Personal Reflection & Resources: 'Life grows around grief'
No clichés. There is no neat sequence. 'Just' messy, heartfelt humanity.
Grief is personal, unique and unpredictable. There are no clichés here. No should-do’s, stiff upper lips (UGGHHH)—no 'brighter sides’ or toxic positivity people peddle when THEY feel uncomfortable. There is no right and no wrong in how you feel when you’re human and you’re grieving.
I believe we each suffer grief differently because each human is a unique individual. So, the dynamics, the loss and the experience of grief are just as singular as we are.
The video below was comforting because there’s no rigid definition, expectation or prescribed standard.
I’ve listened to and read concepts from many experts and thought leaders. However, this simple video and animation feels right, especially now, four years after Dad’s passing.
You see, grief is not ‘just’ still here. It can invade my every day when I least expect it. It comes at me like a tsunami wave, pulling me in an all-consuming undercurrent, washing me out and leaving me with a discombobulated hangover of emotions.
We pivoted so hard from Dad’s passing to Mum’s cancer treatment in 2020 that there was no time to process anything. We’re finally beyond surgeries, chemo & radiotherapy and have a calmer routine.
Our heavenly moments are when there are no issues or drama, a few quiet, peaceful days without medical check-ups. These carer days are polar opposite to the ones we had tag-teaming the care for Dad.
The increased predictability also means I’ve felt uncontrollable swells of emotion from inside me that seem to come out of nowhere. They burst out at the weirdest, most inconvenient times, triggered by what may seem innocuous and insignificant.
In 2020, I had many flash-back physical cringe moments, after-effects of the falls Dad had on the stairs. Or my adrenalin would spike at a loud bang or thump. A programmed response to the danger of finding Dad lying on the floor. I had a honed conditioned state as a long-term caregiver, primed to ready-set-go. It’s why I went to bed dressed in gym gear, primed for Dad’s dark o’clock shout for help.
I researched Caregiver PTSD alongside grief. It’s a phenomenon resulting from extended periods of hyper-vigilance, anticipating needs, and being constantly primed to respond to crises. (Click on the image for the reference)
Excerpts from this systematic review paper's Discussion & Conclusion sections (a review of other published papers).
‘having a higher level of family cohesiveness was protective against PTSD symptomatology [38], highlighting perceptions of friendliness and supportiveness between members of the family as protective. More widely, the importance of family and social support has been highlighted by many other studies.’ [19,22,38,39,43,50,54,62].
‘we found that using a positive coping style [44], having higher levels of mindfulness [44,51], and having feelings of hope [35] were all associated with a reduction in PTSD symptoms. Indeed, teaching mindfulness-based stress management, while reducing distress, could bolster psychological and behavioral resilience [76].’
This is why Self-Compassion, mindfulness, patience and figuring out what works for you are essential in caring for your loved one and, beyond their passing, in grief.
The two articles, Prelude to Caregiving and Managing the Mental Load, offer context to this article. To me, grief is still an indefinable, shape-shifting puzzle.
We are not good at NOT mastering something and NOT being in control or NOT controlling ourselves. The reality and truth is that if we have loved, we will feel the loss, and that loss is love hurting, something we cannot escape or control.
We’re not automatons; we’re not AI. We are perfectly imperfect humans who will be grieving after our loved ones have gone. We’ll also be our own harsh critics, guilting and insulting what we did in hindsight.
Now, I talk about Dad more naturally than before …sometimes. I swiftly change subjects or leave the room in conversations about emergencies or the hospital. There are still some traumatic episodes that I can’t discuss without crying - anger, rage, frustration, and some sadness. Words fail for some moments.
There are bittersweet, pain-filled moments that I’m going through as I curate this new version of the website. There is some therapeutic relief in the bite-sized personal reflections and reacquainting myself with all my stored resources.
Grief: It’s not something you have to ‘get over’
Try to watch the full 8 minutes 36 seconds
Below is a Trimmed down version video I have shared with my friends. I always caveat my message:
‘Please feel free to ignore this, or save it somewhere for when you’re ready’
‘I’m here. No words or nonsensical clichés. I know you’re hurting and I’m here whenever, if ever you need me. We can just text, or I can just listen. You can be sad, angry (yes that’s ok too) - there’s no timetable or right thing. You do you. I’m here.’
It’s worth watching the longer video above, to understand when grief can become a problem.
You may see ‘complex grief’ in a parent. For example, when one partner has passed and all the finances, tax and paperwork was done by that person and the grieving partner is at a loss of what and how to manage everyday administrative tasks on top of all the grief of being alone in the house. Imagine a tech-naive parent trying to pay bills and figure out all those passwords!
If you have parents who are ‘getting older’ I’d recommend trying to open the uncomfortable, awkward conversations now.
Gently investigating the status of important documents and information. Approach it with curiosity. Let them lead, at their pace.
You’ll be relieved to be even slightly aware of where things are if a crisis happens. Facts suddenly bubble up, ‘that one time he said..’. A crisis will inevitably happen, a medical incident or crisis because we’re not immortal!
Starting the conversation and holding yourself in discomfort for the sake of, and in service to someone else’s wishes, IS the brave, courageous act, in my humble opinion. It’s not about having every piece of paper nailed down, filed and cross checked.
Take it from me, no matter what you do, you will NEVER be 100% prepared. Life is not that neat and tidy when it comes to being human!
