“No darkness lasts forever. And even there, there are stars.” ~Ursula K. Le Guin (the Farthest Shore)
Everyone with a close relationship with their mother has felt it at some time or other or expects to feel it in the future. That dreaded moment when you will have to say goodbye to them. For some of us, it happens early in life, through illness, a parting of the ways, or other transitions; for me, it began in my mid-fifties, and even though I had plenty of time to ponder it, I wasn’t prepared.
I was always very close to my mother, so we’d had many conversations about her aging, discussing everything from living wills to her end-of-life wishes, but I still wasn’t prepared to handle the series of strokes and resulting dementia that started some two years ago.
Within the first year of her first stroke, we visited emergency rooms some ten times to manage the small hemorrhagic strokes she had and the residual falls, seizures, and infections that resulted. One day, we were “normal,” talking on the phone almost every day and taking walks around our neighborhood on the Upper West Side of Manhattan, and the next, our lives were totally different.
We Prepared for Aging, But Not for Grieving
I realize in hindsight that no amount of reasoned discussion about healthcare proxies and funeral preparations prepares you to take on the reality of a parent’s (or other loved one’s) health crisis.
In fact, when I think about the rational way we discussed all these details, I’m struck by the fact that we never (not once) talked about how we would feel. How would I deal with her illness or death emotionally? We didn’t talk about how my life would change. We left out so much of “life” in these practical discussions.
Of course, I know why we didn’t; we didn’t want to face it, and talking about my emotional turmoil during her end-of-life journey would have felt too real and been too difficult. So I went through those emotions without her. Her dementia changed her memory, her perspective, and her understanding, so she now has limited capacity to know or sense how each stroke might be affecting me.
Before she transitioned into middle-stage dementia, there would be periods of focus and brightness where my mom would be aware of her condition and its effect on me. As was her kind, loving nature, she pushed through and comforted me in much the same way she had always done.
It amazed me when these periods of connection came through. Even while dealing with such a pervasive rush of cognitive deterioration, she still “mothered” me. She showed the depth of her love and understanding. It was remarkable to experience.
The Zig-Zag Pattern of Grief
But then this on-again, off-again awareness had its effect on my emotions too. There were so many emotions all at once, and the zig-zag nature of these feelings was exhausting. Good days, bad days, numb days, brighter days. Who knew what was coming next as I managed the day-to-day logistics of dealing with her health decline: hospitalizations, rehab stays, home care, equipment requests, financial issues and, finally, new living arrangements?
For the first time, I journeyed through a pervasive struggle without my best friend to lean on and with the heavy emotional burden of facing life without her.
I’d come home from the hospital in those early days and just cry my eyes out. My husband and daughter were ready to console me, but they didn’t know how to deal with my intense emotional state, and they were grieving too. I cried until I was numb, then cried some more until I was all cried out.
But I Made It Through
There were so many emotions all at once: sadness, fear, frustration, anger, denial. No neat Kubler Ross sequence for me; I felt all the emotions simultaneously and throughout the day. The disorienting zig-zag pattern of grief meant that some days, I felt like I was on top of things and handling my emotions, and other days I was an emotional wreck.
Through it all, I learned how to “Adult” with a capital “A.” I call it “super adulting.” And it all came on so suddenly. It was like a raging firestorm swept me up, burnt through me, and then left me by the side of the road as a charcoal shell of my former self. Still breathing but burning with rage and sadness.
But I made it through.
I was also exhausted from the caregiving. Already a caregiver to my partner (who has a disability) and my college-age daughter, who was just entering college when my mom’s health crisis began, the lack of sleep, trips to the hospital, and then taking care of my mom at home (after a full day’s work in the office) was unbearable at times.
But I made it through.
Through almost two years of this super adulting, I found an assisted living facility that could handle my mom’s medical needs (and provide some socialization), but it came at a hefty price. Seeing the monthly bills causes its own stress. But it was the best place for her, a place that takes loving care of her during the day when I can’t and coordinates her healthcare. It helps with the logistics, but I still have anxiety about her advancing dementia.
But I’m making it through.
Now that I have the time and space to regroup and journey through my own transition, I see that making it through every hurdle, while excruciating at times, was a journey I had to take. It was a journey that only I could take, and alone because it was a journey to a new stage of adulthood.
I learned without a doubt that I could step into leadership, and I offer these insights to those of you who are going through a similar grieving journey with a loved one. May it comfort you to know that some or all of these benefits might await you on the other side of your grief journey.
You Will Lead
Situations will push you to grow and own your voice because you must do it for your loved one. You will have to move through indecision to take action to move toward progress. You will become a leader. Once you have made these decisions, you will feel a sense of empowerment because you took action and moved through the world with agency. You can lead.
You Will Feel Grateful
You will encounter incredibly loving, helpful people along your grief journey. They will hold your hand (literally or figuratively), they will make things a bit easier, and they will feel sad, angry, or fearful alongside you. Even when you feel alone, you will not be alone. You will feel gratitude as new people come into your life and offer loving kindness to you along the way.
You Will Know Yourself Better
You will learn that even though you can’t control what is happening, you determine how you will respond to it. You will figure out how you feel and what you want (and don’t want). You will make choices and be faced with consequences and learn from those scenarios. You will know yourself better, and you better believe that your loved one would be proud of your new insight.
You Will Learn to Connect on Your Own Terms
Sometimes you will seek out community and connection, and other times you will want solace and singular mindfulness to facilitate healing. Sometimes you will alternate between the two, taking from community what you need and being silent when needed. You will learn to set boundaries to protect your time and emotional resources. You will connect on your own terms.
There are still days when I feel very alone, when I miss hearing my mom’s voice, and the fear rises up as I think about losing her completely. On those days, I try to sit with those feelings, build a tolerance for them, and not judge myself as I stumble around the day living in my emotionally fragile state.
Then there are days when I feel my mom as a living part of me, like an energized golden thread woven into my life’s fabric. And when I breathe in and out, we breathe together. Some days my mom feels intertwined with my very essence and forever present in the warm, inviting heart she helped to create. Those are my best days. May you also know them as you zig and zag through your grief journey.
If you are grieving over a loved one’s struggle or passing, I hope you feel a kinship to the ideas and sense of hope I have laid out here today. My wish for you: Allow yourself the freedom to feel however you feel but try to hold space for the idea that you will make it through. Make space for the possibility of a positive transition. I hope that over time you will come to some peace about these changes.
Perhaps you will feel as I do, that your loved one now resides inside you. That they have a new home. And when you breathe in and out, they breathe with you, forever present in your warm and inviting heart.
About Jill Hodge
Jill Hodge is the writer and host of the inspirational personal growth podcast Let the Verse Flow. She created the podcast in response to the grief she felt during her mother’s transition through dementia. Through storytelling, spoken word poetry, affirmation meditations, and music, Jill hopes to inspire creativity and self-care, especially for caregivers. Explore the podcast, blog articles, and her companion newsletter, the Me-Time Mixtape, to get tips and resources for your creative self-care.
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