Halifax author shines light on challenges within long-term care in new graphic novel

A new graphic novel written and illustrated by a Halifax author is shining a light on the challenges that come with having a parent or loved one in long-term care. 

Susan MacLeod spent nine years helping her mother find her way through the system, and that was after three years of being a government spokesperson for continuing care in Nova Scotia.

Her graphic memoir, Dying for Attention, was released in October.

Portia Clark, host of CBC Radio's Information Morning Halifax, spoke with MacLeod about the graphic novel on Wednesday.

This discussion has been edited for length and clarity.

Susan, you started your book well before COVID-19 made us all think more about long-term care in our country and how people experience that. What got you thinking about this and about writing about your own experience?

Nine years is a long time to be in the system and to be with a loved one who is going through the various levels in the system. I got to see it in all its gaps and its glory, if you will, more gaps than glory. 

When I came out of that after nine years when my mother died, I felt I had to tell this story because it was a very isolating experience. There didn't seem to be much support around either for my mother or for myself. 

And when COVID hit and all the gaps became apparent, it was no surprise — and I've spoken to other people who knew long-term care before COVID —  it's no surprise the gaps were there. We could see it and so when all the failings became apparent in a very rather horrific way, those of us who knew it were not surprised.

What were the kind of things that you ran into, where you experienced that power imbalance and feeling like you were on the outside when you were trying to get better care for your mom? 

Well, the absurdities were when I would go to the nursing home executive director and say, "Her call bell is never answered. In fact, it's often not even in sight. Why is this? What can I do?"

I was never angry, and the book is not an angry book, nor does it lay blame because I think we're all in a bind in this system. 

But what the nursing home would tell me is, "Well, you've got to write the funders. We're understaffed, and we just don't have time to answer people's call bells." 

As you say, a lot of people experience this and you're trying to help people feel a little bit less lonely and show them that there's these common experiences that you have with a loved one or a parent, trying to advocate for them. Why did it feel like the right route to take to put it in the form of a graphic novel, rather than just writing about it? 

Well, I have a bachelor of fine arts from years ago, from a long time ago. I had spent my career writing and public relations writing or communications writing, which can be a bit soul-numbing. Public relations people don't lie, I want to make that clear, but we're writing in a formula. We're obviously accentuating the positive, if you will. 

I was tired of writing and so at this point after I retired and when I had more time after my mother died, I wanted to see if I could bring the skills from my fine arts degree to bear and tell this story by drawing it. 

It's quite funny in a lot of spots, and you can tell you've lived through a lot of the things that you're illustrating. Tell me how that affected you as you put some of those experiences into that, that kind of a form or maybe even saw them a little bit differently. 

I tried always to see the humour in it, and like I say, I didn't want it to be an angry book or blaming book. No one wants to read that. 

There are a lot of absurdities and for someone who's exhausted — because it is an exhausting process to advocate when no one wants to hear from you — I thought it would be more accessible for someone in that position if it were drawn and if the emotions were there visibly on a cartoon face, if you will, and if it were funny, because this is life and death and it's heavy. 

So I wanted to make it lighter and that's why I drew it and that's why I made it funny. I tried to make it funny, although it's still very serious. 

Did it transform your relationship, having your mom go into care? You do focus quite a bit on how relationships and families change at this stage.

Definitely. My mother and I weren't close at all, and I had kind of hoped I could put her in a nursing home and visit once a week and that would be that.

But I saw that she was quite terrified to be in the nursing home and that there wasn't a lot of one-on-one care, so in saying that she needed me and I was the only person in the province really close by, I visited her more and more regularly.

And in doing that and in paying attention to her and to her needs, instead of thinking about me and my needs and how she never met them and all those kinds of mother-daughter relationship things, I grew to love her. I saw her point of view, I saw what she had gone through and I understood her family history better. 

So by the time she died, we had quite a very mutually fond, mutually loving relationship, which I had never expected. 

So that was the happy upside of it all and I'm very grateful for that. I think it is a very meaningful experience for people if you're not always fighting the system. 

Do you think she would have liked your book? 

I think she would have. I kept thinking about that when I was writing it, I was thinking, "Oh, mom, I think you would be very proud," because I never saw the strength in her until she was aging. 

She died at 99 and in writing the book, I felt that I was drawing on strengths that I had learned from her. I saw life through her point of view, and that was invaluable.