When I was a teenager, I longed for something exciting to happen. Walking home from school, I prayed for tragedy, drama and romance. “Be careful what you wish for”, my Mom said.
Donna and baby Nick
In 1973, I was 18 and my Dad had the first of three paralyzing strokes that would claim his life two years later. Helping around the house when Dad was sick turned out to be my first taste of family caregiving. I suppose in some ways, that searing experience helped to prepare me for the birth of our son, Nicholas. Nick arrived in 1988 with severe cerebral palsy and a myriad of medical challenges. “Who knows what makes the little turkeys cry?” mused our doctor when I complained our baby had screamed for 37 hours in a row. A few months later, we learned that ‘neurological irritability’ was a symptom of brain injury in newborns.
Nicholas is almost 26 years old now. He has survived horrendous surgeries, chronic pain, and even a palliative diagnosis. Against all odds, he’s still kicking… and smiling.
My life of running a home hospital for Nick while raising our daughter and maintaining the facade of being happy, rested and ‘normal’ wasn’t easy and certainly, I almost never succeeded. Gradually, I began to feel that my place in the world was to be transparent… it was to focus a beam of light on others as I shifted into the shadows. I quieted my restless spirit and found some degree of peace in reconciling my few life choices. I looked around my home and found things to be happy about – my children’s laughter, the blooms in my garden, melting butter in mashed potatoes or folding warm towels. All these ordinary gifts filled the empty space in my heart.
Who cares about the invisible lives of caregivers? No one, I thought. Until one day when I began to imagine that perhaps our story of extreme caregiving at home could have lessons for everyone, including those caring for elderly parents. In the course of an interesting conversation with a friend, I learned about the work of the Nobel Prize winning economist, Amartya Sen. Sen writes about extreme poverty in India and the central question he seeks to answer is, ‘how can people have a life that they value, even within very challenging life circumstances?’ Suddenly, I thought, “If I think about our family life in this way, perhaps our home experience has some important lessons for other caregivers, for governments, for church leaders and for all who seek to create a more supportive world for everyone who gives or receives care!” I began to research Sen’s work and to have a long, hard think about what programs, services and available tools had helped our family to have a life that we valued. Many weren’t helpful at all. Exposing how our society undervalues caregiving and reviles dependency became my passionate objective. That, and exploring ways that families like mine could have a good life, even while running a home hospital and giving twenty-four care.
The Four Walls of My Freedom: Lessons I’ve Learned from a Life of Caregiving (The House of Anansi Press) is the result of blending a narrative of the triumphs and traumas in our family with reflections on what constitutes a good life for caregivers and those we love. My book is already available in Canada, but I’m very happy to announce that this new and expanded paperback edition is available now in the USA as well. I hope it sparks thoughtful conversation at dinner tables and in boardrooms about the value of giving and receiving care in our society.
“This book should be read by all who seek to understand what it means to be human” – Jean Vanier, founder of L’Arche
Donna Thomson, author of The Four Walls of My Freedom and blogger for The Caregivers’ Living Room
A stooped and white haired doctor touched my shoulder and gently asked “Has anyone spoken to you about your son’s development?”
In that moment, in a hospital emergency room long ago, I turned from being a new mother into a lifelong caregiver. My baby was only three months old and was seriously dehydrated. I assumed that Nicholas’ myriad of symptoms including endless crying and an inability to properly suck and swallow were due to his premature birth. That day, I remember hoping the word ‘development’ meant my baby’s length and weight. At the time, I couldn’t bear to grasp the true meaning of the doctor’s question: whether anyone had told us that our son had cerebral palsy and possibly a cognitive disability as well.
Throughout the years of our son’s life, the identity of caregiver has pulled and pushed me like tides ebbing and flowing.
Although I denied knowing what ‘development’ meant to the ER doctor, I did know. I just didn’t want to admit it to him, or to myself. But later at home, a sense of dread infused my days and nights. So a month later, when another doctor confirmed Nick’s diagnosis of severe cerebral palsy, I felt relieved.
Naming our shared enemy put my baby and me on the same team. Now, I was a caregiver on the warpath. Nicholas was my first child and I had the natural optimism of a fairly well educated girl who always worked hard to be on the honor roll.
In those early days, I believed that the power of my love, my reason and my will could cure my son.
Nicholas at the time of his diagnosis
Nicholas was quickly assessed at our local children’s treatment center and we began a rigorous regime of physical, occupational and speech therapies. I discovered ‘Conductive Education’ and we added that to our program too. We had a visiting infant stimulation expert at home and swimming and music lessons for babies with disabilities at a local community center. After a couple of years, I collapsed. One day, I was describing our daily routine to a friend. I suddenly asked myself, “What am I doing? Nicholas is a child and I am his mother! He is not my project, he’s my baby!” Tears welled in my eyes and I turned away from my friend, hugging Nick tighter. I vowed to change our family life and our therapy goals. To do that, I would need to be more of a mother and less of a caregiver.
