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Memoir of Mourning: Journey Through Grief and Loss to Renewal (Book Review)

Perhaps you fear losing the parent you care for.  Or maybe, you fear your own death as you care for your dying relative.  Maybe you just don't know who you will be when your loved one passes and leaves you alone in the world, without the iden...

Advice for New Caregivers

Today's guest post is by Derek Hobson, BA.  Derek is the editor for ConciergeCareAdvisors.com, a senior care referral agency. He developed a passion for elder care when he became the primary caregiver for his grandmother. Since then, he has sought to inspire fellow caregivers as “there is no success without hardship.” 

When I was 20 years old, my grandmother was diagnosed with a slow progressing form of dementia. She didn’t need care immediately, so we had time to research options. We read books and countless articles, we swapped knowledge over dinner, and frequently talked to our grandparents about how everything would work out given our lifestyles. And yet, when the time came to provide care for her, I could not have been more unprepared.
Although I had a job, I was a full-time student, so work was primarily for a disposable income. Since the rest of my family had full-time jobs and my grandfather didn’t drive, I received all the phone calls and texts. I suffered from more stress than I’d ever experienced before. It seemed like my phone was buzzing incessantly and it was always to help my grandmother. I had to cut back my hours at work; I didn’t have time to spend with friends; I was falling behind in my studies. To make matters worse, I had no one to talk to about it.
I felt like I was not making a difference and that mindset was like a poison, making me grow more and more resentful – of my grandmother and my family. My family only called me if they needed something for my grandmother. I wasn’t getting enough sleep and ate more fast food than I care to admit. I did not understand sacrifice.
Despite all of the time I dedicated to figuring out how my day-to-day routine would change, none of it prepared me for how my lifestyle changed. And the only reason, my livelihood improved was because I started talking about it. From that, I’ve learned a few things to pass on to new caregivers.
  1. Tell Your Employer
No matter what your job is (and even if you don’t cut back on your working hours), tell your employer about the change in your life. If you do get that emergency call to help your loved one, they will be infinitely more understanding.
  1. Nap When You Can
Sleep becomes a challenge, especially if your elder is suffering from dementia like mine was. Their sleep schedule changes too – some of the worst emergencies happen during the early morning hours or mid-evenings.
So if you come home from work or school and someone else is taking care of your elder, then nap – you’ll be glad you did.
  1. Make Time For Yourself
There’s a good chance you’re not taking enough time for yourself. Even if it’s just a 15-minute walk every day, you need the air – plus, turns out a 15-20 minute walk does wonders for your heart.
My situation was a bit different since my whole family was working together. But you can always ask your in-home caregiver to stay an extra few minutes while you walk or a trusted neighbor. Don’t skimp on yourself.
  1. Eat Right
I’m not the only one who didn’t eat right. It’s a crisis among caregivers! If you talk to fellow caregivers, you’ll find that – for a time – no one eats well. However, making healthy meals and continuing to cook helps you regulate your time and you’ll feel better – believe me!
  1. Be Vocal And Ask For Help
This is the perhaps the most crucial for new caregivers. You need to talk about it. And I mean really talk about it – not just complain at someone. If you ask for help, you’ll get it. And you need to ask because It doesn’t matter if it’s a caregiver support group or a senior care service, we all feel selfish and guilty when about asking for help. We feel doubly guilty when we ask for help taking care of our elders, because we all know that eventually it is going to be rewarding.
Yet, one of the worst parts was reading about how rewarding being a new caregiver is and feeling like I’m the only one shouting, “When is it going to be rewarding?!”
But I’ve since learned that the reward isn’t something you get immediately and oftentimes, you won’t even feel it while you’re the caregiver… but when my grandmother passed away, I knew I did everything I could for her. I spent quality time with her that I would never have had a chance to otherwise. And there were days where she gripped my hand or smiled that old, familiar grin that let me know she was going to be alright.


That was rewarding.

Setting Roles, Boundaries and Limits in Mothering a Complex Child

One day a few months ago, fellow disability Mom and writer Jennifer Johannesen sat down with me for a chat.  (I highly recommend Jennifer's book and her blog- they are at the top of my favourites list.)  In a previously published portion of our chat, I introduced Nicholas and our family life.

