..and breathe
And when I notice it, I remind myself to exhale, there is no more anticipation of what is the next loss, we are here now, death has come and with it, so has grief.
Martha and I having been living with alzheimers for a long time, Martha’s diagnosis was formalised in 2009 but she had been experiencing symptoms prior to that. Alzheimers is a slow and painful losing of self, not just for the person who is diagnosed but for those around them. In 2009 I had not known even a slither of what was to come, the good times, the bad times, the times that will break my heart forever, and no one could’ve prepared me for the utter devastation a terminal illness can do to you.
I know that there are many ways people die slowly, cancer, mental health, and other conditions that take from us, the slowness in which death approaches is cruel, and in some moments the slow is also a kindness, giving us time to get used to the idea that the ones we love won’t be here forever. It is easy for me to oscillate between cruelness and kindness.
Recently in my grief I have been talking about this a lot, how death moved at a snail pace for us, how we experienced a myriad of little deaths along the way to that final last breathe. Today I think of my own experience, as if holding my breath waiting for the moment that I could finally exhale. And now, 15 years on from diagnosis, and two deaths in, I can finally breathe in my grief.
Alzheimers has been filled with grief, it has been filled with last moments, last words, last steps. Thinking about when my Dad passed away it was all so sudden, there was barely a moment to spare, one night I was talking to him on the phone and the next day that would never happen again. The suddenness of his death was overwhelming, and unlike the holding of breath I’ve been doing with Martha, it was as if all of the air had been taken from my body in a 6am phone call. The grief came naturally after that, not being able to check in with him, not going home at Christmas to see him, it was all gone with that one phone call. And while there wasn’t a lot of space to grieve as I transformed from daughter to caregiver, the fullness of the grief experience was still present in our lives.
Now, as I reflect on my relationship with grief I have spent the last 11 years, and then more specifically the last 2 years, and then into the minutiae, the last 8 days of Martha’s life in anticipatory grief. And in that anticipatory grief of losing someone ever so slowly and subtly, it felt somewhat inappropriate to allow myself the full experience of grief, I recognise now that I held myself back from being able to grieve her, even though the losses were great.
I have a photo of Martha coming into my bedroom one morning, that day, 13th December 2020 would be the very last day she got herself out of bed in the morning. I have a photo of Martha from the first time I had to feed her, it was my 30th birthday and we had never encountered that before, I held a fork to her mouth silently begging her to eat, and in that moment I had no idea of what was to come with her relationship with food. I have videos of her singing and laughing, but as the years ticked by it became inevitable that one day, long before she passed, that would leave us. And yet, somehow, it felt wildly inappropriate to grieve those losses - because she wasn’t gone, how lucky I was to still have moments with her. I look back now and wonder what would it have been like to give myself a moment to grieve those losses, to mourn them with her, to sit with the grief in its fullness. But that is a fruitless task, the wonderings, the what ifs, it is now my duty as a daughter of alzheimers, to grieve my Mother, in the big moments and the small. My hope is that for anyone reading this, in the parts that resonate, that you allow the grief to sit with you. You allow the grief to remind you of how big your love is in those everyday moments.
Every day since her passing I catch myself holding my breathe, letting it get stuck in my throat, pursed lips with no room to escape. And when I notice it, I remind myself to exhale, there is no more anticipation of what is to come, what else I may lose, we are here now, death has come and with it, so has the grief.
The loneliness of Grief
..Grief is expansive and so is loneliness, those two things crashing together are reminiscent to me of the Pacific ocean and Tasman sea meeting at Te Rerenga Wairua…
Grief is a strange experience, no amount of googling (you’ll hear me say this a lot!) will give you the exact answer you are looking for, grief is experience based and individual to each situation, and yet we experience it as a collective. The grief I currently feel is so different from the grief I experienced 11 years ago when my Dad passed away, and yet there are so many similarities. If you think about it too much it’ll do your head in.
For the first time in my grief I finally have the ability to describe the loneliness of grief, this current form of loneliness anyway, grief is expansive and so is loneliness, those two things crashing together are reminiscent to me of the Pacific ocean and Tasman sea meeting at Te Rerenga Wairua. This loneliness has no remedy to it, it just exists as something I have to learn to live with, no amount of spending time with others, spending time with myself, picking up hobbies or doing the things is going to soothe this loneliness. This loneliness will only be remedied by spending time with the person who has passed away, and that is not a reality I can access.
It is a loneliness that is persistent, and I often find myself searching through the recesses of my mind to find the answer to my loneliness, or becoming easily frustrated by the loneliness, moments of “but I’m with (insert person’s name), why am I feeling so lonely right now,” and then as if I am having the thought for the very first time, every single time, I remember that my loneliness is the missing of my beautiful Māmā and that no other person will ever fill this gap. That then begins another cycle of searching, as if searching through a basket with no bottom I try to find the thing that’ll make me feel close to her, is it this song, or this memory, is it this book, or this photo? In an attempt to ease the pain of my loneliness I pull everything out of the basket, I dump as much of it’s contents onto the floor of my mind, and whilst momentarily I feel the loneliness subside, the task proves to be fruitless. Once I have pulled everything out, and endure the slow task of putting it all back in again, I am left once more with the feeling of loneliness that cannot be soothed. I sit with my missing of her, I hold onto the photo, the t-shirt, the songs on repeat, but what I know now is that I will always live with this loneliness and at some point along the way I know that I won’t need to pull everything out of the basket, I won’t need to google “grief and loneliness,” as my journey (and yours) with grief continues I know that I will make peace with this lonely part, it will remind me of how I loved her and the love she had for me. I know, in time that will all come, but for now I will continue to google, and search, and hope to remedy my loneliness until the discomfort of it eases.
