Artist in residence spotlight: “Better at Home” is not always better

When I first started to notice subtle changes in my mom, I became frustrated. Looking back, I was in total denial. The transition was tough for both of us. I was losing my mom. My rock.  

In 2014, Mom suffered an aortic dissection and survived open-heart surgery, but it took a toll on both of us. After several weeks in hospital, she recovered physically; however, she declined further cognitively. The doctors agreed Mom needed assisted living. The loss of her independence was difficult for both of us. Mom fought it hard. It was heartbreaking to watch.  

Who are you when your mom or dad, sister, brother or partner no longer sees you as they once did?  

As my mom's identity began to fade, part of my identity faded too. As her dementia progressed, an uneasy feeling of abandonment began to set in. Our roles were reversing. There is no sudden closure, only the slow progression of dementia. Sometimes, it's only when you look back that you understand the emotions you've been going through. Grief, anger and loneliness were just a few that ran through me.  

Over the years following her surgery, Mom went through several assessments, rarely with the same person. During assessments, she often appeared more capable than she was at home, a phenomenon known as “showtiming.” Meanwhile, countless incidents at home put her safety at risk. It was so frustrating!  

Finally, after years of struggling to secure an assisted-living placement for Mom, she was accepted.  

It lasted only six weeks!  

Management decided a higher level of care was needed and transferred her to a secure care unit for people living with dementia.  

I was livid. It had taken years of working to get the healthcare system to understand how bad things had become at home. Mom could have been so much safer in an assisted living home all this time. For many caregivers, “Better at home” is not always better, especially when remaining at home puts the person living with dementia at risk and pushes their caregiver toward burnout.  

From 2017 to 2020, during some of the toughest years of caring for Mom, I began exploring Reiki, conscious connected breathwork and sound healing for my own well-being. Simple breathing practices helped me slow down, relax and calm my nervous system. This helped me immensely.  

Breathing practices were already familiar to our family. When we were children, my brother and sister had chronic asthma and practiced Buteyko breathing. We also enjoyed Kareen's Yoga, one of the first yoga programs on Canadian television in the 1970s. That was where we first began practicing yoga and breathing.  

Over the tough years, I brought breathing back to Mom during her many episodes of anxiety, and it helped her tremendously. Even now, when I sit quietly beside her and just breathe, she slowly begins to unwind and relax.  

Moving Mom into a care home did not end my role as her caregiver. I still had much to learn and had to continue advocating strongly on her behalf. Once I knew she was finally safe, I took a ten-month sabbatical out of the country to recover. I had been so close to burnout.  

It's been over 12 years, and I've learned that caring for myself is not separate from caring for Mom. When I can steady myself, I am better able to be present for her and for others. Sometimes, when so much else has been taken away, the simplest thing we can offer our loved one—and, most importantly, ourselves—is our calm presence and our breath.