We cannot control everything. It’s just not possible to make everything 100% safe, and protected. You can’t wrap your parents up cotton wool, just like they couldn’t do that to you as a kid.
The questions I used to force on myself:
‘Are you doing or saying this to make YOU feel comfortable and be okay?’
Or I’d think, ‘Is this what they want?’
Every relationship has it’s idiosyncrasies, and dementia and illness complicates things. Open curious heartfelt discussions, dignity, reassurance and respect, were my aspirational bywords - for myself and them.
When you’re in the moment managing through a death, and the administration and orchestrating everything, you’ll find a way to navigate it all. Trust yourself. THAT’s the reality. Whatever was discussed or planned will be done as best as possible, you can’t do more.
We’re not perfect and that’s what makes us all so perfectly human! And part of our common humanity is our capacity to love and grieve because of that love. (see Dr Kristin Neff’s work)
Knowing that, it makes more sense to permit any loved one the space to draw as much reassurance as possible; to speak their mind and everything they want to share, so that they feel heard and understood.
The unfortunate reality is that, you’ll understand their wishes, but you’ll be the one figuring out how to make it all happen. So, the only thing you can promise is to do your best.
Don’t forget - turn the tables on yourself. Start thinking of your own plans, administration and important documents, that you need to share with your executor or family!
Dad had a plethora of co morbid, illnesses all of my adult life. He had a quintuple heart bypass the same year I did my GCSEs. Every holiday, before school restarted, he walked me through his instructions about his Will and service. I hated it but over the years, I learnt to just listen, echo and nod.
Despite Dad’s exemplary organisation; ‘THE Grey Folder’, and my nerdy excel, project management and admin skills it still took me over a year to finalise his ‘estate’. And Dad to Mum was apparently the ‘easiest’ type of probate (according to our solicitors).
The speed of administration is out of your control. You’re beholden to organisations, insurance companies, banks and when all the notifications and papers are with the legal team, you’re then beholden to Probate being granted. (United Kingdom experience)
So, yes be organised, do your best to designate a folder or drawer with all the important information that you may need. Even research things yourself to get primed. Be kind to yourself and be mindful of your expectations as an executor of your parents estate, or in preparing your own documents for your family.
In the end, 80% of The Grey folder wasn’t needed. I had Dad’s wishes imprinted in my mind, but also in the process of doing there were new facts, issues, or points that changed things. These are the the things no one can anticipate or plan for.
And so what?..
One morning when Dad’s eyes were semi closed, sitting at the breakfast table, head nodding, I asked my usual question of whether he was in pain or okay. He mumbled that he was fine.
Sitting close, watching over him I put my hand over his gnarled arthritic one. I took a deep breath and simply said, ’if you ever feel you can’t go on and you’re too tired, Da, it’s okay, we’ll be fine and I’ll look after Mum.’
Quiet. Tennis balls in throat, nails in palm. I waited, and waited. Softly, ‘Da, did you hear, me? We’ll be okay.’
‘I know, I know yes, okay’. It wasn’t exactly the response I was looking for but there’s no romantic glossing of reality. Dad and I had several versions of this exchange over the next two or three months. Sometimes he wanted to remind me of something, or tell me things again.
Four years on, it’s the ‘breakfast table moment’ that stays with me. The tipping-point moment of validation that things would be okay. He knew it, I knew it. A reassurance for both of us.
A comfort to me now…while life grows around my grief.
If you’re looking for more reflections and resources.
Personal Reflection: 'Grief, Love persevering' The painful threads within us.
Resource: Megan Devine's 'How do you help a grieving friend?' Refuge in Grief Website & Book
Poem: 'Echoes in the Walls' Reconciling with grief over the festive period.
This podcast shakes up our understanding of grief and offers us some ways we can reclaim some agency; some tips to help ourselves.
The articles below share personal experiences of Grief. They are powerful, human experiences, AND connects us in painful, resonant empathy. Grief is as unique as our fingerprint.
‘Women are designed to Howl if we're not howling are we even healing?’ By Danusia Malina-DerbenPublication: Parents Who Think.
‘Give Grief a Seat’. Making space for our pain. By Laurita Gorman | MSW SEP Publication: Wildly Unraveled.
'Be Present and Dance with Grief. On moving forward when everything falls apart'. By Bonnie Tai . Publication: 'Let's Just Be'
‘Meet Your Grief With Self-Compassion.’ How I've used self-compassion while grieving, and how you can too. Amber Groomes,Ph.D. I appreciate the way Amber has shared statements that we can relate to. We can more easily self-identify and feel connected in our grief and our need for self-compassion. She’s made the 3 components of Self-compassion (Mindfulness, Self Kindness and Common Humanity) more relatable and meaningful. Thank you, Amber.
Mariah Friend Resources for grief:
Does the metaphor in the video resonate for you? What has helped you? Please leave a comment if you feel comfortable doing so.
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Caregiver PTSD is real. I still feel the same clench in my chest whenever my phone rings early in the morning or late at night. The only time that used to happen was when something was going wrong with my mom. Now I'm riding the grief waves of losing my best friend in January. I carry the absence of her and my mom with me, but I still manage to carry greater joy.
Victoria, I love your phrase 'Human-ing hard.' It’s exactly what I'm navigating as the tide of active caregiving recedes. I'm finding so much radical gratitude in the capacity to just feel the weight of things again—a concept I've been calling Melanchosophy. It’s that 'wisdom of sadness' that proves we are finally whole enough to hurt. Truly appreciate the space you've built for us to process this.