'Are you fluent in 'Caregiver?''

Conversational language tips from people in the know.

Welcome to all of you who recently subscribed. I'm so pleased you're here with us! I'm sending out extra doses of empathy and inspiration today to anyone who may need it, I’ve a feeling that’s all of us!

How's your week been? Mine was better than I thought it would be, given that it was Dad's birthday week.

I had no expectations about this last week. I held it lightly, trying to be compassionate with myself, and naturally gravitated towards writing the article about why pursuing happiness can make us unhappy.

Expectations can discombobulate and bewilder us if we try to adhere to an illusion in our heads. At worst, we're so focused on the illusion that we miss the value and enjoyment of the creation process. This week, I didn't want to invite grief in, but I didn't want to try and chase happiness for the sake of glossing over the day. So, I made a little space for inspiration.

I've come to accept, as Dr. Russ Harris¹ says, ‘Inner chatter is normal. Difficult emotions are normal. These emotions evolved to help us thrive and live in the world. The existence of these difficult thoughts, emotions, and stories—they’re all normal. We constantly need to make sense of the world through our energy and emotions.

I usually like to find a little time for a walk or have a session on my treadmill, as suggested by

Kaitlyn Elizabeth

in her article The Single Most Important Thing I Do for My Mental Health. But, this time, I wrote 'The Language of Being Human', an introduction to Poet Ali and his Ted Talk.

It’s a powerful presentation because it’s a dynamic, skilful conversation with the audience. Poet Ali’s choice of words and flow opens us to the language of experience and how experiences underscore our common humanity.

The key is to be open and curious to learn a new language (another person’s experience), to challenge ourselves about what we think we know, invite others to converse, and perhaps have more intentional meaningful conversations.

The article was an open question and invitation: 'Does anyone speak caregiving?' As the number of comments and thoughtful feedback on the article showed me, many of you understand and speak this language fluently.

Here are the articles I read this week offering more conversational ‘caregiver’ language tips. Each had elements of communication, listening, and connection threaded through them. The synchronicity of finding these is not lost on me.

Susan Fusco-Fazio

essay 'Sleeping with one eye open', was written on August 11, 2022. In it, Susan describes the heartbreaking hyper-vigilance of caring for her daughter Laura. Her family experienced a very different situation from mine, but I recognised the phrases, the urgency and the emergencies within this caregiver conversation.

Anne

’s article On Death and Dying: The Amazing Art of Listening shares an important point. It’s not just the words we speak. It’s the pauses and ability to listen to the speaker actively.

'If people want to tell you about their “person” and how they died, please let them. Please let them live those memories and repeat those moments. Please treat them with kindness - even if you’ve heard the story before. Especially if you’ve heard the story before.'

Listening to understand, expressing empathy and just sitting alongside someone in their pain is a gift whether you’re physically present, or not.

Listening to hear a cue for your own story or offering numerous pieces of advice as a ‘scattergun attempt’ to hero-help us (or worse ‘caresplain’ us) is like using us as a personal teleprompter. This is not empathy and compassion BUT a common, very human trap we can all fall into when we hear someone else’s pain.

Adults in pain have difficulties talking about death and grief but imagine how tough it is to explain and comfort children.

Anna De La Cruz

generously shared her thoughts and the resources she found in this article 'Helping Children Process Death and Cope with Grief While you're still trying to figure it out yourself'

I responded: 'Aching heart for you and your family, Anna. Thank you for delicately sharing this with us. I can't comment from experience. All I can say is that I feel that what you're explaining, .. is how I'd like to think I'd do this, too.'

Awkward truth-empathy.

Empathy and warmth pour out of all these articles. So, it may be jarring to read this next article that exposes the realities caregivers face.

Courtney Martin

Article: The elder and the automated system: a story of indifference, rage, and blessings all the while

My response to Courtney was

‘OUCH! I have murdered many pillows over the last years, Courtney - a direct correlation with the frustrations you've explained.

Back in 2015, I spent months and months deciphering Dad's codes for passwords in his little book and getting an Excel-like index of the different, incomings bills, etc. VERY luckily for us, this was before things got really bad.

Age UK has highlighted how the Internet has become a barrier. It may be seen as a basic need these days, but this means it's also excluding people - https://www.ageuk.org.uk/our-impact/campaigning/offline-overlooked/

Thank you for sharing your experience so that we can all be seen.