Here, I discuss the pain and joy in parenting a complex child as well as the perils of navigating the health care system to get the best treatment for our son.



00:05 – Distinguishes between parenting and the role of the therapist
01:41 – Discusses types of therapy and her right as a parent to make decisions
02:46 – Shares an example of how invested she was in therapy
04:27 – Identifies the moment when she realized what her role should be
05:22 – Cautions against allowing the parenting role to be overtaken by therapy
09:37 – Shares a story about poor communication of medical information despite her extensive experience
12:52 – Encourages parents and professionals to establish boundaries and role definitions
16:31 – Discusses ‘age-appropriateness’ for both the child and the parents
20:22 – Shares her son’s adjustment to moving away from the family home




The Stories We Tell Ourselves

The people of the Hopi First Nations understood the power of stories. They had a strong oral tradition and used storytelling as a mean to transfer wisdom from one generation to the next. Carefully embedded within each story was the values, skills and knowledge required to navigate the challenges of life successfully.

In my journey to create peace and joy in my life I too came to recognize the power of stories - both the stories I told myself and the stories I allowed to be told to me. I learned that by carefully managing these stories I could create the experience of peace and joy at will. The secret to living joyfully was to recognize my role as a storyteller and to take full responsibility for the stories I told myself.

The following is a true story about a young woman I worked with a couple of years ago. Denise's story demonstrates the power of story.

Denise came to see me shortly after her fiancé had been killed in a motor vehicle accident. The driver of the other vehicle was legally impaired at the time of the accident and found to be completely at fault. The death of her fiancé occurred just weeks prior to her wedding day.

Denise was understandably angry, resentful and sad. During the first 45 minutes of her time with me she expressed an intense out pouring of emotions. She talked with anger. She shared her sadness and grief. She was immersed in fear. And she even talked of revenge. Eventually Denise released the deep well of emotions that had built up inside of her and she moved into a moment of silence.

I interrupted the silence with a question. "Denise," I asked her, "If we could speak to your fiancé wherever he is and were to ask him what he would wish for you now, what do you think his answer would be?"

After a moment of reflection a smile came to Denise's face. "I know what Gary would wish for." she responded. "Gary would want me to be happy. He would want me to reclaim my joy and to get on with living it fully."

"I think you're right." I replied. "I suspect Gary would wish with all his heart that you not stay in anger or fear or resentment, but rather that you embraced peace and joy; that you continued to live the happiness that the two of you shared."

I then added a suggestion for her consideration. "Denise, I wonder if a way to honour your fiancé would be to wake each day and fill your heart with peace and joy and to live this way as a means of honouring Gary." I could see that Denise embraced my suggestion. Her face filled with joy as she grinned from ear to ear. "I'll do that she said." There was little more for me to say. I gave her a hug and off she went.

One month later Denise returned. "I'm doing really well." she declared. "Every day when I wake up I consciously hold Gary in my heart and I make a commitment to living the day peacefully and joyfully just as Gary would wish for me."

"My problem," she continued, "is that my parents and Gary's parents don't understand my joy. They think I must not have loved Gary. They think that the more you love someone, the more angry and sad you should be. I've asked them to come see you Ted, but they don't want to let go of their story that if you love someone you must be angry and sad."

I acknowledged Denise's challenge. I have seen it many times before. Many of us have been socialized to tell ourselves stories that undermine our ability to live in peace and joy. And so we live a life filled with anger, fear and resentment, not knowing that the solution is within us.

We are wise to acknowledge and consider the kind of stories we tell ourselves. Mastering our stories is the key to our happiness. The power of storytelling was so clearly understood by the Hopi that they declared - "He who tells the stories rules the world." You can rule your world, but only if you master the power of storytelling.

In peace,
Ted


My Best Caregiving Tip

After twenty-five years of intensive caregiving, the most important thing I've learned is that giving good care over time requires a team.  Trying to manage alone and without the help of others inevitably leads to exhaustion, depression, ill healt...

Making Friends With Solitude

I used to hate being alone.  I remember as a teenager, aching for the phone to ring, rifling through my closet for something 'cool' to wear, wandering the halls of my university residence listening for signs of music and laughter.  I was rest...