Nicholas in Conductive Education
My roles as caregiver and mother became less at odds and more integrated as I advocated for Nick’s needs over the years. I learned to put those different hats on when required, and sometimes, both hats at the same time. When I advocated to local authorities for help at home, I used my expertise in caregiving as a counter-balance to a declaration of love for my son. Presenting in too clinical or too emotional a manner wouldn’t have yielded the results we needed and it wouldn’t have reflected the truth about our lives.
Nicholas is 25 years old now.
Although he’s largely bed-ridden due to chronic pain, he is a blogger, sports journalist, and self-described ‘sports media analyst’. Nick lives in a care home near us and we visit him often. Skype technology has allowed my husband and I to take month long holidays without too much homesickness on anyone’s part.
I never abandoned my role as Nick’s caregiver and I never will. I just put it in perspective. Although Nick never overcame the effects of his disability, I am always his Mom first and he will always be my treasure.
Growing older always involves some kind of loss. For my Mom, it meant giving up her beloved car. To Mom, a car has always represented freedom and independence. She fancies herself as a kind of Canadian Thelma or Louise – ‘I’ve had it up to my ass in sedate!’ would be her motto (that’s a line from the movie). I know that for her, looking out the window at an empty parking spot below makes her feel sad and powerless.
I still drive. I have my health. My particular sense of loss comes from letting go of my role as our son’s primary caregiver. My entire adult life was spent looking after our children, especially Nicholas’ high needs. I was his caregiver, but I was also ‘CEO of the Nicholas Wright Corporation’ – I was expert in advocating for him, managing his daily care, coordinating school affairs as well as therapies and home helpers. Caregiving was my identity.
Now, Nick lives in a care home with a fabulous group of young and strong professional carers who are also friends. I no longer have the strength to re-position Nick in his wheelchair. I can’t recite his complicated medication regime anymore. My confidence in giving our son the care he requires to live and thrive is shaken – I can’t do it anymore.
So, what is my new role? I’m not sure. One thing I do know: since Nicholas moved out of our home in the summer of 2011, I imagined that I could still look after Nick – I just didn’t have to at the present. But until recently, I thought that if anything at his home went awry, I could bring our young man back home with us and things would go back to the way they were, with me at the helm. Now, I know that’s not true. I’m just too old for the job and that frightens me.
I’ll get used to these new thoughts in my head, I know I will. And a good part of feeling comfortable with my own frailty is trusting those who are looking after Nick now. I need to remind myself that I do trust everyone on his care team and I need to tell myself it’s OK to take a back seat. Because magical thinking and caregiving aren’t great companions. But amid the harsh realities of aging and shed identities, there has to be laughter and sometimes, the opposite of sedate. For that, I take my lead from Nick.
Yesterday, I read an excellent blog post titled “Asking for Help” on the Caregiver Space. The article is chock full of good ideas and practical advice. It was the comments that got me thinking, though. Many sounded like this:
What if no one asks if they can help? That’s my problem….. I’m here 24/7, if someone would ask if they could come stay here for a little while for me to get out, I might take them up on it, but nobody offers that….. It’s hard…..it’s been 3 years….. A lot of people say….call me if you need anything….. But that’s not the same as a real offer….
Others on the Facebook posting of the blog said they did ask for help, but the response from siblings was ‘I think I’m busy’.
So, what’s going on with caregivers who aren’t getting the help they need from family and friends?
Fear of asking for help
There’s a cop in the head of many caregivers and that cop repeats things like, ‘you should be able to do this alone. What’s the big deal with doing laundry or shopping or banking for Mom?’ Many caregivers believe that they are shirking their obligations and actually betraying the love they feel for a dependent loved one if they ask for help. It feels like an admission of failure in the most important job of your life.
Caregiving websites are littered with blog posts, resources and inspirational sayings about self-care. We’ve all heard that we must care for ourselves in order to care effectively for our loved ones. So, why is it so hard to ask for help? And why do people say no when finally the request is made?
One answer could be that by the time a request is made, the caregiver is so exhausted and angry that the request sounds angry. And a caregiver who is overwhelmed is not going to be asking for something small, the request is likely to be for someone to come and ‘take over’ for a few days. That’s not unreasonable when one sibling (or parent) is doing the lion’s share of care. But there may be a good reason that even someone who wants to help will say no in this situation.
Fear of the unknown
Caregivers who aren’t used to asking for help often don’t share the details of their caring lives with family and friends. Not sharing stories and information is part of the ‘Oh, I can do it myself, it’s all fine” modus operandi of the caregiver who is locked in the time bomb of ‘look after your own’ mentality. Family and friends who are asked to help someone in an emergency whose needs they know nothing about will be afraid to help, especially if the request sounds angry or desperate.
How to get the help you need
Change the words of the cop in the head – say instead, “I need my family and friends to be on my team. I need to help train them. And that training will take time and encouragement.”
