Image of a red glass heart
Bloom Blog

Some parents bristle at the word 'caregiver.' New book explores how to grow with the role

By Louise Kinross

The Unexpected Journey of Caring is a new book for anyone who cares for a child or adult with disabilities or serious illness. It explores how to move from the confusion, isolation and grief of early days, to acceptance, new ways of seeing things, building support, and how to use practical tools to integrate caregiving into a full life. The Unexpected Journey of Caring is written by Donna Thomson, author of The Four Walls of My Freedom, about raising her son Nicholas, who has 24-7 care needs, and Dr. Zachary White, an associate professor in health communications at Queens University of Charlotte, North Carolina.

BLOOM: Why was there a need for your book?

Donna Thomson: In all of the thinking I’ve done about caregiving, and the personal experiences I’ve had—the good, the bad and the ugly—I kept churning over if there was one line of reasoning, and steps you would need to take, in order to survive this experience, and come out as a whole person at the end. I wanted to know what is the caregiving code, and how can we crack it.

Since I wrote The Four Walls Of My Freedom, I had a very intensive caregiving experience with my mother, who died on August 16, 2018. It got me thinking about how we need to begin to think about caring in a way that is not private, exclusively, but as a social problem and concern of all of society. It affects everyone at some stage in their life. How can we begin to talk about it outside of the silo of disability, or the silo of childhood disability, or the silo of aging and Alzheimer’s?

In the context of Ontario right now, we’re seeing how autism is pitted against other developmental disabilities.

The political agenda of this book was to think of care, in all its forms, across the lifespan. I’m happy to discuss childhood disability and Alzheimer’s in the same sentence, because I think the effects on the family are quite similar. And I think we have the potential to form a social movement for care in Canada, and North America, and worldwide.

My co-author, Dr. Zachary White, was a caregiver to his mother, who had a diagnosis of terminal brain cancer, and his posts in the blog The Unprepared Caregiver resonated deeply with me.

We felt our work meshed, and we decided we were going to test the theory that if someone had the language to describe their caring experience, they could create a life narrative that includes caregiving, rather than thinking of it as something separate from their life. Then, if you’re able to incorporate caring as part of your life story, as where you need to be—and not wishing to be somewhere else, or waiting for it to be over all the time—you can begin to look for partners and resources in your community, with a different starting point, and a more positive outlook.

BLOOM: Your introduction is called “I’m (Not) A Caregiver” and I got stuck on that, because it’s a conflict I have within me. Can you explain some of the reasons people resist being called a caregiver?

Donna Thomson: I think the word caregiver mixes up these notions of burden and professionalism and positions those ideas in opposition to love. There’s a story in the book about a daughter who says she’s not her mother’s caregiver, because she wants to preserve her mother-daughter relationship, and the word is seen as a threat to that. In our culture, there is no dignity in dependency.

Some parents of children with disabilities refuse to call themselves caregivers, or don’t see it as a good descriptor. They might say I’m a ‘medical mom’ or a ‘complex care mom’ or a ‘disability mom.’ Or they might just say 'I’m a mom, and I will talk about my child’s needs separately.'

It’s a loaded term. Many disability parents see the word as solely having been appropriated by elder care.

The reality is that in today's world, you need to call yourself a caregiver to get help. If we think about what we actually do to look after our children, we can think about what kind of support do I need to be just a mom to my child.

BLOOM: Wow, I don’t think many parents think of getting that degree of support—that would allow them to just focus on being a mom—as being in the cards. 

Donna Thomson: I think the way supports and services, and even families, are set up, we don’t have the language to have that conversation, even with ourselves internally.

Another way this is looked at is as a rights issue: The right to be a mother. You declare that you need this kind of help to protect your mother-child relationship. Certainly, the word caregiver acts as a gatekeeper to accessing help. How do parents feel saying ‘I am my child’s caregiver?’ 

BLOOM: I think often parents don’t want others to perceive that their relationship with their child is different, so they don’t like the word caregiver.

Donna Thomson: As disability parents we try to normalize our relationship with our children, and how we present our child to the world. We don’t usually want to present our child as primarily having extraordinary needs. What’s at the root of a lot of these issues is the way that we are afraid of, and abhor, dependency. To be dependent in our world is not okay.

BLOOM: And we don’t want people judging our kid as not okay.

Donna Thomson: Yes, we try to keep that private, we sweep it under the rug. We are worried about exposing the vulnerability of our children to the world, and part of that exposure is declaring our own caregiving role. 'Yeah, I’m his mother but I’m his caregiver.' Even saying that out loud, now, gives me the creeps.

BLOOM: You talk about how often caregivers feel alienated from friends and family they thought they could rely on. Can you elaborate?

Donna Thomson:
Particularly when a child is diagnosed with a disability, or when a child has a serious event or illness or regression, people who are close to us feel very uncomfortable, so they try to influence the relationship with you, the parent, to be something that makes them feel comfortable. It often has nothing to do with the way you’re feeling, or the actual reality of what your child is going through.

