My mom is dying. I’m losing her ever so slowly and I need to talk about it.
Over a year ago–Valentine’s Day 2024 to be specific–my mom broke the news to my brother and I that she had a new diagnosis. After an MRI of her brain, her neurologist no longer thought she had Parkinson’s Disease. Instead, her new diagnosis was Multiple System Atrophy or MSA. We had so many questions, questions that didn’t have answers because there’s less research with MSA than Parkinson’s.
So I grieved the tight knit Parkinson’s community we had built over 10+ years of my mom having that diagnosis. I grieved how I sort of knew what the end would look like for her, for us. I grieved the loss of all the research and foundations and support groups, because now it was all different.
Shortly after my mom’s diagnosis, I spent two weeks with her. My brother and I had gifted my dad, her primary caregiver, tickets to Indian Wells, which is a big tennis tournament near Palm Springs. Because of the flexibility of my job, I took over her caregiving and even though my dad did his best to prepare me, I wasn’t prepared. After the first night of maybe two hours of sleep, I immediately communicated with my boss what we had planned, as far as what I would work on, needed to change. My mom needed more attention and care than I anticipated, and I didn’t have the brainpower with the little sleep I had gotten to work a full day. We adjusted deadlines and I quickly got into the rhythm of being my mom’s caregiver, taking her to doctor’s appointments, physical therapy, hair cuts and grocery shopping. I didn’t realize how much my mom depended on my dad to not only get things done around the house, but for her to just exist–it was a wake up call.
And it changed everything. Meanwhile, I’m still learning a new job, working through a major knee surgery and recovery, while trying to make sense of my life, almost 800 miles away. I was still welcomed in my support group I had been attending, which I’m ever so grateful for, but my priorities immediately changed. I think our entire family’s priorities changed.
I remember distinctly being at my parent’s house, which also reminds me of my own mental health journey and all the hard work that went into healing from years of a toxic work and church environment, and cooking dinner one night. My mom comes into the kitchen with a piece of paper and starts reading the obituary she had written for herself. I didn’t know what to do. I had come across it, printed out, earlier in the day, cried in the guest room and gone through my own grief process–but my mom was so nonchalant. Like reading the things she did and accomplished and how she wanted to be remembered in the end was just a normal thing to read through. I stopped cooking and gave all my attention to her. I wanted her to know this was an important moment and didn’t want to forget it.
So this is how it’s been for the last year. I can, now, see how much of a gift my mother has left our family. Her funeral is planned. We know her final wishes, what she wants done with her body (she’s donating it to science), and the logistics of everything after she passes. As I have been working through all of this, I’ve come across the terminology, anticipatory grief. Because as the eldest daughter and someone who is committed to continuing to grow in herself, there’s always more to learn. Anticipatory grief, is defined as the feelings of grief before a loss. As I’ve begun my research into this, I’ve learned there is still so much more to learn. Mostly anticipatory grief (counseling) is offered through hospital chaplain services for family members who are about to lose a loved one. But what about those who don’t know what that timeline looks like? What about those, like me, who lose a little part of their mom (or loved one) every day, every month, but we still have a long way to go before the end? How do we work through our emotions (and let’s be real–be a space for THEM) through all of these little losses, before the big loss of them forever?
How do I grieve that my mom can barely walk on her own without the help of a walker? How do I grieve how dependent she is on others to help her with simple things that weren’t even issues two years ago? How do I grieve when she doesn’t remember things or I have to repeat myself multiple times because MSA is taking so much of her from me?
I recently found a couple podcasts episodes on anticipatory grief. I was out doing errands and decided to listen to an episode, hosted by Anderson Cooper. He was interviewing a woman who is a documentarian, who filmed a couple years of her anticipatory grief of her dad (he has dementia). The episode had me hooked as I just wandered aimlessly up and down the grocery store aisles listening to her talk about her experience. I stopped in my tracks when she mentioned she was raised Seventh-day Adventist (SDA’s), because hello????? Same.
The plans I had for the rest of the night, immediately, were thrown out the window and I rushed home to watch her documentary, Dick Johnson is Dead, on Netflix. In the documentary, she continues to come up with multiple ways of “killing” her dad. An air conditioning unit falls on him in the middle of the street. He gets into a car accident. All of this to help her come to terms with his inevitable physical end, while she deals with the end of his memory. It brought me to tears, because it was so relatable even though it felt so far from what I’m personally experiencing.
I really started crying, when they visit Loma Linda, California, which is a mecca of sorts for the Seventh-day Adventist denomination. All the while, I’m deep in my grief of this, there’s a little small voice in the back of my head reminding me, “I got you.” Whether you want to give that credit to God, a higher power or my anxiety–be my guest, but by no means have I fully come to understand this journey of grief. But I do know, as I’m constantly reminded by the beautiful and gracious people in my support groups, friends and family of the little reminders, that I’m doing the best that I can to show up for myself and my family.
This shit is heavy and I have to remind myself of that, often. It’s not easy. There isn’t a roadmap. We figure it out as we go along. I think I’m getting better at identifying when I need space to process, or when it all gets a little too much. But at the end of the day, I’m still a work in progress and doing my best to live my life to the fullest, without the guilt and shame of thinking I could do more.
So this is what it’s like to live in your mid-30s, knowing your mom is eventually going to be gone from this world. How do you grieve what’s to come while also living in as much of the present as possible? Maybe one day, I’ll write a book about it, but for now, it’s a day-by-day learning experience I don’t wish on anyone. So I hold, grief in one hand, and try to hold joy or something close to it in other, because life isn’t guaranteed and I don’t know how else to live this life that’s been given to me.
Lauren Brooks 