I was slipping away. A couple of weeks earlier I’d fallen on the stairs and suffered a traumatic brain injury. My nervous system was misfiring in all directions and an arrhythmia left me bedridden. Heart, breath, and consciousness were fading.
From somewhere deep inside, I was roused by a surge of electrical pinpricks that shot up my spinal column, from the pit of my abdomen, through my heart, to the centre of my brain, like an internal defibrillator jolting me back to life with a pounding heart.
Over time I recovered, but my injuries were severe. I had to adapt to living with long-term disabilities. Mobility challenges, vision impairments, a heart condition, chronic migraines, and memory loss to name a few. I was lucky to regain full mobility after a couple of years, but other issues still limit my day-to-day functioning. I won’t lie. The experience has been the greatest challenge of my life.
It was also a great gift. By going through it, I gained deep insight into what it’s like for a person with disabilities like mine, and what kind of support is needed to navigate a world designed for fully fit, healthy, and functional people.
As death doulas, we work with people whose abilities and limitations are changing day to day. Offering accessible support means having an awareness of and sensitivity to the barriers faced by our clients.
The 21%
Disabilities are as diverse and complex as the number of people who live with them. That number, according to Statistics Canada, is 6.2 million Canadians—a whopping 21% of the general population.
The most common type of disability is pain related. Others include trouble with mobility, mental health, hearing, seeing, learning, memory, and developmental disabilities. Most people with disabilities have two or more at the same time. Some are mild, while others severely impact a person’s ability to function day to day.
Many, if not all, of the people cared for by death doulas are grappling with some type of disability. The limitations might be new to them, and they are learning how to adjust to disability after long and healthy lives. Others will have been living with disabilities since their early years. They might already have effective ways to cope with barriers, but as they move towards death, the barriers could become more challenging.
For people facing new disabilities, the things they used to rely on for their comfort, happiness, and well-being might not be accessible anymore. When my disabilities were at their most severe, I couldn’t read because my eyes lost the ability to focus and track a line on the page. I couldn’t relax to my favourite music or radio programs because noise sent my nervous system into a tailspin. The fatigue that followed social interactions was so debilitating that an hour’s worth of conversation with a good friend would cost me two days of bed rest.
In fact, isolation is a common side effect of disability, and the simple presence of a death doula is a valuable antidote to that loneliness.
How to Support People with Disabilities
The best approach to supporting people with disabilities comes from a place of presence and empathy.
Be aware that not everyone likes the label ‘disability’ and may not see themselves as disabled. Use the same language your client uses to describe their limitations and challenges.
What a client says may or may not be an accurate reflection of their true condition. It’s important to observe body language, changes in behaviour, vitality of the eyes, breathing patterns, and overall energy.
Speak to other caregivers and family members to get some perspective on the impact of their disabilities. These caregivers likely already have good ideas on how to support your client as they adapt to their functional limitations.
Notice if extra support is needed (e.g., handrails, mobility devices, financial aid, etc.) and help your client advocate for it by talking with their medical team about supports available for people with disabilities.
Explore what is accessible to your client on any given day, recognizing that some days are better than others. Attune yourself to your client’s abilities and needs in the moment and come prepared with a Plan B.
If your client is having an acute flare up of arthritis, for example, will they be able to sit comfortably at the table with you to work on a legacy project or an art therapy practice? Do you have alternative activities for those days? If they have cognitive issues and are struggling to communicate their thoughts, how will you talk with them about planning their vigil? Can you use pictures to help consolidate your words? These are just a couple of scenarios where you might need to approach your work a bit differently to make it accessible.
You Can Try This at Home
Accessibility is a priority in my yoga practice for end-of-life care. What I do is very different from what people usually think of when they think about yoga. The best place to do palliative yoga is at the bedside, not at a gym or studio. It’s not a workout. If gentle movement brings comfort, that’s great, but my emphasis is on breathing practices, visualization, and meditation.
Many asanas, or the physical postures of yoga, can be done lying down or even in complete stillness, using visualization to exercise and soothe the nervous system without taxing the body. In fact, visualization is used by athletes in their training—it’s an evidence-based technique for improving motor skills and performance.
Try it out for yourself. To visualize a simple asana, the way athletes do, lie down comfortably on your bed or under your blanket. Be still, with your eyes closed. In your mind’s eye, stand tall in tadasana (mountain pose) with a straight, strong, relaxed spine. Your feet are grounded evenly from right to left, front to back. Your shoulders are aligned above your hips and your hips are above your ankles. You can imagine a sense of balance that leaves your whole body feeling even and light.
Imagination gives you the freedom to play. So why not picture yourself standing in this pose with your feet nestled in the warm sand of your favourite beach holiday? Imagine the sound of waves rolling on the shore and the feeling of warm air on your skin.
Then bring your attention to your breath as it gently comes into your lungs and goes out, just like the waves of the sea, rhythmic and soothing to the ear. Invite your breath to deepen and lengthen for a few breaths. After 3-5 long breaths, let go of any effort to control your breathing. Simply attune yourself to the natural rhythm of your inhale and exhale, without judgment or effort. Just notice the gentle sound of your breath, the feeling of cool or warm air as it passes through your nostrils, the expansion and contraction of your ribcage as your lungs fill up and empty out, the subtle sense of awakening with each inhalation, and relaxing with each exhalation.
Your breath is a constant companion. Both mind and body benefit from a few minutes spent tuning into its rhythm. With daily practice, you will find that you can turn to your breath for comfort during stressful times.
How healing does that practice feel? Compare that to how it might feel if, instead of visualizing, you actually tried to struggle to get out of bed, if your spine was rounded and arthritic, and your feet were swollen and painful?
Some people do benefit from gentle, supported movement, in which case their yoga practice can be more active, even near the end of life.
Finding Joy Within Disability
Death doulas learn to work within people’s limitations and help remove barriers for people with disabilities every day. Whatever activities, therapies, or modalities bring your clients a sense of well-being, wherever they find joy, stay open to how these things evolve when special accommodations are needed to enjoy old activities, or when it’s time to try something new that’s more accessible.
To pass the hours of bed rest when I couldn’t read or listen to the radio, I took up knitting and crochet. Once my noise sensitivity calmed down, I got into audiobooks. I moved my yoga mat to the floor by the foot of my bed, so even though it was too difficult to go downstairs for a while, I could still practice some gentle movement. Three years on, I know how lucky I am to recover from the most severe impacts of my injury and it’s an honour to take what I learned to support people facing the end of life.
If you spend time learning from your clients with disabilities, through close observation and empathy, you will find the best ways to practice accessible end-of-life care.
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Erika McDougall is a certified yoga teacher and death doula candidate with Home Hospice Association. You can reach her at ewes2410@homehospiceassociation.org