Accepting Uncertainty and Embracing Responsibility

Finding Surrender and Humility in the Messy of End-of-Life

I really cannot wait to get back to writing long essays about physiological birth, the depth of women’s experience and capacity, and all the rest. But, for now, my focus and brainspace is on the real and the raw. 

And that’s okay.

I love being an intellectually-minded researcher, digging ever deeper into a topic until I’ve read and learned so much my head might explode if I don’t write and share about it.

But you know what I love more?

The humbling journey of being demanded to be fully present in life RIGHT NOW. 

As a young woman, these kinds of experiences scared me and made me feel emotionally chaotic. As an older woman, I approach these experiences knowing they will be hard, but I also welcome them in because I know that, through practicing surrender, I get to experience the fires of much-wanted transformation. 

At the end, I get to be someone I more deeply understand. Someone wiser. Someone more beautifully worn by life. Still a mystery. But also a person who more deeply understands the complexities of what it means to be a human being.

End-of-Life Is Not Linear or Predictable

Unexpectedly bringing my mother into my home (and with so much drama surrounding the situation) was a LOT. I thought I was bringing home a dying woman, and the death midwife inside of me was prepared and ready. I was ready to build the beautiful death nest, offer endless love and compassion as she walked across the rainbow bridge, preparing a cozy cocoon for us both to sink into as we journeyed together.

And then, as life often goes, my mother instead got slowly better and stronger (it’s amazing what love, rest, and real food can do), even recovering some of her mental clarity again (some, not all). Days turned into weeks and weeks turned into months.

I became completely emotionally hammered, despite taking very good care of myself. I’m excellent at shorter intense experiences. But long drawn out ones with no end in sight? The neverending limbo space of living each day watching and waiting for signs of what might come next? That is a much harder ask for anyone. Waiting, and waiting, and waiting is very, very hard on our mental health.

Family Support is Often a Scarce Resource

I won’t publish specific derogatory things about my family, as I don’t think that’s very tasteful or fair to them. However, I will say that my 6 older half-siblings were raised by their father with wealth and entitlement, and I was raised alone in a cozy kind of educated single mother poverty. My siblings and I see things very differently, we access resources differently, we perceive communication very differently, we perceive the responsibilities and capacities of women and men very differently, and we are strappy in very different ways too.

Spending time with them this summer, in ways I had never done before, I saw up close and in my face that I truly was not a member of their family group, despite their half-hearted attempts to say otherwise.

Though I am a face-reality-head-on kind of person, it’s very different to have these things shoved right up in your face for you to experience in real time. There is a grieving that comes with EXPERIENCING that you are truly alone in your family, despite spending a lifetime KNOWING it. It’s a wisening that ages you instantly. But also? It’s a freeing sensation, allowing one to let go of any false pretenses that might have remained from childhood.

Facing truth is a kind of freedom, as it frees up space that can be occupied by more beautiful, nourishing relationships and experiences.

In every way, this situation with my mother was very much suddenly dumped in my lap with very little support from my siblings (physically, emotionally, or financially). And the heavy injustice of it all wore on me (in some ways) more deeply than the actual act of caring for my mother day and night.

The feminist in me was appalled that as a woman, it was assumed that I would be “available” to take on 100% of the responsibility, without financial support, without reprieve, without much-needed breaks given by siblings… And (as they know nothing of my life, goals, aspirations, or personal issues I’m transforming) I was then also demanded to push pause on anything I was creating or achieving, tell my soon-to-leave-the-nest children I could no longer wander freely with them…and also couldn’t fully function in my work capacity because I was too exhausted in every way to do so. 

(Also? Holding a client call and having to tell said client that I need to call her back because my confused mother has just walked into a wall and fallen…not conducive to focused work, my friends. If you’ve never experienced it, you won’t think of it. Thankfully, I only work with beautiful people who are very understanding.)

The feminist in me was outraged, as I knew that this was common throughout society. Women everywhere YET AGAIN being asked to put their wellbeing, dreams, nervous system health, and goals on hold to mother an adult without support, just when they were starting to find relief from the intensity of the long years spent mothering children.

