Early this summer, it became apparent that people I love are making their end of life journeys. We don’t know how long these journeys will take, but we are very aware that we’re on the path. It has definitely been a mythical abduction experience.
The first thing I noticed after processing the news is how little I know about dying. My mother died just over 20 years ago, but life circumstances prevented me from being near her in her final months. I’ve never had the experience of being in the process with someone near the end of their life.
Dying is not something we talk much about in our culture. We’re bombarded with messages about how if we eat the right food, do the right exercise regimen, and measure various aspects of our health regularly, we can “age independently”.
Here’s what I’m learning about life and aging in my up close and personal experience so far. Independence, as our culture teaches it, is an illusion. Needing help is not a failure. “Aging independently” is not actually the sign of a life well lived, nor is it even realistic.
In our separation from the cycles of nature, we have lost touch with the truth that interdependence is what allows us all to thrive. It is in interdependence that we begin to experience the intrinsic value of every member of the community, rather than productivity being the measuring stick.
In my experience, as our elders become less able to care for themselves, we, their family, are experiencing a new quality of relationship with them. There is a new softness between us, a tenderness in the giving and receiving of care. There is also weariness, compassion fatigue and frustration. We are reminded daily that relationships include all the flavours of emotion.
I’ve also been learning about the contrast between the “quick death” that was the norm in our grandparents’ day and the now much more common “slow death”—a series of gradual losses and diminishment until the end quietly arrives.
The journey of slow death tends to be arduous. It invites a continuous presence to what is real in this moment, including where one needs to be able to accept help, and where one must make choices about whether the goal is to live as many days as possible, or to live each individual day with as much meaning as possible.
This journey is also arduous for those who support. There is grief in watching the incremental diminishments. There is the work of being present to my own feelings and reactions so that I can provide compassionate presence for theirs. For all of us, there is the looming uncertainty. We know where this path is taking us, but we have no idea how long it will take or what the end will look like.
I am part of the support network for two people who are on this journey. This part of their lives has not turned out at all like they had hoped, and watching them wrestle with their losses is heartbreaking. There is also still a significant amount of denial about being on this path, along with anger at needing help, both of which make providing them with support that much more challenging.
The cultural denial of death adds to the weight of our loved ones’ experience. As a society, we keep death “off-screen”, as it were, hidden in hospitals, nursing homes and hospice facilities. We don’t talk about it in general conversation.
Thus, in the cases of the people I love, there has been no conversation with family about how our loved ones want to experience their final days. We, the caregivers, are doing the best we can to provide supportive, compassionate care, but most of the time, we’re guessing as to what is needed. More frequently than we’d like, the support we want to offer is pushed away.
And so, for me, it is a journey of humility. Daily I’m reminded that, while this experience affects me, it is not about me. I’m invited continuously to simply offer presence, to just be with those I love as they make their way through that which they would most like to avoid, and to tend myself as tenderly as I tend them.
I heard it said once that “dying is hard”. Until this summer, that statement didn’t really make sense. I interpreted it to mean that death is hard, that losing someone is hard. Both of those remain true. However, now I understand the meaning of the original statement. The process of dying is hard, both for the person dying and for those who love them. I see the struggle to accept how the body hurts, fails and doesn’t live up to expectations. I feel the struggle to stay present to that which I cannot alleviate, fix or soothe.
I’m also learning how important the soul-skill of surrender is. My hope is that by intentionally practicing the acceptance of what is, rather than fighting against what I don’t like, I will grow in myself the ability to meet my own aging process with grace. I don’t expect to like all of it, but I do hope to be able to be able to soften around it as it comes.
My prayer is a paraphrase of one uttered by the Psalmist. “Teach me to tend each of my days so that, as my body fades, my soul may continue its growth in wisdom.”