No Saints Around Here (Book Review): Do I Hate It or Do I Love It?

About 20 pages into Susan Allen Toth's caregiving memoir, "No Saints Around Here", I decided I didn't like the author.  Not one bit.  "How can a wife sigh loudly in front of her Parkinson's disease-suffering husband just because she can't have a second cup of tea in the morning?!" I fumed.  I kept picking up this book, reading a little, getting annoyed and then slamming it down.



This book really got under my skin.  So one day and about a third of the way through the book, I was helping my dear friend and caregiving mentor Kathleen Jordan pack her cupboards for a move into a smaller apartment.  Kath has spent her lifetime giving care to those she loves - she's the mother of three children, one with cerebral palsy complicated by mental illness, epilepsy and a visual impairment. Kathleen also looked after her mother until she died and more recently, her husband Bill.  Bill suffers from a myriad of serious ailments and is now palliative in a care home.

As I loaded jars and dishes into a box, I railed against "No Saints Around Here" and it's author.  Kathleen put her hand on my shoulder and said, "so you are comparing the way the author feels to what you felt looking after Nicholas, your child.  But Donna, it's so different caring for a spouse.  In a way, it's much harder, especially when you're older."  I looked at Kathleen, my teacher, and later went home to read again and consider my prejudices.

The thing is, at first I thought "No Saints Around Here" was shaping up to be a glib tale of care given, but with resentment and cynicism.  What I didn't understand was that I was reading the words of a woman/wife/companion who was livid at her loss and flailing with incompetence in the face of the Parkinson's that attacked her life and her love in some new horrible way every day.

No, this was a woman who loved her husband James - achingly, desperately, quietly, sadly loved him.  Nearly half-way through the book, the author describes visiting prospective nursing homes with her beloved.  It's almost too painful to read.  No nursing homes are anywhere near worth considering, so life goes on at home.   As James' condition worsens and crises loom on a near-daily basis, Toth writes about a friend's wisdom this way:


     "A devoted Zen disciple, Mimi told me, "My biggest test is when I'm cleaning a toilet.  I turn the task into a meditation.  I pay attention to my work, every gesture, every moment."
     I wish for a touch of Mimi in the morning.  Rather an savor the moment, I often feel as though time has alarmingly telescoped.  I have just finished clearing up after breakfast and now I need to get James into his pyjamas.  Where did the day go?  How did I disappear?  Why am I on this frozen tundra?"

One fascinating tell-tale sign of the journey of the caregiver's heartbreak is the shift in possessive pronouns when the author talks about her home helpers.  At first, she talks about 'our aide', but then I notice she uses "my aide" and finally, "James' aide." As James' disease progresses, Toth reveals her loneliness by becoming subsumed by her beloved's needs and losing the 'our' and 'my' in her language.  Only 'he' remains.

But the reader of "No Saints Around Here" will not have to read subtle signs of the caregiver's emotions - the author tells us everything.  This is a diary, after all.  Toth writes poignantly about the helplessness that every caregiver feels one day or another:

"I feel as though I am about to fall off my balance beam.  I picture every caregiver on one, usually performing with an outward calm, like a confident acrobat, but concealing an inner terror: "What in the world will I do now?"  For many of us, this must require both courage and faith, because I am often dizzy and close to gasping as I edge my way forward.  The balance beam hangs in an enveloping haze."

Yes, Susan Allen Toth, we all DO feel as you did.  In 2012, our family had recently moved from our home in the UK back to Ottawa, Canada.  This is what I wroteDuring the past few months, I described to a friend how I felt about the onslaught of change in my life - “it’s as if someone has removed all the floorboards from my house”, I said. “It’s like I am walking on just the narrow joists and I worry about falling”.

Susan Toth was lucky to have good friends who were kind and generous in sharing their own experience of nursing spouses through Parkinson's. Perhaps Toth's friend Dorothy summed up the truth about caregiving best: "You know, you do what has to be done.  And isn't that maybe the base line?  What it all comes down to?  You love someone, so you do what has to be done."

I changed my mind about this book.  I don't hate it, I love it.  Tonight at dinner, I told my husband that if he ever needed care, I would get out Susan Allen Toth's book as a reference because, I said smiling, "There are No Saints Around Here!"

