white supremacy, racism and ableism, many disabled people today are not so lucky. 

I learned so many lessons about successful advocacy from this book. Most of all I learned about an American hero I had never known about before. And I am filled with hope that if we apply Rush's Rules today, we can come back strong because of our faith, our love, our study of the system and our allies. I feel so much better and I'm going to post Rush's Rules in Nick's room tomorrow. 





Saturday, 13 March 2021

RINGS OF A PLANET: Caregiving in a Natural Disaster

Last year, my friend and colleague Vickie Cammack and I co-wrote a piece about caregivers as first responders in natural disasters. We wrote: "Canada’s ability to successfully respond to the climate crisis depends on the freely given, natural care provided by family, friends and neighbours. These caregivers (distinct from professional care providers) are the true first responders and the bedrock of our individual and collective safety and security."

In February of this year, a terrible winter storm caused widespread power outages in Texas. Diane Stonecipher is a resident of Austin and this is her story of caring for her medically complex son through life-threatening cold at home, without electricity. Thank you for sharing, Diane. I am so glad you are all OK now.  



The thing about living on the edge is that it becomes a place that you adapt to. You do not always feel the fragility on a day to day basis until you are pushed beyond the boundary of it. This rarely comes with a warning. Being on the margins, on the edges of what people can see, takes many forms. For purposes of this writing, it manifests as the edge of medical/cognitive fragility. When you are medically or cognitively fragile or you care for someone who is, the entire society functions on a parallel plane to yours. The worlds are blended in parts, but make no mistake, the dominant place is on the periphery. It takes a lot of energy, focus and intention to stay balanced out there. It also takes resources, support and some luck. 

When COVID arrived, the previously somewhat comfortable edge, became precarious in relation to supplies and physical proximity to others. Words I had never uttered, supply chain and food scarcity, became full-time obsessions. My usual subscribe and save subscriptions were gutted; no diapers, wipes, dry pads beyond my already impressive stockpile. Medication shortages with dire consequences as well, access to nourishment that cannot be readily substituted for. I had no place to put an extra fridge and no energy to scour any harder than I already did. In the space on the edge, which is already narrow and slippery, any glitch has repercussions. That said, acclimated to the edge, one relies on resourcefulness, minimizing expectations and a measure of resignation. 

In a bit of irony, as we righted the circumstances and hunkered down in the pandemic, I was feeling a little less isolated and soon, settled on the ledge of the edge again. When the winter storm warnings came for snow and cold temperatures, my concerns were mostly keeping the house and our medically fragile son warm. My work would be cancelled, my husband could work from home. I had food, water, plenty of batteries, candles, lanterns and blankets. We did all of the right things for our pipes and plants and went to sleep amidst gently falling snow. 

At approximately 3:00am on February 15 the bleep of the power cutting off woke us up. Not too concerned at this point, we both went back to sleep and I awoke @ 4:30. There was a lot of snow, so it was oddly “light” outside. Nonetheless, there was no heat and the house was cold. There was water pressure enough to put a kettle on the gas stove. I made coffee, had cold milk, energy bar and scanned the street for lights anywhere. At that time, there were lights behind us, but not to the south of us, so I had hopes that this was a temporary outage, and thankfully, the snow had stopped. I made our son’s breakfast as best I could with light from a camping lantern and lamented the dead computer, land lines and cell phone that needed charging. 

 At first, it all just seemed inconvenient. I would not be able to put his warming blanket on him, heat up his food, turn his music on or use the Ipad. Obviously we were not leaving the house; we would adjust to the cold and quiet and get the phone charged to see what was happening. Soon enough, it was obvious that this outage was not temporary and the end of it was at least a day away. Immediately I was making a mental inventory of what we would need to provide our son’s care and keep him warm. Feeding would be the same, toileting more challenging than usual, without water, no bathing, and no end point. The house continued to become colder and the forecasts for the next several nights in to the single digits. 

