'A Prelude to Caregiving: Love and Torture.'

A 2015 hospitalisation was only the beginning.

2015 was one of the worst years I’ve experienced—a perfect storm of events, a test of love, and it was torture.

At the end of 2014, my work position had been 'reorg’d’ - hello ‘Garden leave’. [A limbo-state of getting paid, but without a clear path to another job].

I explored new job options and capitalised on freedom from a daily work routine. I had the blasé confidence of someone who’s ‘been there, done that’ and the self-assurance that something would turn up. It did, but not as I’d expected.

An early morning call from Mum was how it all started.

Overnight, Dad had been coughing and vomiting blood. They were in the hospital, and she was coordinating with the doctors. She tried to reassure me.

I’d forgotten that - back then, at 43 years old, they were still parenting-protecting me. Mum was trying to convince me and herself that everything would be okay.

Cold sweat, shock. Shivers. Then, action mode, sort, pack, get a train ticket.

I’d had a few of these calls but this felt different. It wasn’t a blip of atrial fibrillation or a minor stroke.

I’ll say this quickly because it’s still excruciating to think about.

When they got to the hospital in the early hours of the morning, Dad had already lost a lot of blood, and some young gung-ho doctor decided to do an endoscopic investigation with drip anaesthesia at the back of Dad’s throat via his nose, with him awake.

They ignored his fragile heart failure, atrial fibrillation and the fact he’d had small transient ischaemic attacks (TIAs are like small strokes). They seemed undeterred by the loss of blood and also the fact that he had arthritis in his neck preventing easy intubation.

Cue a couple of atrial fibrillation episodes whilst this doctor tried to look down Dad’s oesophagus, with Dad flailing and pulling the tube out. It was torture for Dad and traumatic for Mum.

Dad was later diagnosed with vascular dementia; lack of oxygen to his brain - gosh I wonder why!

A VITAL sidebar soapbox moment:

This is part of why I do what I do. As Emily Kenway said in her Amanpour interview, 'When you have the knowledge and feel the pain, it feels like a moral obligation to help and warn others about it!'

Push, champion, advocate, question and take action. I employ everything I learned throughout my career to advocate for my parents and others. ‘Never Assume‘, presume lack of communication, check, probe and protect. I was never blocked from demonstrating my concern and love.

Old school deference doesn’t wash with me, but it still resides with some older relatives. It did with my Dad, compounded because he was a doctor, too. He preferred to ‘shush’ our questions or downplay his symptoms.

For every emergency, I repeated the same information 2-3 times to different people. I ensured the highest priority issues were communicated and considered within Dad’s treatment equation.

Our ‘go-bag’ for Dad’s blue-lit journeys always had five copies of 2 info sheets: His medical diagnoses, latest scan and blood results, etc., and a list of his medications (dose, administration regimen) and allergies.

Back to February 2015.

Dad returned home somewhat stabilised - exhausted. No one sleeps in a hospital with all the machines bleeping and the regular checks of your vitals.

He was home but part of him was lost. Spikes twisted our hearts. Cut Through and Torn (Poem 2015)

But we had to keep moving forward. I interviewed for a new role and was offered the position in Belgium.

I sat with Mum, torn, crying, not knowing what to do. Take the job, don’t take the job? She encouraged me to take it. Still parenting me, trying to protect me. I needed to get on with life, and she’d manage. I could see her waver but steel herself within seconds.

I thought I could ‘do it all’. I ‘should’ be able to juggle it all. Hadn’t other women already done exactly this? Isn’t THAT what feminists say - we can do it all, have it all!? I could be that ‘Superwoman too, right!?’

This could be like the other ‘achievements’ I’d done. I would narrate a new hero story as a ‘done-good-despite’, right? Spin to positives, always, right? RIGHT?

This was how my 16th relocation started. Frenetic, in a furious, vengeful whirlwind.

On one side there was organising the movers, the packing, negotiating out of a rental contract in London, beginning to onboard to a new role, connecting with my new team, learning about the business I would be managing, finding a new home in Brussels, completing work-residence permits, meeting peers, and travelling between my parents home, while moving from London and getting situated in Brussels.

On the other side, Mum was trying to care for Dad, hitting one painful bump after another. My heart was with them, but my head was tied up with ‘shoulds’ elsewhere.

I tried to be in two places at once. At work, I needed to ‘get with the program’ and familiarise myself with the business to meet the deadline of a critical board meeting.

At home, my parents were not managing well, and while I’d researched care agencies and support, there was no way Dad was having someone ‘care for him’; he didn’t need them! ‘What exactly would they do anyway?’

I was in a medieval torture chamber. I was being torn apart in all directions, trying to do everything and doing nothing, failing entirely everywhere.

The worst part was Dad. He was having more 'episodes' and severe oedema in his legs - like ants crawling under his skin. Mum and I massaged his legs, but Dad scratched, tearing skin, making a bloody mess of the bandages and compression socks—weeping legs, wobbly with arthritis and cantankerous. Mum was exhausted.