Begin training on a good day, when everything feels under control. Think of what members of your family naturally like to do or talents they might have. The agenda is to familiarise your future team members on the needs of your loved one. Remember, every caring task by itself is perfectly doable. But taken together and over time, caregivers become overwhelmed trying to do everything alone. Pick one task you think a friend or relative might be able to do. Ask that person to do that task once a week for a month with a promise to re-evaluate on both sides after the trial period. Some caregivers might not have the words to make that first request. Try saying, “I know you love cooking and we always love all the treats you prepare. I don’t have time to cook a healthy meal every night, so I wondered if you would like to make us a meal once a week for a trial period of month or so? You could pick a day of the week that works for you and we can check in after a month to see if that day works for us all. What do you think?”
The reality is that most people want to help, but they don’t know how. And they see the danger of becoming overwhelmed. That’s why it’s important to choose small tasks that people can absorb into their lives and feel good about helping in a way that exploits their talents without feeling out of control. Once family and friends have some experience in helping that feels good, they will be much more likely to help out in an emergency. They’ll be your teammates in caregiving.
If you want something you have never had, you must be willing to do something you have never done
Fact: Caregivers need help.
Fact: Many caregivers have trouble asking for help.
Fact: When friends and family say, “Let me know if there’s anything I can do”, caregivers stifle the urge to scream.
There are so many things wrong with this ‘offer of help’. First, it’s a lazy response to a real need – it’s an easy ‘out’. A person who truly wants to be helpful should try to imagine your situation and offer some possible actions that will lighten your load; actions that a friend will actually carry out within days. Secondly this ‘offer of help’ puts the onus of asking on the caregiver which feels like a veiled way of discouraging a caregiver from actually putting in a request.
As a caregiver community, we need to have a ready response to this ubiquitous saying.
An Experiment: Think of three things that someone could do that would be really helpful. These might include walking the dog, delivering a prepared meal or staying with your loved one for a couple of hours once a week.
The next time anyone says, “Let me know if there’s anything I can do”, have your answer ready. Say, “thank you for asking, yes! Would you…?” and just pick one task from your list of three. At first, tasks should be one-time, simple jobs that are easy to complete. Once people get in the habit of helping and they know your daily reality a little better, they might expand the range of their helpful actions. Remember to put a time frame on your request – pin down a commitment. Offering heartfelt gratitude when someone does follow through is a good way to keep them coming back. Everyone likes to know that their helpful act has made a positive difference.
This video got me thinking about how I have lied to my loved ones. I lied to Nicholas when I said it would be alright after his hip surgery (the truth is, I had no idea… and in the end, it wasn’t alright). I lied to Nick and to my Mom when I said “honestly, it’s no trouble at all!” (and I will continue telling this lie until I can no longer be of help). I lied often when I said “I’m fine!”
But I tell the truth, too. If a procedure is going to hurt, I always tell Nick. If I’m worried, I tell my loved ones. And if I think we should go to the hospital or call the doctor, I tell them – I tell my family the plans I believe we should make for their care.
Let me tell you about a perfect caregiver I know. Her name is Glenna and she looks after my Mom for a couple of hours on Wednesdays and Saturdays. Mom’s home care agencies are littered with support workers she’s thrown out – my mother resents needing help and quite often, she takes it out on her unsuspecting caregivers, especially if they are patronising. But Glenna is different. She’s quiet, but smart. Sensitive, but direct. Respectful, but not fawning. When Glenna is home, you wouldn’t know it, except that the laundry is done, the kitchen is tidy, there is a sandwich and fruit plate prepared in the fridge and Mom is dressed with her hair styled.
Eva Kittay, the philosopher and disability Mom, describes the perfect caregiver as a ‘transparent self’:
A transparent self does not allow its own needs or vision of the good to cloud its perception of another’s needs, and so offers no resistance to its response to another (except, of course, when such a response would be in direct violation of a well considered and deeply held moral belief or conception of the good). The perception of and response to another’s needs are neither blocked by nor refracted through our own needs and desires. A transparent self attempts to intuit and respond to the other’s own sense or understanding of their own good, and does so for the other’s own sake. (2007, 53)
Glenna is transparent when she gives care. For example, a couple of days ago, I visited Mom and when I arrived, Glenna was there along with my sister Karen. We all converged on Mom because we knew that she didn’t feel well and might have pneumonia. I watched as Glenna knelt at Mom’s chair-side and asked quietly, ‘would you like a dressing gown? It’s a bit chilly in here.” She didn’t ask about putting a glass of ice water on the table, she just did it. Glenna would never, ever ‘show off’ her caregiving skills or her friendship with Mom to us, the daughters. She knelt beside Mom to establish eye contact and be heard without disturbing conversation in the room (Mom is slightly hard of hearing). Glenna never draws attention to Mom’s frailty or needs – her assistance makes Mom seem more able and less dependent than she is.
Glenna is a perfect caregiver and we are very, very grateful to have her in Mom’s life. But as I say in my book, The Four Walls of My Freedom, “The extent to which a carer has to become ‘transparent’ in order to provide good care, acutely listening and watching for signs of need or distress, cannot and should not be sustained without reward and rest.” Transparent caregivers are perfect caregivers, but they are fragile. We all need to support the integrity, strength and health of the perfect caregivers in our lives – our own future wellbeing as care receivers depends on it.