Enabling Meaning and Purpose in the Lives of Our Loved Ones

How can we help our loved ones experience meaning and purpose in their lives?  Does having a disability, getting older, or losing cognitive skills automatically exclude the possibility of purpose in life?


In my family, meaningful contribution is central to happiness.  I believe it is for most people.   Our son Nicholas is 25 and mostly bed-ridden due to severe cerebral palsy.  He is non-speaking, but nevertheless communicates effectively with the combination of a few words, tongue clicks, hand gestures and in a pinch, a switch activated computer system (it’s slow and labor intensive).


Since Nick finished school, we’ve searched for how he might find a meaningful job.  He’s tried selling on E-Bay (he still does that from time to time) and he writes a sportsblog (which he enjoys).  But his recent foray into creating and managing sports betting pools is the magic bullet for meaning and purpose in Nick’s life, currently.  The sports addicted members of our family and best friends all participate in annual NHL (ice hockey) pools and currently, in a world cup soccer one as well.   Nick is the ‘commissioner’ and his role comes with weighty responsibilities.   Prior to the season or tournament, Nick convenes all the participants for ‘the player draft’ in his room.  Pizza and beer are served and participants who live out of town join in via Skype.  Lots of trash talking ensues as everyone picks their players and creates their own fantasy team.  Nick decides how points will be awarded and over the course of the season, he sorts out problems, answers questions and at season’s end, grudgingly awards the grand prize to the winner.   The betting pool is a source of purpose for Nicholas, but it has the added benefit of keeping friends and family socially engaged with Nick in a purposeful way.  The guys in the pool all want to win!


My Mom craves meaning and purpose in her life too.  A couple of weeks ago, she threw me a curve ball when she remarked, “I’ve got it in my craw that I want to get a job.”  This, from a feisty, but tired 92-year old who rarely has the energy to dress up in anything but a fancy nightgown most days.  My sister and I put on our thinking caps.  Knitting for premature babies perhaps?  Then, I happened to see an article online about a seniors’ home in Chicago that paired up with an English language school in Sao Paolo, Brazil to have weekly English conversation practice sessions via skype.  Watch the video – it’s so deeply heart-warming.  


This is meaning and purpose without leaving home or getting dressed up.  So, I showed the program to the manager of Mom’s home and I hope someone will run with it there.  But as a Plan B, I’m looking for a trusted person in my network, too, who seeks conversational English practice with a native speaker who has plenty of time and a good sense of humor. 



Meaning in someone’s life can be a highly individual affair.  People with severe Alzheimer’s or dementia can sometimes find profound purpose in singing to a doll.  The primal memories of nurturing children manifest themselves in cradling a doll or even a pet.  Once we get past judging these activities as being possibly unworthy (on a ‘normal’ scale) or even creepily unnatural, we can begin to glimpse how life affirming they are.  Put your assumptions about what constitutes a meaningful life aside for a few moments and watch this video. 



Meaning and purpose through contribution is absolutely central to everyone's happiness and wellbeing.  Our challenge as caregivers is to find a meaningful activity or interest in the life of our loved one, make it accessible and then share it and celebrate it.  Very often, it can mean the difference between happiness and despair. 

Coming to Terms with Disability in My Family, Across Generations

After my Dad passed away in 1975 following his third stroke, I was angry.  Really, really angry.  I would sit in church, look at Christ on the cross and fume, "why does everyone go on and on about YOUR suffering?!  That was NOTHING compared to what my Dad endured!"  All these years later, the anger has waned, but I still haven't come to terms with what happened back then.  My father was too young.  He was from a generation that abhorred dependency, so he suffered great humiliation.  I felt somehow abandoned by 'the rock' of our family, so I floundered personally.  The wounds are scarred over, but they're still there.


Nick's disability is different.  The first of my two gorgeous children, he was born with cerebral palsy in 1988.  In my book, The Four Walls of My Freedom, I wrote about receiving Nick's diagnosis this way:

The white haired doctor stooped to look closely at Nicholas and asked “Has anyone spoken to you about your son’s development?”  “No”, I answered, “He is small because he was a bit premature at 33 weeks.  Someone crashed into the back of my car at 26 weeks and they think that’s why he was born early”.  Only later I learned that “development” meant cerebral palsy or mental retardation.


