Disrupting Internalised Misperceptions About Caregiving This Summer.

The reframe. Creating space, not frustrations, and thriving in the small moments.

Hello, dear Readers! I hope you’re well. A special welcome to our new community members!

Thank you for reading Carer Mentor: Empathy and Inspiration. You can read about why I’m publishing this website start here. Perhaps you’re wondering how my caregiving started: ‘Prelude to Caregiving Love and Torture.’

In last week’s article Caregiving Misperceptions and Realities. I shared thoughts, which had been brewing, especially during Carers Week. It’s never easy to stack these misperceptions altogether. Calling out the impact of care-splaining is hard because I recognise the goodwill behind it. Highlighting the focus on productivity to measure healthcare is the bigger heart-sink. How can this mismatch of intentions (transactional vs relational) possibly change? (Some governments were trying new approaches, but the impetus and focus for change have changed in recent years!?¹ )

It’s also tricky because every caregiver’s situation is unique. While we can easily relate to each other’s situations, I’m aware of the risk of overgeneralising. Circumstances shift, the care routine and individual approaches change, and we change as a consequence. How could I possibly or adequately represent and advocate for what every caregiver goes through when their kaleidoscope is unique and it keeps turning?

The answer? Not to try to speak to every situation all at once! I get stuck in that swirl, but all things to everyone can end up meaning nothing to no one. Especially, given the diverse spectrum of experiences and human dynamics, I’ve encountered. I’ll keep sharing my thoughts and hope they resonate.

So, I’d like to extend a special thank you to everyone who pushed the little ‘❤️’ on the article, and especially to those who commented:

Janice Walton

,

Sammie Marsalli

,

Siobhan Calthrop

,

Anna De La Cruz

, and

Geraldine Comiskey

. Your resonance was reassuring.

The fast-approaching Summer holidays bring added challenges for caregivers. Sandwich caregivers face more household chaos, panini griddled between the needs and care support responsibilities of elderly parents and children.

Eldercarers may experience disrupted schedules from agency staff vacations — calendar chaos. The hotter weather can create more health risks, uncomfortable living conditions, and make us all hot under the collar!

Those caring for immunocompromised loved ones can become more cautious with social interactions, as even brief family gatherings can lead to serious illness, covid- cautious.²

These are just a few reasons why ‘Summer ’ may not mean ‘carefree’, but as I said in the previous article, is the absence of care really the answer, or can we approach things differently?

Disrupting Internalised Misperceptions About Caregiving, this Summer.

With the increased pressure and discomfort that summer brings, I’d like to share some thoughts and resources that may help you avoid some common mind traps and alleviate frustrations.

Do you think you’ve internalised some misperceptions about caregiving? How loud and frequent is your inner critic? What expectations are you setting for yourself?

I’m inviting you to play a little reframe game and curiously reflect on your thoughts and mindset this summer. Can we compassionately review how we show up for ourselves and others this summer?

1. The reframe game.

2. Creating space, not frustrations

3. Thriving in the small moments

1. The Reframe Game

‘Should’ as a swear word: Spot the ‘Should’s’ you say each day. Gently play with your thoughts without judgment. With childlike curiosity, we’re often kinder to our souls.

Can you describe what triggered the thought, and why? Whose voice are you hearing? Is it yours or someone else’s?

Do you second-guess your choices when someone provides you with (unsolicited) advice? Is someone ‘should-ing’ you? Or can you hold your decisions firm?

Artwork by Naked Pastor (David Hayward).

David Hayward aka NakedPastor

, I appreciate your work!

Back in 2015, when my brain was in a spin cycle and Dad was just out of the hospital, I had reams of assumptions about what I should be doing or should be able to do for my parents and at work. Surely, I could do both. A 16th relocation should be easy from London to Brussels, given how many times I’ve relocated before. I’ve led several diverse teams and portfolios of brands, so I should be able to do that easily while also providing support to my parents in the UK. After all, there should be people and agencies who can help locally, right? I just need to organise things, review agencies and set up a routine… you can read more about how I relocated and pushed myself here. Suffice it to say that when human emotions and crises with unpredictable symptoms are in play, there can be no standard expectations or assumptions that fit. It was a delusion to think I could do it all. In hindsight, it was cruel to dismiss the impact of events.

I was torturing myself, trying to sustain the overachieving superwoman brand I’d been living up to until then, trapped in a ‘Fight-Flight-Freeze’ mode, out of my depth and discombobulated.

The more ‘shoulds’ there were, the bigger and nastier the spin cycle of emotions became. I was spun out of synch with my values. These days, I cringe and alarm bells go off when I hear the word ‘should’.

Can you catch yourself ‘should-ing’? Can you curiously question and probe what’s driving the thought?

3 caregiver torture tools we need to try to release ourselves from:

1. Holding ourselves to impossible standards - we are not superhuman, we need to eat, sleep, drink water, and pee too! This includes timely health checks.

2. ‘I just need more time to get my to-do list done’ - I hate to say this, but caregivers’ lists will never be done. Time is our most precious asset. More precious than money and as precious as our health, in my book.

   Prioritising and boundaries help, but we know care needs can easily take over our time and test us³. One predictable constant is that ‘The sun will rise and set.’ Somehow, we need to become okay with doing our human-best in twenty-four hours. Recalibrate our sense of time to human, away from superhuman, back to what our reality is today (not what we want/wish it could be).

3. 'Thinking we can prevent ‘xyz’ - no matter what we do, despite all the safety measures and talks you have, ‘shit happens’— like a fall on stairs. We cannot control or prevent everything. We can only do what we can. The tighter we hold things, the larger the stress, and the more inflexible we become.

