Donna Thomson cares for her son and her mother. She is the author of The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving. Donna also consults on family caregiving to both home health and hospital group and sits on several boards relating to health research and networks of support for families giving care. She helps families advocate for care in her workshop, How to Know What You Need and Get What You Want.

Where and when do you feel most competent? I feel most competent when I am in conversation with my loved ones. My son is non-speaking because of his disability, but he uses eye pointing, tongue clicks and a variety of other creative strategies to tell me what’s on his mind. I’m a good de-coder of his language. His paid caregivers know his language tricks too, but I’m the best translator. Because I know him so well, we have long conversations using very few words. I feel competent when I’m in conversation with my Mom, too. The trick to understanding her is to set aside a whole afternoon for chat. It takes her a while to open up. She doesn’t trust her short-term memory, so that leads her to shut down the conversation with meaningless pleasantries. It takes patience to probe and I feel elated when I find out what’s really going on with her.

With what do you struggle? I struggle when I feel misunderstood by members of my family, by our home care workers, or by doctors. Caring for our son and for my Mom involves making a lot of choices and expressing lots of opinions. Nurturing relationships with members of the care team can be tricky. Sometimes, when friction inevitably occurs, I lie awake at night re-playing conversations in my head.

What one thing do you wish you had more time for? I wish I had more time on this earth. I’m nearly 61, but until a couple of years ago, I was caring full-time. There is so much I would like to do before I die! I feel like I’ve just begun my career as a writer and caregiver activist. I wish I had more time to read, to write and reflect. I’m still trying to understand the meaning of my caregiving experience – the meaning for me personally and the implications of a life given to care for society generally.

With what do you wish you had more help? At the moment, our family is doing fine with the amount of help we have. But it wasn’t always so. For almost 25 years, we had some help, but not nearly enough to compensate for our son’s 24-hour nursing needs. We got through it, but only after suffering burnout. Our catastrophic circumstances at home actually helped us access the level of paid support we have now. Unfortunately, our systems of support only kick in at times of real emergency rather than supporting us over time. It’s a sad fact that caregivers have to fail before we are allowed to succeed.

Where do you find support? I find support in our family and in the caregiver community. Over the years, I have made close friends of other caregivers whom I’ve never actually met. We know each other’s loved ones, we write often and we even exchange Christmas gifts. The Internet has made caregiving a far less lonely occupation. The Internet has made caregiving a far less lonely occupation - @thomsod Click To TweetI feel very, very lucky that everyone in our family loves our son and my Mom. They visit often and everyone makes a contribution to ensure that our loved ones have a good life.

What is your best habit? I dance every day. I do Latin ballroom, zumba, samba…sometimes in the studio and sometimes in my living room. My body feels strong and I inevitably end up laughing when I dance. My fantasy is that I’m 18 and clubbing.

If you knew then, what you know now… Over the years, I’ve learned that older doctors know more than younger doctors. I’ve learned that sometimes it is best to do nothing but listen. Taking action isn’t always the right path and having control of the future is a fantasy. These are lessons I’ve learned the hard way.

What would you like to see employers do more of to help caregivers?  I would like to see every employer have a caregiver support policy. Embedded in that policy would be the imperative to innovate continuously to create solutions for individual employees. I’d like to see Corporate Social Responsibility strategies include family caregiving time away from the office. It doesn’t make sense to me that CSR strategies often involve supporting a youth center down the road, but employees are penalized for taking time off to care for an elderly parent.

What would you like to see medical professionals do more of to support caregivers? I would like to see family caregivers be recognized as equal partners within the circle of care. I would like to see physicians give us the knowledge we need to make decisions, but also to recommend a course of action and then to support us after our treatment decision is made. I would like to see home care recognized as an extension of hospital care with a communication tool that links home to clinic. I believe family care would be more valued and supported if medical schools insisted on a community rotation within family homes where care is being given.

What do you admire in/about other caregivers? I admire their loyalty and resilience. I admire their black humor. I admire their ferocity and their gentleness.

What is your motto? I have two.

• Calm down, sit down and listen.
• My loved ones’ care needs are separate from their personalities.

Caregiving: a blessing or a burden? Here’s something I wrote recently that begins to answer that question: A realization dawns that the call to care is not a call to battle. It is a quiet truce in a land that is foreign to most other people. Here, there is the possibility of intimacy, of reflecting on hopes, dreams and on mortality. Here, there is the chance to be grateful for small joys and tender mercies. Here, there is the opportunity to know what is most important about being alive.