Three months later, Nicholas was admitted to hospital so that tests could be performed.  The doctor asked me if I would like to hear the results.  I nodded. She closed the ward playroom door for privacy.  We were alone.  She in her lab coat was sitting in a sturdy mother’s wooden rocker.  I was squeezed into a plastic child’s chair.  Around us lay discarded toys and empty chunky bright tables and chairs, all toddler sized. Tears glistened on the doctor’s cheeks as she told me my baby was severely disabled.  “Never be normal” are the words I remember.  I also remember “generalized cerebral atrophy”.  Pea brain, I wondered?  “Oesophageal reflux”, she said, “Nothing to keep food down where it belongs.  Common in cerebral palsy.  Pain similar to heart attack”.   There were blue stripes on her blouse.  I looked down and something red caught my eye.  Blood was oozing from the edge of my thumbnail where I had bitten it. “Well, I’m in the right place”, I thought.

I stood up and felt a lightness, a sense of relief and purpose.  “Now I will be able to feed my child”, I thought. “I will become an expert; I will apply myself to becoming a great mother, and my baby will grow into someone perfectly perfect.”  Passing the desk, I noticed the nurses half turned, whispering, their pitying eyes fixed on us.  I scooped up Nicholas, deposited him into a pram and paraded up and down the hospital halls, back straight, eyes fixed straight ahead. But I was not alright.  I wrote in our baby book: “February 22-25, 1989 Nick admitted to hospital.  Cat scan, PH probe and digestive barium xrays  All abnormal – we trying (sic) to absorb this terrible news.”


I remember hearing a radio news report a long time ago about a terrible road accident in rural England.  A young family – parents and three children - had all perished.  The grandfather’s public response was “I don’t understand – we brought them up so carefully so nothing like this would ever happen”.  I felt like this grandfather - the experience of falling victim to random tragedy and a serious derailment of one’s life plans caused such profound shock and questioning of all I believed was solid and true.

Now Nick is 25 and living a rich, busy and engaged life with full-time care in a home away from ours. To me, his disability is as normal for him as being able-bodied is to me.  That said, his disability did derail all my life plans.  But, you know what?  I'm OK with it - I'm happy with the way my life has turned out.  Perhaps I wouldn't be writing those words if Nick was ill or in pain, but he's not.  Just a disability by itself can't hurt us.
My Mom doesn't have a disability per se, but she is getting wobbly on her feet, she's getting very, very tired and she has trouble mustering up the energy to do things for herself.  When I think of my mother, I think "well, it's natural... all this getting old and needing help.  It's part of nature."  
Dad's disability didn't feel right or natural and neither did Nick's at certain points of his life.  But in my mind, their disabilities are beginning to melt into my Mom's 'natural way' of needing help as she ages into infirmity.  Maybe the cooling embers of my youthful fire of 'unfairness' are due to my own aging.  I'm 59 years old and this morning, I noticed my back is a little sore and my knees quite stiff.  I shrug and pour myself a coffee. 
This blog post was the second in this Summer Blog Challenge - the results will be turned into an e-book.  

An Interview With Me About Caregiving and Writing About Family Life & Ideas


Recently, I gave an interview to Kris Bone, a writer with the Puritan Magazine (a Canadian literary journal).  Here's his article about my book, "The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving" (House of Anansi Press, 2014).  My book is available everywhere in Canada and for pre-order in the USA via all major booksellers. 



JUNE 23, 2014

An Interview with Donna Thomson, Author of The Four Walls of My Freedom


Donna Thomson on Being a Caregiver of Disabled Individuals // Kris Bone


donna thomson
Donna Thomson and her book, The Four Walls of My Freedom (House of Anansi)