   I recommend having emergency action plans that outline what to do, when to do it, and why—scenario planning. Do our best to be prepared, not rigid or perfect. To me, control and perfectionism are false measures, like productivity.

Essential caregiving skills that we often undervalue:

• Creative pragmatism - we find some brilliant creative solutions because we have to, and we make do with what we have

• A caregiver’s radar - the ability to anticipate the needs of our loved ones and preempt issues. We become highly sensitive to change and, sometimes, can predict what will happen given our knowledge and experience of ‘the system’.

• Agility - every caregiver I know has had to learn to adapt to change, pivot quickly in crisis, and flex. Partly due to the unpredictability of deteriorating health conditions, and partly due to systemic failures.

• Influencing without authority - we may not have the medical terms or all the information, and we may feel at a disadvantage; yet, we still find ways to advocate for our needs and those of our loved ones. It’s a complicated fine line we tread, and stressful, but we do it, often because we have no other choice.

• What other essential skills can you think of? Affirmations of our work and emotional labour are important reminders and disrupters of how we perceive ourselves.

2. Creating space, not frustrations

Between stimulus and response, there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.

- Viktor E. Frankl

I was blessed to have discovered Mindfulness, the work of Dr Brené Brown and Viktor Frankl’s book ‘Man’s Search for Meaning’⁴ in 2015. The nerdy, curious researcher in me sought resources to help myself.

I’m sure we can all point to those moments where there is no space between the stimulus and our response. Emotions get the better of us. Default responses and old stories get replayed.'

If you have siblings, family visits, or events planned this summer, you may be anxious about interactions, unsolicited advice, or your potential reactions.

The one big question I had for a long time was ‘How can I possibly catch myself, create space and choose a response?’ Often I couldn’t.

But I learnt to take a deep breath in high-stress moments. I don’t do this well, but it’s an intention. I could feel my nails squeeze into my palm as I clenched my fist hard, and I tensed up. I had to force myself to breathe, try hard NOT to say anything. Fix my mouth shut.

“Take a breath. Think.” Disrupt any default reactions. If necessary, make an excuse and leave the room.

Mindfulness practices, combined with deep breathing exercises, have been my go-to tools since 2015. To train myself to choose my response.

The Neuroscience of Breath: How to Use Breathing to Control Emotions

Discover the powerful connection between breathing and emotional control through neuroscience. This video explains how specific breathing techniques influence your brain chemistry, affect stress levels, and help manage emotions. Learn three evidence-based breathing methods that can enhance your emotional regulation, improve cognitive function, and boost stress resilience.

Dr Tracey Marks shares three evidence based breathing techniques (Timestamp 4.20)

• Box/Square Breathing (Inhale 4 seconds, Exhale 4 seconds, Hold 4 seconds

• 4-7-8 Breathing (Inhale for four counts, hold for seven, and exhale for eight)

• Resonance Breathing (5 seconds on the inhale and 5 seconds on the exhale)

Resonance breathing helps regulate our emotional responses long term. I’ve had that reinforced to me during my Nuffield health check recently. Being able to train our bodies through breathwork, helps us manage the cortisol, stress spikes.

3. Thriving in the small moments IS possible.

It’s very easy to get stuck in the treadmill motions of a care routine. Depending on how stable your loved one’s health is, routine can offer some comfort and predictability. Our world and everyday lives can feel smaller. Sometimes we go through the motions because we’re exhausted.

So, ‘thriving’ may not be a word you’d easily associate with caregiving. But, it is possible.

I’m not talking about the crisis moments or the early days of caregiving, but when something of a routine emerges, we can have enough stability to breathe more life into each moment.

Reframing away from my old work reference points, to create more mindful space I’ve found it easier to employ each of my senses to be in-the-moment, appreciate right now and I surprise myself. The mental snapshot and pause can reground me, stopping the ‘to-do list scrolling’ or planning, that is the constant background noise in my head.

Thriving may not be the right word for you. Perhaps ‘possibility’ or ‘mindful pause’ feels more apt?

As

Jeanette Yates

, who cared for her mother since she was eight, said in one of her interviews

Mindfulness is not about trying to carve out a specific time to meditate on the floor or in a comfy space. Within whatever routine you have, like brushing your teeth mindfully notice your actions, your breath, use your senses to feel in the moment what you’re experiencing. Mindfulness is Non-judgmental awareness.

For me, it’s these smaller moments of our everyday that enable me to thrive. After the intense instability caring for Dad, with all the ambulance trips to ER, I savour the predictable calm and seemingly boring, small moments.

These are economics of time and effort that make the most sense to me now —small moments that bring me the most comfort⁵ and joy. That is the surprise.

Do you think you’ve internalised some misperceptions about caregiving?

What one thing can you try to disrupt, to help yourself this summer?

Let me know how it goes in a couple of months!

Please ‘❤️’ LIKE the article

1. One example of changing economic indicators to community wellbeing measures: New Zealand – Implementing the Wellbeing Budget (A Case Study) and the Wellbeing Budget (30 May 2019). You may be interested to learn about Wellbeing Economy Alliance (WEAll). A collaboration of changemakers working together to transform the economic system.

2. Please remember, anyone can be asymptomatic and transfer COVID to others, especially if someone is immunocompromised. A short family reunion last summer resulted in Mum’s hospitalisation with Covid and pneumonia, made doubly difficult since I had it too. A few hours led to a challenging month.

3. Please try to catch yourself from falling into a vicious cycle of criticising yourself for not being able to set priorities and boundaries. Piling on more expectations becomes a catch-22.

4. You’ll find my Top Ten Annual ReReads here

5. Some of these I’ve shared via the ComfortZone section of Carer Mentor: music, podcasts, films, YouTube videos.