My motto these days is never to assume, copy in triplicate, save in PDF, ask for names, for specific notes to be put on the customer record, and never assume things get communicated. Unfortunately, this applies to hospital and GP practice communications AND financial organisations!! I learnt many lessons.

And then there is the toxic positivity that pervades Western culture, where it’s become popular to impose a positive spin, to gloss over the pain.

Madelleine Müller

shares her experience and opinion in this essay: “Don’t let illness define you,” they say. But this could be problematic. We are often told to not let illness define us. But is this always possible?

Four powerful lines from Madelleine, that are worth remembering.

Yet, we are often told (by able-bodied people) to not let our illness define us, but the reality is, illness does define us and shapes us.

I don’t mean to say it defines our soul, or that our bodies become a metaphor for who we are:

My body is weak, but I’m not. 

My brain is slow, but I’m not.

Everyone is well-intentioned. This is my default factory-setting assumption. However, those who are more fluent in ‘Caregiver’ get it.

It seems that the intonations, subtleties, and humanity in the key phrases of this caregiver language have become lost in society's economics. The humanity and caring parts were lost in translation, in deference to productivity and economy.

The caring became hidden behind the closed doors of households, devalued and undervalued. Now, households have changed, exploded, blended, and become costly—smaller incomes and higher outgoings. Now, everyone is being squeezed mentally and physically between a rock and a hard place—a caregiving crisis with a marginalised language.

The ‘caregiver’ language and narrative may not be part of mainstream conversations, but it IS the pain-filled human language that is affecting everyone’s mental health and wellbeing. Today, ‘caregiver’ is not an easy conversational language to grasp if we’re not having more open, curious conversations.

To facilitate more opportunities for caregiver conversations, perhaps we can first connect using easier, more comfortable areas of conversation and engagement.

'How can I feel happier or more grateful?’ Enemies of gratitude and how to cultivate a habit to feel happier and more grateful

I shared the work of Hailey and Andrew Bartholomew at 365grateful.com and how it inspired

Susan Marte

to make her own ‘Wall of Joy and Delight.’

I wanted to present an idea/enabler for connecting with family and friends and inviting more conversation.

While we need to find ways to connect our language on caregiving, change the narrative and make the conversations more mainstream, let’s not forget that we are perfectly imperfect humans who need meaningful connection, joy and gratitude.

Tough conversations can set impossible standards and expectations and are prone to fast disconnection. Perhaps starting from a place of gratitude, comfort and blessings can defuse angst, and promote curiosity. Something to reflect upon.

These articles and reflections will hopefully offer some comfort and community and inspire you to find ways to invite more conversation about caregiving. We’re all perfectly imperfect and trying.

In the UK, May 13-19th is Dementia Action Week and Mental Health Awareness Week. I hope that something in this article has offered some support and community.

Here are links to other articles that could offer more empathy and inspiration:

Dementia Resources and articles

You are Not Alone. Connecting.

Resources: 'Managing the Mental Load'

Thank you for being part of the Carer Mentor community. I appreciate you.

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Spread the word wherever you can so we can help each other. Thank you!

1. Dr Russ Harris, M.B.B.S., is a physician and psychotherapist, working in private practice in Melbourne, Australia. He graduated in medicine from the University of Newcastle-Upon-Tyne, England, in 1989, and emigrated to Australia in 1991.  As a GP, he became increasingly interested in the psychological aspects of health and wellbeing, and increasingly disenchanted with writing prescriptions. Ultimately this interest led to a career change – from medical practitioner to therapist.

Since 2005, Russ has run over 800 two-day workshops and provided ACT training for over 80,000 health professionals. He has authored four ACT textbooks. The Happiness Trap, has sold over one million copies worldwide, with translations into over 30 languages. (To download the opening chapter, click here.)

In 2015 Russ created an ACT protocol for the World Health Organisation, for use in refugee camps. The WHO have now published 3 RCTs based on this protocol, showing that it not only significantly reduces depression and PTSD but also prevents the onset of mental health disorders in those at high risk. Russ also wrote and designed a cartoon-based book for the WHO (based on ACT) called ‘Doing What Matters In Times of Stress’; on the WHO website, this is now their most commonly downloaded mental health resource.