I was freezing, but without body fat, ability to move and the temperature regulation center in his brain, our son was our singular focus to keep him warm. Our neighbors offered a room in their house and we toyed with the idea of moving him and a large amount of stuff over there, just to be warm. Alas, they had no water and their power subsequently went out as well. We thought about trying to find another place to be, where there was power, but the roads were not passable. The following day, learning that the power was not returning, the roads slightly improved, we thought about it again. The temperature in the house was below 40 during the day and I feared hypothermia. We gathered his food, his meds, his toileting items, his foams for sleeping and a bowel program and thought about risking it. What if we forgot some thing and could not return? What if pipes busted where we went? What if our own pipes burst while we were gone? Looking over the 2 pages of supplies written on loose-leaf paper, we decided to stay. Too many unknowns for a 50/50 shot at success. 

 Once that decision was made, although some doubt persisted, we sunk in to what we always do, put one foot in front of the other. We had the environment that housed our usual rhythm, flashlights, a borrowed sleeping bag and all of the supplies used in any day. The house was cold enough that we lost nothing from the fridge, we kept the pipes dripping and had a gas stove to light. Our radius was about 400 square feet and we maximized its utility. In a sense, we were lucky because our son eats pureed food from a spoon and drinks from a syringe. He does not require deep suction, just a bulb syringe and CPT. He does not have a tracheostomy. 

For our son, lack of heat is life threatening. My toes and fingertips were numb, layer upon layer, there was no getting warm. His daily needs did not let up due to a power outage. He still needed to be moved hourly, was incontinent, had a bowel program, needed changing and 6 small feeds. He still had no way to understand what was happening and for someone whose preferable ambient temperature is about 70 degrees, adjusting to 34 was an all-out effort on all of our parts. He stayed wrapped in a sleeping bag, during the day, warm but unwieldy to transfer and feed. Five blankets at night with my husband, only after the fact, admitting to his fears of smothering. No nightly warm bath; the first time he has missed one of those unless he was in a hospital. 

Days and nights blended together and the only redeeming thought was that sooner or later the power would return. As each day and night passed and our fatigue grew. We knew for certain that our utilities would eventually be restored, hopeful that no pipes would burst in the meantime, we let time lose its grip. In this space, the capacity for gratitude became an essential tool for sanity. When this was over, we would return to our normal place on the edge. The place we have acclimated to. I could also see and feel the suffering of all who would not even have this comfort. Those in war-torn countries, refugee camps, homeless, under-housed, crowded beyond capacity; we were indeed the lucky ones. In our own city and state, people would die cold, alone and in the dark. Family and neighbors would feel helpless and police and firefighters in positions of deep sadness, I suspect. 

I hope that something like this does not happen again, but I doubt that is a given. If it is not a winter storm and power failure, it will be something else. There are many, many people living on the edge. It is not just that we don’t see them, it is that because of that, we don’t adequately address their needs during these circumstances. Just something simple like someone asking why we did not have a generator, as if that would have mitigated the situation, was almost hurtful. 

The thing about the edge is that it is not a fixed place. More like the rings of a planet. The only view you have is the one that you see. To steal the phrase, a view point is just a view from a point, is most apt. With all of our technology and inordinate wealth of all kinds of resources, we need to remember that the rings are part of the planet.

Monday, 8 March 2021

Happy International Women's Day, Caregivers

 


March 8 is International Women's Day and this year, I would like to celebrate the women in our families who nurture us, love us, feed us, drive us, shop for us, and rescue us from mishaps every day of our lives. This year has been especially hard and has demanded a lot of women. We've stepped up and put care first in spite of great challenges with family, work, isolation, illness and all that the pandemic has put in our path. 

What if 3 Wise Men were Women?

What would have happened if it had been three Wise Women instead of three Wise Men?
They would have asked directions,
arrived on time,
helped deliver the baby,
cleaned the stable,
made a casserole,
and brought practical gifts. 

Our mothers do all these necessary things for us, but so do our girlfriends and our sisters. Today, let us celebrate all the kindnesses and all the 'love in action' that women give. These tasks will never be headlines in the newspaper, but as the writer Ann-Marie Slaughter said, "Domestic work makes all other work possible." 

Happy International Women's Day to all who care for others - you are our role models, our teachers, and our loving friends.

SHARE THIS POST WITH THE WOMEN IN YOUR LIFE WHO INSPIRE YOU AND CARE FOR YOU.