Caregiver Burnout is Real and Often Unavoidable

After 3 months, I knew I was so exhausted from everything – the constant nervous system dysregulation that is the default interaction between my mother and I (I can never feel totally at ease with her due to her prickly nature and constant criticism - even when she sprinkles in loving words and is pleasant). The exhausting interactions with siblings who prioritize avoiding the situation as much as possible (and must sleep well knowing that their youngest half-sister “has it covered”). 

I spent 2 weeks internally battling between wanting to protect and nurture my mother here at my house, and knowing that I was massively burning out and wouldn’t be able to continue to be a nurturing caregiver for much longer (I’d already had tastes of deep apathy after hard days where my mother was very unkind)… 

Part of being a healthy human is recognizing our true capacities, boundaries, and need for deep nervous system rest.

I recognized that having my mother at my house (my carefully-guarded sanctuary) would not allow me to fully feel at ease ever. As a highly sensitive soul, this was beyond exhausting and caused me deep stress that I don’t normally allow into my life.

It was difficult to sit with the yin-yang nature of these feelings, as I was also acknowledging all the ways in which I had healed over the past 22 years since leaving home as a 17 year old. I was quite impressed with my capacity to walk through this experience with patience, acceptance, and kindness. I did very well caring for my boundaries as much as possible with her here (I truly did).

But no matter how much nervous system work and healing we do, if the other person has not also made the healing changes necessary, our nervous system will always be on high alert (because we are built for safety and survival). And high alert is quite exhausting over time… It’s not healthy, and deserves the clear reinstatement of a boundary.

(Also keep in mind how utterly confusing it is to identify and enforce healthy boundaries in a situation in which an elderly woman has dementia to the point of often not knowing who you are, is on the heels of death, and needs 24/7 body care, entertainment, feeding, and protection from falling. These are complexities that I am now highly aware of that I wasn’t much aware of prior to this experience. Boundaries are not simple or easy in many contexts, despite others on the outside offering the advice of “just have healthy boundaries!”)

And so, due to the many facets of the situation and not knowing how long all of this would go on and on (and not willing to sacrifice my mothering, midwifing, and wellbeing), I finally decided it was best to set my mother up in a lovely, cozy, local assisted living facility.

Next-Level Adulting: Making Hard Choices for Your Parent(s)

If you’ve been abused by a parent, you’ll understand how terrifying it is to sit with that parent and tell them hard things. That they can’t move back to their house because they have dementia (the thing they said they would never get because of their perfect plant-based diet), and instead have to now leave your loving care and move into a facility.

But I did it. I had the conversation. I was real. She tried to stop the conversation multiple times, and I pushed back in assertive kindness. And in the end, she understood and went willingly to the facility.

(Despite the hospice nurse telling me it couldn’t be done and my siblings trying to tell me to just drag her there. Nope. I refuse to force individuals with any kind of lucidity to do anything against their will, and I instead value communication and connection no matter how laborious. And, though it was exhausting and overwhelming, it eventually worked for this situation.)

Though it has been exquisitely relieving having her gone, it has also been heavy going through the adjustment to my mother being cared for by others for many reasons. 

I visit her every single day. I now spend parts of every day surrounded by people with varying degrees of dementia. There is a heavy grief in witnessing and holding that daily. I often watch them, contemplating who they were before. The man who shuffles around trying to escape, who was once a hunter and a hiker…and now can’t tell which way is up. The woman with constant wounds on her face from falling, who wanders around muttering to herself…who means something to someone and did something meaningful in her lifetime, but now can’t recognize any person standing before her.

I’ve seen this all before when I visited my father with advanced Alzheimer’s living in a memory care ward of his local hospital when I was just 16 years old. But I could walk away from that experience. This one is here to stay and is my adult responsibility.

Nothing about this has been clean or clear or easy. 

I wish daily that we lived in times where families shared a homestead, passing the old people around from person to person to share the burden of their care…surrounded by the people they love and feel safe around, with animals, gardens, and children running amuck. Not unnecessarily prolonging life beyond what is ethical, but making the best of what is left to live meaningfully.