I tortured myself for six months in total.

I remember sitting at 2 am in my home office with a blank PowerPoint slide staring at me. A flashing arrow cursor blinked hypnotically. My brain was frozen; AWOL.

I was pretzeled. No words, no board presentation. Burnt.

This was my 'wheelhouse' speciality. I had all the facts, the pieces I'd researched and each team member’s expert input. Fingers and brain were locked, frozen. Like Tin-man, I’d cried myself dry and lost signs of my heart, but now I was also losing my brain.

All the 'should's' appeared: 'I should...be able to do all this; it's just another challenge that I should knock out of the park; why can't I do this? What's happening? Why am I so stupid? Idiot! Why can't I type a simple bloody sentence..everyone expects me to get this done; the team needs me. They keep saying, ‘You’ll get it done; you always do in the end.’ Yeah, sure! But I’m failing. How can I get out of this? Can I? Yes, no - no pressure, right? RIGHT?’

I started a story thread angle for the presentation and ditched it five minutes later. I tried another....and it was 4 am—the cold light of day, and nothing on the slide. Fear bites, ice.

Cold, flushed with adrenalin I'd criticise myself for being in Belgium and not with my parents. Nothing was right.

I’d talk with my close friend at work and kept flip-flopping. My inner critic pushes and criticises. Is this motivation? I’m in a spin-cycle, the wringer. I think I can keep going, and then I’m back spinning. Everywhere and nowhere. Black-blur.

I can’t remember the date exactly, but I remember sobbing in a cafe with my lovely friend, who sensed my distress. She soundboarded with me through my wet, snotty sobs (I have an extraordinary ‘chosen family’ 🩷🩷!!).

Finally, we broke my spin cycle enough to navigate to a decision and small next steps.

I requested a 3-month medical leave of absence (Belgium offers up to 1 year to support an immediate family member).

I still tortured myself to ‘perform’ the board presentation, but the day after it I was with my parents. Relieved, reprieved - from myself.

Yes, Belgium has caregiver leave! It was small money and several admin forms, but my job had to be held for up to a year. I didn’t recognise how lucky and blessed I was at the time. I do now!

This….. was only the beginning, the start of our rollercoaster, because a few months into the leave, Dad was diagnosed with bladder cancer.

The Eldercare Rollercoaster (Poem 2019). I’ll share more of my experience when I can retell the pain.

My advice from this experience: Connect with others and break the spin cycle!

In a spin cycle crisis, we are buffeted and drowning. This is when we need empathy and inspiration the most.

‘Managing your mental load’ is essential to see the big picture and to step away from your inner critic. You can’t control your thoughts, but there are ways to free yourself from the torture.

3 Resources that helped me

1. Mindfulness

In 2015, I researched Vascular Dementia because I needed to understand Dad’s ‘episodes’, what I could expect next and any tips on handling this S**tty situation.

I've published some of the resources I found in the article: 'Dementia, the Unforgettable Impact on Caregivers.'

I found a course called 'Mindfulness for Wellbeing and Peak Performance' by Monash University (Dr Richard Chalmers and Assoc. Prof Craig Hassed). It was excellent; it was online and provided guided meditations. Perfect for a newbie who was a little sceptical and wanted to get the benefits fast!

Mindfulness is a core habit alongside journalling that keeps me grounded.

Flexing and finding 5 minutes here and there is my perfect imperfect approach in our unpredictable, constantly changing norm of caregiving.

Since 2015, I have done the course twice. Unfortunately, it doesn't run anymore.

The University of Edinburgh is delivering another online course. I did it in August 2023 to refresh my thinking. It’s called 'Selfcare and wellbeing'.

Here's an article that presents a valuable overview of mindful meditation by

DocTalk, Allan N Schwartz PhD

from his Substack Publication 'DOCTALK' Mindful Meditation. A method for reducing the effects of trauma, stress, and more.

Watch out for the following article, ‘Managing the Mental Load’, in which I share the self-compassion work and resources of Dr Kristen Neff and Dr Christian Gerber.

2 Learning & building Emotional Agility

In March 2024, I published a series of articles devoted to sharing the work of Dr Susan David, and other experts. You can see the indexed list and suggested reading order here.

A blessing. Susan David’s work on Emotional Agility. Please read this and watch the video!

3 Movement

This came later. Walking, then ‘walk-run-walk’. 20-30 minutes a day was a must-do, not a ‘nice-to-have’ or ‘aren’t I so fabulous to have a care routine’. Nope, in the deepest, darkest no-sleep days looking after Dad, this was how I vented fear and stayed sane. Drs Amelia and Emily Nagoski explain why this works in their podcast with Dr Brené Brown:

How to Complete the Stress Cycle.

Two Articles associated to this one

Resources: 'Managing the Mental Load'

Brussels: 'The Sixth and Sixteenth Relocation'

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