Tuesday, 2 March 2021

THE COSTS OF CARING AND THE ERASURE OF ITS EXISTENCE

Last week I happened to read a fascinating article by Jordan Kisner in the New York Times Magazine about 78 year old feminist and scholar, Silvia Federici


I kept thinking about what Federici said about domestic work and caregiving being a form of gendered economic oppression - "an exploitation upon which all of capitalism rests." Federici calls domestic work "reproductive labour" and she describes it as the work that underpins all other work, keeping us all alive and well. But she goes on to say (and this is the kicker): "It’s weeding your garden or making breakfast or helping your elderly grandmother bathe — work that you have to do over and over again, work that seems to erase itself."


Federici proposes "The Commons" as an alternative to our current system of invisible, unpaid labour at home. It's an idea of community in which there is a free sharing of goods and resources based on human need. When Federici's mother experienced a crisis of age and frailty, Silvia and her sister dressed and cleaned their mother's bedsores themselves, helped their mother back and forth from the couch so she wasn’t bedridden, fed her, clothed her, bathed her. Throughout, Federici’s mind turned often to reimagining a different system of health care. “Imagine if we had some sort of structure in the community that could help us! This is one of the things I always had in mind: I’m here in this moment in this town in this country — there must be another thousands of women like me who are going through the same type of agony.” - Read the article in the NYT Magazine

So just as I was mulling over Silvia Federici's ideas about caregiving and community, I met Cheryl Sutherland by chance on social media. Cheryl cared for two beloved partners until they died - she has been in the trenches of caregiving and I asked whether she might be interested in reading the article about Federici and writing a personal reflection on it. She would! Thank you, Cheryl, for your deeply moving and thoughtful reflection. 


The Arbor on Cheryl's Farm - A Place of Memories

Early on in my relationship with Daniela, she shared with me one of her thoughts on love. “True love”, she said, “is being willing to die for the one you love. It is being willing to put their needs ahead of your own.” At the time, I had not yet come to understand that it could also mean sacrificing your hopes, and dreams, your physical and emotional health, or putting certain aspects of your life on hold. Or, worse yet, setting certain things aside forever. I did not realize that it meant sleepless nights and exhaustion so extreme that days or weeks melded into one long strand of time. Or that the valleys of loneliness, pain, and despair would be so deep that there would be no light discernible. I did not know there could be moments of darkness that would alter you forever. I did not fully understand the costs of caring. Until now. 


Daniela died in 2011 after a recurrence of cancer. She was 51 years old. We had been together for 10 years and had shared two cancer journeys together. Two years after Daniela died, just after completing the book I would write to memorialize our relationship journey and the aftermath of her death, I met Heather. Much to both of our surprise, we tentatively began a romantic relationship. I say tentatively, but that relates more to our fear of letting our hearts be open than to the speed at which our relationship progressed. We were both wounded warriors when it came to love, but that did not stop us from falling in love with each other. Despite our fears, Heather and I just knew we were right for each other. The first two years of our relationship were incredible. We camped, we hiked, we kayaked, we travelled. From British Columbia to New Brunswick to California and all over Ontario. In 2014 Heather had to take a leave from her job due to chronic stress and the one thing her physician told her was to get outside and do the things she loved. So we did. We savoured all that life had to offer.


I withdrew from my PhD in 2014-2015 and looking back now, this was the point my caregiving began. Heather needed a clinic manager for her veterinary practice, so she hired me. Heather needed support with her children, who lived with us half-time, so I happily took on this role. In late 2014, Heather’s downhill health journey slowly began. Although it is only now, in retrospect, that I am able to pinpoint this moment in time. As Heather’s health gradually declined, my caregiving duties increased. I willingly took on more tasks, more duties and responsibilities. I was happy to help the woman I loved and I saw it as the sacrifice one makes to take care of their family.


I began to notice subtle health related changes in Heather in 2016 and 2017. She tired more easily. She forgot things. She experienced mind numbing headaches. We both chalked it up to chronic stress. Then in 2018, the issues with her balance and vision emerged.


Heather and I had been planning the details of our wedding over the winter of 2017-2018, but when her medical issues worsened we realized that our original plans of being married on Georgian Bay would need to be modified. I remember the day very clearly. It was the day of Heather’s 50th birthday in late May. It was on this day that Heather finally shared just how unwell she had been feeling over the past few months. In conjunction with seeking immediate medical help, we began changing all of our wedding plans to enable us to be married at an earlier date at home on our farm. We had been engaged since 2014 and our wedding was an experience we did not want to miss. 


