Navigating the painful transition from being cared for to caring for my mom

Catherine Mulvale | @camulvale

Once upon a time, I had a 10 per cent chance of surviving a life-threatening infection. In a matter of hours, I went from experiencing painful symptoms to a full-on fight for my life. The battle included eight operations in 23 days, the removal of 11 necrotic (rotten) muscles and a portion of one shoulder blade, and six weeks of accommodations in luxury ICU suites. 

I was no longer an active and fiercely independent mom of two small children. I had become a broken, scared, and exhausted patient who was totally reliant on an army of strangers staffing surgical suites and hospital rooms, performing endless diagnostic tests, and offering rehabilitation strategies and home care services.  

Fighting the illness and rebuilding my body and life meant handing over my children, my work, and my independence indefinitely and at an inconvenient time. It was not an easy transition for a triple-A personality with a tendency to try to manage, well, everything.

My sister and mother experienced similar health crises. Both were remarkably strong women broken by chronic illnesses. My sister died at 44 from idiopathic pulmonary fibrosis. My mom is currently living with advanced vascular dementia, which is ravaging her mind and body. 

“Compassion from a caregiver can be as important as medicine. Compassion and empathy help calm the mind, which allows the body to heal.”

I became a caregiver for each of them. This was not a role I wanted. It’s excruciatingly difficult to watch someone you love suffer and deteriorate. It changes you – deeply, profoundly, and permanently. However, if anyone is qualified to be a caregiver, I think it would be me. I’m educated in health sciences. I’ve worked closely with health care professionals as the leader of several national health charities. And I’ve been a patient who learned invaluable lessons that prepared me for the role.

I learned to be humble. Despite the beliefs of my younger self, I know now that I’m vulnerable to the same threats as everyone else. Health, strength, happiness, and wealth can be stolen in an instant. 

I learned to be more compassionate. I had horrendous scars. They were the outward signs of my health battle – past and present. Most of them have faded or been reduced, but fears of another invasive infection still haunt me on a daily basis. My internal battle is a reminder that outward appearances don’t always reflect what someone is going through. Compassion from a caregiver can be as important as medicine. Compassion and empathy help calm the mind, which allows the body to heal. 

I learned to be patient. Getting a diagnosis takes time. Healing – physically, emotionally, mentally – takes time. Supporting someone through a chronic illness takes time. Being patient and spending time with people fighting illness can be extremely difficult. Patience is often rewarded with answers, health breakthroughs, and powerful, comforting memories.

I learned that accepting support is as important as giving it. Contrary to popular belief, it’s not all about the patient. Entire professional health teams help patients fight, heal, and recover. However, I think we sometimes forget that when someone is unwell, their entire tribe – family, friends, those who love them – is also deeply affected emotionally, psychologically, and physically. Members of their tribe also need rest, encouragement, and reassurance. 

I learned that advocacy is essential to getting the best care. Patients struggle to think clearly, ask difficult questions, and process information. They’re often weak, in pain, confused, and scared. They aren’t themselves and need someone to look out for their best interests.

I’m not shy to declare that I’ve become an excellent advocate. I credit my mom for helping me build superpowers in this area. She taught me so much when I was unwell and she was advocating for me. Her actions taught me to be brave, relentless, positive, and kind. 

Today, I have the responsibility and privilege to be my mom’s guardian, interpreter, and voice. I’m the one constant in a world that confuses her and that’s comprised of a constantly-changing team of health care professionals she doesn’t know or remember. 

As her advocate, I’m dedicated to ensuring she lives her best life despite the cruel restrictions that vascular dementia impose on her body and brain. The ability to focus, gather and organize information, recruit impactful people for her care, recognize and explain symptoms, insist certain tests be done, identify deficiencies, recall health histories, underscore drug reactions, understand what’s important, and make sure others do the same are invaluable skills.

Transitioning from a patient to a caregiver has been incredibly difficult but it has also brought me great joy. I’m confident that my actions brought my sister and mom comfort, improved care, and moments that may not have happened otherwise. While I wouldn’t wish my experiences as a patient or caregiver on anyone, I’m thankful for the wisdom that comes from being a patient because it gifted me the privilege of effectively and compassionately caring for two extraordinary women whom I have loved completely throughout my life.

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