When it comes to Canadians with severe disabilities and the people who care for them, a suspicious opacity surrounds them in the public consciousness. Fundamental misconceptions about the nature and benefits of the relationships between people with disabilities and their friends, families, and caregivers—as well as underestimations of the immense cost and work that go into providing adequate care—act as impediments to positive change. That is exactly why a book like Donna Thomson’s The Four Walls of My Freedom (House of Anansi) is such an important one: it gives readers access to all facets of the life of a caregiver, even the ones we’d rather not think about. It also reminds us that in omitting to think about these issues, whether intentionally or not, we are doing some of the most vulnerable people in Canada a dangerous disservice.
To approach the importance of Thomson’s book in a slightly different way: there is one incident relayed in the text that has stuck with me since reading it months ago.
During a panel discussion at Stony Brook University in 2008, philosopher Eva Kittay was posed a question that, in her own words, induced in her “a feeling of nausea.” As a staunch defender of rights for those with disabilities and as the mother of a woman with severe cognitive disabilities, Kittay was asked to speak to the “morally significant” ways in which the profoundly disabled are “superior to pigs or dogs or animals of that sort.” Kittay proceeded to give her audience a glimpse into the complex relationship between her and her daughter, and the relationship between any disabled person and their friends and family: “There’s so much to being human. There’s the touch, there’s the feel, there’s the hug, there’s the smile … there are so many ways of interacting. I don’t think you need philosophy for this. You need a very good writer.”

kittay_laudatio Donna Thomson
Eva Kittay, staunch defender of rights of persons with disabilities