I did all of the work to prepare the farm for a September wedding, with some assistance from friends and family. When September 1st arrived, the day unfolded perfectly.




Heather’s health managed to remain stable for that summer and it was in the fall that she had her first appointment with a neurologist. It would not be until the following September, in 2019, that Heather would be diagnosed with early onset dementia. We were crushed. In an instant, our whole world changed forever. In less than two weeks, Heather had to stop working and could no longer drive. She went from being a fiercely independent woman to being cared for by me on a much more palpable level. It was a difficult adjustment for us both. It happened slowly, and then all of a sudden, is how our story unfolded. One day Heather was working and driving, the next day she was adjusting to a life limiting illness. It was unfathomable.


It has been said that grief is the price we pay for love, but what are the costs of caring for our loved ones on a day in, day out basis? In a society that does not recognize, let alone support someone who is caring for a loved one with a chronic illness or palliative condition, how is it that that we actually survive the experience intact? There are intermittent support groups available for carers whose loved one’s illness fits into a tidy category, but that still puts the onus on the carer to physically be able to attend the group. If the group is online, one has to be able to carve out a specific chunk of time to fully participate. I was not able to achieve either goal during the time I was caring for Heather while she was dying. It was mostly just Heather, her youngest daughter, and myself.

In March 2020, Heather developed a respiratory illness that turned into pneumonia. Her illness came just as the pandemic was beginning and in Canada, the only people being tested were those who had travelled outside of the country. We had long discussions with our healthcare provider and it was Heather’s wish that she be cared for at home. She did not want to die alone in the hospital. She did not want to be put on a ventilator. She wanted to die at home if that is what the Universe had in store for her. And I willingly took on the role of being her primary caregiver. There were of course healthcare measures taken to try and treat the pneumonia, but none of them helped. Eventually, Heather was treated as palliative, and that meant injections every two hours and many days of very little rest, let alone sleep. 


Miraculously, Heather survived her battle with presumed Covid, but found herself declining even more quickly than she had been before. We were on a crash course and we knew it, so we opted to make the most of the time she had left. We focused on doing the things she loved.




The truth of the matter is, even in retrospect I would do it all again. I would take care of the woman I loved, making the sacrifices that I did, even knowing the costs. But what I have an issue with is how unsupported my role in Heather’s caregiving was by any kind of official government support. There was nothing. Caring for a dying loved one does not just cost one emotionally and physically, it costs one professionally and financially as well. We do it out of love and we do it because it is the right thing to do, but we also do a tremendous amount of unpaid labour in the process.


Like Silvia Federici’s mother “nobody saw my work.” There would be no official recognition of my sacrifices over the years, nor would there be any during the time that Heather was so desperately ill. There would be no financial support, no Purple Heart of Caring. It was as though my sacrifices were just expected. Not just that as Heather’s wife I was expected to care for her, but that I was expected to do it for free. Without this type of work being officially recognized, in essence, it becomes erased. It becomes an event that never happened.  

What did you do last year?  How do I even begin to respond to that question…


I would encourage us as a society to do what Federici poses: “to dare to imagine another way.” At the heart of caring is the question of what is the value of life. Where is it that one’s priorities should lay? As we have learned during the first year of the Covid-19 Pandemic, essential workers are not the professionals who create wild and fabulous ways of making money. Aside from health care professionals and all of those who support them, essential workers are those who feed our communities, those who care for children and the elderly, those who tend to the sick and dying. Essential workers are those who put their life on the line, every single day, to protect and care for others. And rather than their work being erased, the time has come for this work to be recognized and supported.  


Cheryl Sutherland MA, PhD (abd): My path in life has led me to caregiving, but I am also an author, a photographer, a mother, a social justice activist, a farmer, and an avid lover of animals and the natural world. I believe that love can change the world.


 


Friday, 19 February 2021

Ntl Caregivers Day: The Power of Words

February 19th is National Caregivers Day in the USA. For the occasion, I began to think about words that hold power when we say them and words that hold power for us when we hear them. 