There’s a deep grief in this experience that sits next to my grief for mothers and their loss of village support. Our society demands nuclear family isolation in ways that destroys, and then pathologizes the individual, placing the blame on them for not being able to “do it all.” It’s insidious and dangerous, and against our communal biology.

Re-Villaging + Realism

The assisted living facility IS the village now (no caregiver should ever have to give this intensive care alone, though many are forced to). I am pragmatic and deeply grateful for their help. I am grateful that my siblings were willing to step up and help pay for this care (the one way I could finally get them to support my intensive caring for our mother).

And also, I sit with the critique that recognizes how our society has replaced social contracts and interwoven relationships with paid professional services.

In a consumerist society, all things are bought and sold (strangers doing business with strangers)…even the binding relationships that used to be a socially supported responsibility built through reciprocity. And now are simply Google reviews and credit card processors and liability contracts with the State.

Situations like these ask us to pit our ethics and values against each other. They ask us to release philosophies that, in the moment, look more like unrealistic ideals than things we can take action on right now. They ask us to compromise and participate in aspects of the very society we critique. They humble us and ask us to “be realistic in your own time period.”

Sitting With the Dying; Holding the Mother Wound

I spend at least an hour every day sitting by my mother…listening to her cry about her helplessness and loneliness, helping her to process this change in life from independence to almost complete dependence on family and strangers. Sitting with her as she realizes I am very nearly doing all of this for her all by myself (and not knowing how to respond to her realizations, as I am also at a loss with the dynamics of the situation). 

Allowing her some responsibility in this process (she never faced the reality of death and had not prepared a single plan for old age, and “loneliness” is her constant state of mind, regardless of what others do for her)...while also mourning for and with her, and the society that robbed so much from her and then cannot offer her what all human beings deserve.

I have lovingly collected her personal journals, essays, photos, and scribbled notes scattered throughout her home, holding it all with compassion, letting it all seep into the cracks of my being to further teach and propel me forward in my own unraveling work. 

Her notes on the desperation of being a mother who lost her 6 children (including her tiny 4 year old) in a divorce in which the odds were stacked unfairly against her (AKA stay-at-home mothers don’t have the financial luxury of legally fighting their careered and moneyed and networked soon-to-be ex-husbands). Her wandering essays written for college (something she was achieving during my whole childhood),  in which she ruminated on the injustices of being a woman in a society that hates women (in her own words and expressions, of course). The reflections in which she both unknowingly critiques the religion in which she is so deeply embedded, and then in the next breath props up the male leaders as saviors.

She is the reason I can see and hold complexity. She is the reason I can see so clearly the injustice that is served to mothers and their babies. She has asked from me throughout my whole life to hold space as she processes and processes and processes, never making headway and instead always getting lost upstream unable to ever return to the renewing headwaters. She is the reason I understand what mental health is and isn’t, and why some people get so stuck. She’s the reason I thoroughly understand boundaries and what happens when a child isn’t allowed to have any (and the laborious process it is as an adult to re-mother oneself into self-loving boundaries).

She is the reason I’ve never felt unable to do something just because I’m female. She and her maternal lineage are very much the cause of my deep interest in witnessing and holding the Mother Wound with compassion for both mothers and their children. She is the reason I can both hold an adult accountable for their behaviors and choices, while also offering them immense compassion (sometimes at a distance, as the situation dictates).

I’ve spent a lot of my life seeking peace and nervous system ease. It’s my whole life motto. But, situations like these drop us directly into the fray, not offering us an easy way out and demanding that we humbly face the complexities of what it means to be a human on earth at this moment. No New Age catch-phrases, affirmations, or nice words all tied up with a fluffy bow can ever erase the rawness of real life. To attempt this is to actively practice spiritual bypassing, which is the antithesis of my life’s commitment to embodiment and dancing with the certainty of uncertainty.