This is in the chapter that talks about the masks we’re forced to wear. Think about when someone says ‘I don’t know how you do it,’ and ‘You’re so brave.’ Or ‘You’ve really got this, you can do it.’ We find ourselves nodding, because if we nod, that makes the other person feel better. It makes them feel that they somehow have got you—your life and your feelings—in a box that has nothing to do with the complex reality of the situation.

BLOOM: And if, instead of nodding, we break down, they couldn’t cope.

Donna Thomson: That’s why an awful lot of us are comforted in our online and face-to-face parent groups where we can break down and everyone goes ‘Yeah, yeah.’ Then you stop crying, and you crack a dark joke, and everyone gets it. There is this freedom to experience complexity, and not feel like you’re betraying your child.

BLOOM: One chapter title includes ‘Why am I so hard on myself?’ What is it about parenting a child with disabilities that makes us self-critical.

Donna Thomson: I think parenting is a trap for self-criticism period. Social media, though it can be a wonderful connector for our families, can also be very harmful in the way it presents that Facebook moment of perfection. It’s natural that we’re always examining the choices and actions we take, and comparing them to the myriad roads we didn’t take, and questioning whether one road could have been better. ‘If I hadn’t gone on that weekend break alone with my husband, maybe my son wouldn’t have had a major seizure.’ We torture ourselves with these thoughts.

I think a lot about the space between hope and despair, and where can we pause and locate hope and possibility when we’re in the thick of providing intensive care to someone else.

In our book, we talk about care mapping, and doing an audit of our daily activities a bit more dispassionately, to see if we can locate the possibility of doing something that is more positive.

Pick three things out of everything I have to do every day that I wish someone else would do. Many tasks we do for our children we want to keep, because we know them best. But maybe I really wish someone else would clean my house or walk my dog.

Then you begin to have a critical think about who could do that. Who do I know who could do these three things? What are some hidden resources in the community? It’s about breaking down a big task into smaller tasks, and finding someone whose interests and talents match that small task.

BLOOM: What do you say to parents like me that look at some of the practical tools in your book—like care mapping—and think I don’t have the time to do this planning. Or I just wish at this stage that I didn’t have these responsibilities, so I resist it.

Donna Thomson: Every chapter in our book has a section called A New Way of Seeing and Being. What we tried to present in each chapter was a particular reality that could be quite harsh—such as life-long care responsibilities, and how that impacts our personal choices, hopes, wellbeing and health. We don’t whitewash or sugar coat things. But we encourage shifting our perspective, just a little, in order to allow more balance in our life, and more peace in our heart.

An example is self-care. Many people think that the only time they can do self-care is when they’re off by themselves. I’m really interested in the idea of self-care with the people we love.

I have to feed Nicholas, and it takes about half an hour, and I have to watch what his mouth is doing. So I used to say 'I’ll make my own lunch later.' A shift in thinking would be ‘I’m going to make two lunches, and we’re going to eat together. I’m not always going to put myself second.’

Maybe my son is seeking out a sunbeam in the room because he wants to be in the sun. So I’ll pull out a chair and we’ll sit together.

Many of the things we do for our children involve comfort. I used to put the towels in the dryer before a bath, so that I could wrap Nicholas in a warm towel after his bath. Self-care is giving that kind of comfort to ourselves.

About two-thirds of our book is about making peace with realities, giving yourself the gift of acceptance, and allowing yourself to be filled up with happiness in a moment that you might not have before, because there’s no achievement attached to it.

I remember giving a self-care workshop to a group of parents with children with fetal alcohol syndrome. I asked them ‘What does a break look like, and how do you have one with your child?’ One woman said her idea of a break was going on holiday and visiting ‘with a family who gets us.’ She said respite wasn’t leaving her child, but being with others who completely accept them for who they are.

This puts an end to ‘I wish I was somewhere else’ or ‘I wish my child was someone else,’ and going somewhere with people who are totally accepting of us for who we are, in the moment. It’s figuring out how to get to the point where you’re just okay with stuff.

You’re okay with the fact that your child may never leave home, or his care needs will never significantly change. You consider ‘What does a good life look like for us all, individually and collectively as a family?’ You accept that ‘this is normal for us.’

Everyone’s situation is so complicated and so different. There are no prescriptions in this book. What we did was draw out some ideas, like seeds, and say maybe it’s going to grow, and maybe it’s not. But here are a few possibilities and ideas. We encourage people to read the book and see what resonates, and dispense with what doesn’t.

BLOOM: What do you hope readers take away?

Donna Thomson: Optimism. A sense of possibility, and a little bit more control and happiness.

You can follow Dr. Zachary White at The Unprepared Caregiver, and Donna Thomson at The Caregivers’ Living Room.