We know that people we love and care for sometimes live with great suffering and fear. We can give comfort like no one else, because we know our loved ones so well. We can say...

You are safe. 

You are loved. 

I am right here beside you and I'm not leaving. 

The person we love will know that he or she is not alone and that they will be comforted throughout the uncharted waters of an illness journey. These words only have great power if they are spoken by a family caregiver. A stranger saying the same words will just be a stranger talking. 

What are the powerful words that WE need to hear on our darkest days of emotional and physical exhaustion?

I believe you. 

Let me help you. 

I see what you do every day. 

Here is dinner and a jug of margaritas (seriously!)

"I believe you" is a healing phrase for the heart of a caregiver who struggles to describe a new symptom or to communicate a mystifying reality of caring at home, alone. "Let me help you" are words we wish for every day. The offer of help without being asked is a great gift for anyone, but especially for caregivers. My sister had a health emergency in her family and I set up a website for her called Take Them a Meal. Friends could sign up to bring dinner any night of the week, indicate what food they proposed to deliver and then leave it on the porch in a cooler for the family. Everyone pulled out the stops for my sister - people delivered roasts and cookies, casseroles and cakes. But the best offering was "lobster enchiladas and a jug of margaritas." Something about that menu was so brazen and so delightful. It spoke to me of solidarity, optimism and determination. And those are just the things we need most in the thick of caregiving. 

Happy National Caregivers Day - I hope you hear some lovely words and feel the love of friends and family today. Remember that there are two people who need care in a caregiving relationship and one of them is you. If you are alone with your loved one, speak words of powerful comfort for both of you.


Monday, 15 February 2021

Illness Experiences + Emotions = Treatment Choices

Me with my Dad

One day when I was 17, I was home alone with my Dad. I was lying on my bed reading and Dad was in his living room arm chair. At that time, my father was paralyzed on his right side from a series a strokes and his speech was reduced to sounds like "Ah ahhh" which he used creatively to communicate nuanced agreement or dissatisfaction. That afternoon, I remember hearing an unfamiliar noise - an unnatural guttural sound that startled me into running down the hall. I stood at the entrance to the living room, breathing hard, rooted to the floor. My father's head was arched back and his legs were splayed, jerking rhythmically. I don't know how long I stood watching. I thought my father was having another stroke. But it wasn't a stroke - it was a seizure. 

Years later, I was sitting at my kitchen table sipping a cup of steaming coffee. I remember the delicious feeling of freedom, of relaxation, of gratitude. Nicholas was only two years old but it was his first-ever day of school. His severe disability provided an entry ticket to a small and specialized pre-school for children who would benefit from therapy and whose parents needed a break. Nick never slept and so we ticked all the boxes for the program. Suddenly the phone rang, rousing me from my reverie. It was the school director. "Nicholas is an ambulance on his way to the children's hospital - he's had a seizure. No, I'm not sure how he is now, but I told the paramedics that you would meet them at the ER." I remember all these things: tight fists on the steering wheel. Counting out loud at the red lights, saying "Come ON". Fearing mad with worry that Nick had suffered more brain damage and that he would never again be the boy I knew. 

Nick's pre-school graduation photo

I raced through the sliding doors of the ER and I heard Nick before I saw him. His wail told me that my boy was OK - he was himself. The consultant neurologist recommended a watch and wait approach. "He may never have another seizure", she said. 

But Nicholas did have another seizure. And another. "It's epilepsy", the neurologist stated quietly. But I didn't want to hear her or accept her diagnosis. "I don't want Nick on this medication. I can handle anything about his disability...except this...it's about my Dad..." and I started to cry. 

We are all products of our experiences and if we have care experiences that were difficult, or if our treatment choices turned out badly, or if we witnessed a traumatic event, then those things are going to affect our feelings and our choices as caregivers moving forward. We are human, after all.

In my case, it helped me manage my emotions to tell myself that each new diagnosis or symptom was unique. I was not reliving my past, I was helping someone I love to manage a deeply personal health challenge. I know that fear, even perhaps immobilizing terror will likely be a part of my future care role. But I've put a lot of time into reflecting on the idea that the past is the past and now is now. Somehow, that idea gives me some armour to wear when new symptoms arise and old demons threaten to haunt our family.