This is shadow work. This is accepting that life is fucking messy and we have zero control over that. This is sinking into the (perceived) chaos of the universe, feeling small and humble, knowing that Being Here Now is our job. Nothing more, nothing less.

We’re asked to sit in the fire until it has worn itself out and we’re allowed to walk on, now with new scars and humanity’s heaviness to respectfully carry with us. We leave the fire a bit more unraveled, a tiny bit more refined in wisdom, and carrying more of the collective responsibility that eventually leads us to Elderhood at the end of our lives (if we are willing).

I do not mind this. I have always been drawn to the hard and the heavy. But it is very, very exhausting and I acutely feel the ragged edges of a resilient nervous system that has been pushed to the very edge and now requires deep rest in order to feel fully present once again. This requires extra care and intention, as the situation with my mother is not over and will weave and wind forever more, until I’ve laid my body into my own grave at the end of my life.

This is ancestral medicine. Alchemizing the poisons distributed throughout generations, laboriously and lovingly turning them into healing waters. Never quite finishing the work, but always showing up relentlessly for what we were born to do and who we were born to be.

Living & Dying Well in a Death Avoidant Society

Just as every other thing I’ve written, this is meant to be a raw exploration of a very real human experience. I am certainly not the only person who is currently experiencing this or who will experience this in the future. End-of-life and death are just as certain as birth is. Every single one of us will face this reality at some point in life, in our unique ways. We will all get a different view of this experience, and we must share these perspectives with each other. For survival. For thriving. For rebuilding the village, remade through sacred webs of nurturing care.

We happen to live in a society that is heavily death avoidant and refuses to grow old. We want the wrinkles and physical pain to be erased through “medical advances”, and we demand that our adolescence be preserved at all costs. 

For those who do grow old, they are no longer respected as elders and given the mantle of responsibility of Elderhood. Instead they are tossed away as useless, weak, and an embarrassment to humanity (in other words, the mirror we refuse to look into as we avoid our own shadow sides). Caring for an old person is no longer a badge of honor, but instead is a desperate, lonely affair devoid of many useful resources (mainly in the form of shared human care for all involved).

I cannot change this. I cannot even fix it for my mother (she has bought into this story as much as any other old person of this generation and the many before them). 

But I know we can do something different for ourselves, and demonstrate something else to our children. That is grassroots culture change. Painstakingly moving the needle tiny points at a time, small ripples that grow larger many, many years in the future. (Accepting that we likely won’t live to see those larger ripples.)

I’ll be saving that work for another day, though. For now, I’m attempting to soothe those ragged edges through wandering in the woods, sending long rambly voice messages to friends, reading novels, and respectfully sitting with my forever teachers, Birth and Death.

PS If you haven’t given much thought to your parents’ end-of-life experience, I would highly recommend that you do. Ask them what their plans are. If they have none, help them to create some. Request that they behave like an adult so that the messy responsibility doesn’t fall fully into your lap on some unexpected day in the future. You do NOT have to care for them at your house, especially if they are abusive or are otherwise unwell for you to be around. Or you just simply don’t want to. 

But make a plan. Even if you aren’t on speaking terms with that parent or they refuse to talk about death, make a plan for yourself and how you will handle it when it shows up on your doorstep. 

Perhaps this means starting to save up money for their end-of-life care so you have the option of saying no to them coming into your house (you will be held responsible for them if they become dependent, whether you want it or not). Perhaps this means making a savings plan with your parents so they can pay for it themselves (or with your siblings). 

Whatever works for your family and relationship, make a plan and take action. Do not allow them to be death avoidant, or at the bare minimum don’t allow yourself to be death avoidant.

And when you’re done, make a plan for yourself. Start a savings account for your own care. Even if you’re young. You may never need it, but you’ll be grateful that it’s there if you do. Plan your funeral. Decide which form of body deposition you ethically feel comfortable with, and MAKE A PLAN. Get it writing. Tell your partner or trusted family member. Inform your children if they’re old enough to understand.

Be an adult in a society that fosters never-ending adolescence.

And if you’re not sure where to start, message me and I can share resources or pointers.