breathing through dementia

BREATHING THROUGH DEMENTIA

Dementia is more than a disease. It is a slow unraveling of identity for the one afflicted and a heartbreaking journey for the loved ones. As my mother's primary caregiver for over 12 years, I've gained invaluable first-hand experience that I feel compelled to share. This journey has deeply shaped my understanding of caregiving and its unique challenges. Mom is in a full care home now, but the effort to get her there was tantamount to an emotional marathon, and I was exhausted by the time mom finally entered her full care home in November of 2020.

THE PAST

I had been advocating for mom for almost 6 years within the health care system. I was now managing appointments and all medications. I had growing concerns about mom’s personal safety. The emotional strain was exhausting. I was working full time and meeting mom's needs as well as my own. There were days when I had to talk mom off a ledge of panic while I was at work. At first, I couldn’t make sense of the reason for these terrible panic attacks. I also was annoyed because I was feeling like— What Is Going On? My mom had always been so level headed while we were growing up, and I went to her about everything. Paranoia was now creeping into her mind and especially at night. I was soon to learn about the late night panic roaming, fire or some other disaster, from friends and people in her building. I would later come to know these episodes as dementia-related panic attacks. Suddenly, the mother I knew was slipping away in front of my eyes. It was a sad realization. I was mourning the loss of who she was and who she was becoming. It was so frustrating and heartbreaking at the same time. Her family doctor suggested we get on a list for an assisted living residence. This was to become the most frustrating time of my life. Mom fought this notion hard. The system was harder.

BREATHWORK

My siblings and I used to do yoga together with mom when we were younger. Mom followed a show in the 70's called “Kareen's Yoga” religiously. My sister and brother suffered from chronic asthma. I believe this was partly the reason we all engaged in Yoga. It was fun for us. I first learned breathing exercises when I was eleven. Yoga was something that stayed with me, thanks to my mom.

I encouraged mom to breathe with me when she was anxious as I knew she would have a memory of it. She readily breathed along with me in person and over the phone. That's how I would talk her down from a panic attack when I couldn’t rush over. Breathing was to become the most powerful resource in my toolkit of support. I learned how to regulate mom's nervous system just by slow deep breathing. Little did I know then that breathwork would be an anchor for both of us.

In 2014, two days before Christmas celebrations with the family in Whistler, my mom collapsed in front of me with an aortic dissection. She was 79 years old. At the hospital she was given a 50/50 chance of survival and underwent open heart surgery to repair her aortic valve that had burst. She survived this. At first, I wasn't sure how it would go. It was a 6 week recovery. Longer than most. She was stable and able to do most of the things that she needed to do for herself. Nurses were coming to check on her. I took care of cleaning and shopping. The fight for a place and her eligibility was unrelenting.

When mom finally got approved and moved into her assisted living building, it was barely 6 weeks before they informed me mom needed to be in a locked down full care dementia floor! I could write a book on the six years of endlessly being run around by the system’s managers, changing my mom's caseworkers, and never getting the help we so desperately needed at the time. It was the most unprofessional and poorly managed department I have ever had to deal with in the care system. I don’t envy anyone going through this; it's a hard path. You need to be resilient.

We were now through most of the first of Covid lockdowns and presently going through the next wave of restrictions. This had been a challenging time for all of us. Finally we got mom settled into her full care home at the end of 2020.

I was ready for a nervous breakdown.

During a course I was attending in sound healing, I had a full-blown cathartic release while doing a breathing meditation exercise. I was in dire need of self-care after years of dealing with everything with mom by myself, the medical system that did not help, balancing work, personal life and then Covid!

I was helped through this experience by a couple of women in the room. It was through the breathing that I realized afterward, had triggered the response of that first release of many to come, in my own healing journey.

On further exploration of breathwork, I found ®Breathwave International, where I entered a retreat for two weeks and a much-needed reset of my own nervous system. This was the most important thing that I ever did for myself. What I learned in those two weeks about myself gave me a greater understanding of all the unresolved trauma that my own mother was sitting with. I started to put the pieces of the puzzle of her life together and in doing so, sorted out my own early childhood trauma in the months to come. I later went on to continue this wonderful method of breathing to become a certified breathwork facilitator. If there is one thing I have learned through this journey with my mom, it’s that you must take care of yourself first, before you can take care of anyone else.

Even though I had finished all my certifications for breathwork, I still ended up leaving the country and my mother in her care home for 10 months while I recuperated from caregiver burnout. I just wanted to escape from it all. It was tough leaving, but I had to do this for myself. I’m grateful to be back in Vancouver now and things are much better. I still advocate for mom frequently, but I am more grounded in my response to issues I feel need addressing. I am looking for solutions now that can be implemented in my mother's care home, not just for her, but for everyone.

Breathing will not reverse mom’s dementia, but it offers something beautiful for us; Presence. In those fleeting moments where her memory fades and her words become jumbled, breathwork reminds us that we are still here, still connected and still capable of finding peace in the middle of chaos. If you're caring for a loved one with dementia, I encourage you to try it. Sit with them, breathe with them, breathe for them, and see how this small act of mindfulness can bring comfort to both of you.

If you are a caregiver struggling—you’re not alone. I created the Caregiver Burnout Recovery course just for you—to help you regain energy, peace and balance.

Book a free discovery consult here.

Or enroll in the course now.
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