Kittay’s answer speaks to the need for accurate and available representations of the lives of people with disabilities and their caregivers if any sort of understanding is to be achieved. Thankfully, this is exactly what Thomson’s The Four Walls of My Freedom provides.
In 1988, Thomson’s son Nicholas was born with cerebral palsy. The Four Walls of My Freedom grew out of the ensuing struggle that Thomson and her family endured in trying to provide both a full, dignified life, and adequate care for Nicholas. If The Four Walls of My Freedom was only a predictable book about one family’s difficulties, though, with a Hollywood-friendly happy ending, it wouldn’t nearly be so powerful a narrative. The real strength in Thomson’s text comes from two sources: the first is her frankness. Thomson does not hesitate to call attention to her own faults, insecurities, and mistakes. Navigating Nicholas’ needs is a job more than any one person, mother or not, could be expected to handle, and Thomson does an admirable job of framing the magnitude of what she, and all those in her position, are up against. It is not the story of a super-mom and her amazing single-handed victory over the opposition; it is a story of small victories and a lifetime of learning how to meet the needs of her son, and of all Canadians with disabilities.
The second strength is that the content of the book does not limit itself to just the story of Thomson, her son, and their experiences. Thomson dips into various other theories and approaches to caregiving throughout, while also drawing parallels to issues like eldercare*. The book’s subtitle, “Lessons I’ve Learned from a Life of Caregiving,” is almost deceptively narrow when alluding to the content of the book—more than just lessons learned while providing care, the text contains lessons from a life spent researching and considering caregiving, much to the benefit of the reader. Drawing on material from thinkers like Nobel Prize-winner Amartya Sen (whose “capability approach” plays a major part in Thomson’s personal philosophies) or the aforementioned Eva Kittay, the book is complex and multi-faceted, and uses an effective blend of the personal and the theoretical to bring the uninitiated reader up to speed on caregiving.
The Four Walls of My Freedom is a hopeful book, but it is a book that tempers a hopeful outlook on Canadian attitudes on disabilities by underscoring it with the absolute necessity of greater awareness. Thomson makes it clear that Nicholas is not someone to be pitied—but he does have needs that need to be met if he is to participate as an equal citizen. Thomson makes an important distinction, a la Amartya Sen, between equality and equity, between a medical model of disability and a formulation where personal freedom and happiness is the goal. If nothing else, this book performs one of the most important functions of any writing: it helps us to understand the lives we don’t lead.
As part of a group of editors and writers who often put a lot of thought into what it means to encourage diversity and equality in the work we write, read, and publish, I thought it would be an enlightening experience to ask Donna Thomson a few questions about the writing of her book, and about her life as a caregiver. The following interview was conducted via email during the Spring of 2014.
Kris Bone: Donna, much of your book, The Four Walls of My Freedom, deals with the struggles that you and your family underwent both to acquire suitable care for your son, Nicholas, and to find a measure of balance in your lives while managing your dual roles as loved ones and caregivers. The material feels particularly intimate, and you certainly don’t shy away from the tougher realities of having a child with disabilities—a seemingly endless schedule of surgeries and medical emergencies, a never-ending search to find the best care for your child (be that medically or academically), and the infinite number of adjustments and accommodations that your family has fought to make in order to ensure that Nicholas can experience the world as an equal citizen.
In some previous interviews, you mentioned that even discussing your experiences with neighbours or friends was all but impossible because they simply could not relate to the things you were going through, and that the experience became very isolating. Was writing this book, then, a liberating experience, or was it more difficult to find the words? 
And now that you’ve given talks about your experiences, how has the response to the book been? In the talk you gave at the MaRS center here in Toronto in March, there were many people in the audience who seemed to express a similar sense of isolation and frustration surrounding the way our society treats caregiving and disability. Have people been supportive of your narrative, either within the disability community or outside of it? Have there been negative reactions to your book?
Donna Thomson: It’s true that caring for Nicholas (who was in nearly constant crisis) as well as for my daughter was isolating for me. My life was very different from other peoples’, and when someone continues to be ill or in pain over time, friends and family feel helpless. By the time Nick was a teenager, I felt that I had nothing interesting or pleasant to say to anyone. Nick’s health had stabilized somewhat when I began to research the book. At that point, I was searching for meaning—the meaning of my life experience, that of Nicholas, my husband Jim, and our daughter Natalie. I thought perhaps I had found an idea (Amartya Sen’s “Capability Approach”) that might give our lives meaning and might define us as equal members of society, rather than outsiders. For me, the philosophical ideas of what constitutes moral personhood and a ‘good life’ were really, really compelling. The ideas I was exploring helped me understand a new way of seeing dependency and how our society can be organized to support us. That was not liberating so much as thrilling. It was like finding a treasure. I didn’t want to simply tell our story—I wanted to use snippets of our story to talk about dependency and care from birth to death, across abilities. I wrote about the ideas first, and then reviewed my memories to find family anecdotes that would illustrate my points. Often, I wrote in the middle of the night—that’s my creative time.
You asked how families have responded to my book. I have had many letters and messages from parents. I am always so grateful when readers take the time to share their experience of my book and tell me what it means to them. Most readers tell me that they found my book mirrored their own experience of relentless caregiving, sleepless nights, and loneliness as well as the intimacy and joy that dependency work inevitably brings. Some parents worry that they cannot feel the hope that I express, especially if their son or daughter has a degenerative condition.
My conversations with families south of the border reveal a cultural difference in values about care. Many U.S. parents feel that ‘families should look after their own’—they are mystified by my assertion that the government should have a role in supporting citizens with care needs. And yet, they too are overwhelmed, so we have many day-to-day experiences to share. Some family members who write to me are caring for elderly parents suffering from Alzheimer’s or other forms of dementia. Like me, they are trying to come to grips with the complicated ethics of asking for and receiving help. They seek conversation with someone who has shared something of their experience. There have been one or two negative reactions to the book (there may be many more, but those readers haven’t told me)! I have heard from some parents that my book was too ‘political’—that it wasn’t simply the story of struggle and redemption in disability parenting they hoped for. On one occasion (this was at the event you attended), a parent worried that my story was not inclusive of the experience of families living with poverty or the challenges of being from a visible minority. My book does not resonate with everyone!
KB: In the very first chapter of the book, you mention that when Nicholas’ test results were first returned and you were informed that your son was severely disabled, you felt “a lightness, a sense of relief and purpose,” because you felt that at least you could increase your own knowledge of the conditions Nicholas was living with—and thereby help him “grow into somebody perfectly perfect.”
In those first months, what sort of material did you find that dealt with family life and disability? Outside of functional medical information, which resources did you draw from? Did you find that there were sources that prepared you for the reality of life with a child with disabilities, or were narratives like that harder to come by—and are there any things you wish you could have known then that were not available to you?
Donna Thomson: In the early days, I remember finding two great resources that helped me move from a state of despair and paralysis to positive action: the first was information about a therapy called Conductive Education. It wasn’t the therapy per se that was so heartening; it was the feeling that there was something I could teach Nicholas that could help him overcome the effects of his disability. The other resource was a book by Helen Featherstone called A Difference in the Family. Featherstone wrote a sensitive and intelligent family memoir—it gave me some insight into the desperate love I felt for Nicholas and how our life together could be simultaneously rich, joyful, fearful, and sad. These resources, along with the friendship of other parents, began to offer me the beginnings of a roadmap about how to live a life very different from the one I had always imagined.

Donna Thomson with-son-Nicolas-April-2012
Donna Thomson with her son, Nicolas

Are there things I wish had been available to me: I would say that the Internet is something I wish I had had in the early days. I sought information and connections to other parents who were going through something similar to our family. As Nicholas began to exhibit symptoms that mystified doctors, I struggled to research similar cases. I borrowed articles from medical journals from other parents—a sort of underground press (samizdat of medical literature). It’s so much easier now, with my laptop.
KB: Building on your answer to my first question a little bit, in Chapter Six of your book, you quote the following from American Philosopher Eva Kittay from a 2008 conference at Stony Brook University: “there is so much to being human. There’s the touch, there’s the feel, there’s the hug, there’s the smile … there are so many ways of interacting. I don’t think you need philosophy for this. You need a very good writer.”
The quotation from Kittay refers to the experience of parenting a child with a severe disability, and to the difficult to capture uniqueness and beauty of that relationship. In your own book, you do a great job of fleshing out that same dynamic, and showing us what the dual parent/caregiver role can be. My question is: How well, in your experience, do we represent that caregiver/parent role in the media (print, television, film, etc.)? Have any representations of caregiving and disability that you’ve seen been accurate to your experience? 
In your book, you make clear that we simply do not, societally, take caregiving (and support thereof) seriously enough—would better/more representation of these roles in popular media help us take the issue more seriously?
Donna Thomson: I do think that we need a more compelling and more accurate narrative in the media. Dr. Pamela Cushing, a professor of cultural anthropology and disability at the University of Western Ontario, is someone I spoke with recently about the void of caregiving stories in our society. I wonder if we need a very creative advertising agency to design a campaign! Certainly, there are many narratives out there that misrepresent us and our loved ones—stories that depict us as ‘saints’ and our children with disabilities as ‘heroes,’ for example. These representations just aren’t true, and they serve to perpetuate a rarefied view of our families that is ultimately exclusionary. The way that people give and receive care in their families is as individual as the colour of their eyes. There have been sensitive portrayals of family caregiving in film, although my sense is that the best ones are not products of North America. Generally, I don’t think the subject of dependency is prime-time material in our country. That said, Sarah Polley’s film Away from Her struck me as a nuanced and truthful portrayal of the effects of dementia on a married couple, so of course there are exceptions.
KB: One point made at your talk that really stuck with me was that as the population of our country ages, elder care is soon to be a much bigger issue than many people are ready to admit or think about. Are there other essential truths about care and caregiving that you wish more people knew? Are there some common misconceptions you’ve faced that you wish were easier to clear up?
Donna Thomson: I wish people knew that much of what makes most of us happy can be found in dependency relationships. Looking after people we love and receiving care are occupations rich in opportunity for intimacy, laughter, sweetness, and relaxation. That said, caring and being cared for is often a struggle.
David Brooks, in a recent OpEd piece in the NY Times wrote,
“People shoot for happiness, but feel formed through suffering. Recovering from suffering is not like recovering from a disease. Many people don’t come out healed; they come out different. They crash through the logic of individual utility and behave paradoxically. Instead of recoiling from the sorts of loving commitments that almost always involve suffering, they throw themselves more deeply into them. Even while experiencing the worst and most lacerating consequences, some people double down on vulnerability. They hurl themselves deeper and gratefully into their art, loved ones and commitments.”
Most people seek meaning in their lives. They seek intimacy. They want to be known and loved. All these aspects of life satisfaction are byproducts of caring and receiving care.

*As one of the attendees at the official launch pointed out, eldercare will eventually have a bearing on everyone. Even if a layperson does not understand why it is important to provide care for people with disabilities, few people will ever deny that providing care for their aging parents is a priority for them. As the attendee in question so aptly phrased it: “If someone tries to tell me that they don’t like their taxes going to caregiving, I ask them which health service they would cut from their mother’s care first. That shuts them up pretty quick.”  
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