The Wholehearted Carer

Choosing to care wholeheartedly

Hi, I am Jennie Webster and I’ve been caring for my daughter, B, for 28 years. B has Spinocerebellar Ataxia. It’s a slowly degenerative, genetic condition that causes challenges with balance, co-ordination, speech and cognition. B is an outside wheelchair user and an inside rolator user, due to fall risks. She has had an associated learning disability since birth. B is not defined by her condition, she is creative, strong willed, loving, funny and the most resilient human I know.

I actively fought the ‘unpaid carer’ label for years. I was Mum to 3 Brilliant Girls, Wife to a Lovely Man, Friend, Daughter, Island Lover, Glasgow Suburb Dweller, Additional Support Needs Teacher, Play Advocate, Dog Walking Enthusiast, Spin Goer, Avid Reader, Creative Writer, Empath, Pluviophile, Podcast Devourer, Netflix Scrounger, Kitchen Disco Devotee with a penchant for Blethers, Wine and Baths. I was NOT an unpaid carer.

Sure, on paper I had been since B left school a decade ago. I had a Mental Health Officer assess my capacity for the role and duly turned up at Court to be granted Legal Guardianship for B’s Welfare and Finance. I had co-operated with the Local Carers Association and had a Carer Assessment. I completed and renewed the Blue Badge Application, the Cinema Card Application, the Guardianship Orders, the mounds of paperwork associated with Direct Payments, the Personal Assistant Insurance Policies, the Day Centre ‘All about Me’ booklet, the Respite ‘All about Me’ booklet, all respective medication, outing and finance permissions, as required ( Note this list is NOT exhaustive). I managed a team of carers that let me continue to work and wrote up their Time Sheets and Holiday Applications and Sick Pay Forms and liaised with a third party Pay Roll Company to ensure they were paid for the job I was in denial existed. I liaised with Dentists and Speech Therapists and Occupational Therapists and Physiotherapists and Wheelchair Technicians and WAV Engineers and Social Workers and Psychologists and Neurologists and some random guy that turned up at the door to fit bath handles and traipsed muddy boot prints up my hall stairs. Annually, I had a frantic search for bank statements and receipts to evidence our spending to the Local Authority and the Office of the Public Guardian. I resented every single second of it.

The above paragraph is what I saw unpaid caring as. It was a hideous, thankless, isolating admin role riddled with bureaucracy and endless repetition where none of the ‘professionals’ involved in the process recognised each other or the combined demand they placed on my time, energy and well-being. It was a role that had been enforced on me by fate and the government and got in the way of my ‘real life’ and the role I had chosen as Mum to B not unpaid carer. So, when we reached the point in the degeneration of B’s condition where it became apparent I needed to step down my paid employment and step up my care, I rebelled for months before burning out completely.

“Burnout is a bone-tired, soul-tired, heart-tired kind of exhaustion.” — J. Pennebaker

In the depths of my burn out I knew I had to learn not just to survive, but to thrive. If this was my one precious life and unpaid caring was going to be an increasing part of it then I had to learn how to embrace it. I had to find a way to care for B’s needs whilst not losing myself in the process. I knew my response to date to the unpaid carer role had been half-hearted at best and broken-hearted at worst.

I didn’t know what the alternative was until I happened upon Brené Brown’s blog Articles | Brené Brown (brenebrown.com) , and the following quote:

“Wholehearted living is about engaging with our lives from a place of worthiness. It means cultivating the courage, compassion and connection to wake up in the morning and think, ‘No matter what gets done and how much is left undone, I am enough.’ It’s going to bed at night thinking, ‘Yes, I am imperfect and vulnerable and sometimes afraid, but that doesn’t change the truth that I am also brave and worthy of love and belonging.”

Brené Brown; ‘The Gifts of Imperfection’

I knew there was truth for me in this. I knew I had to let go of the half-hearted and broken-hearted approach to unpaid caring and apply a whole-hearted approach.

I had to know my worthiness in the role. I had to practice courage, compassion and community. I had to find a way to get what needed done done and let go of what couldn’t be done or changed. I had to give myself permission to be imperfect, vulnerable and scared whilst cultivating being creative, authentic and brave. I had to be sincere and show commitment. and I had to recapture some fun.

I would always be ‘Mum’

But I was also a carer

And so I combined all of the above definitions and quotes and arrived at this as my way ahead:

An Unpaid Carer Mum, who is sincere and committed to providing care and affection with wholehearted values of courage, compassion and connection, that allow us both to thrive not merely survive.

This being a bit of a mouthful, I encapsulated it in ‘The Wholehearted Carer’.

Unpaid caring is usually not a lifestyle or career choice, so cultivating the freedom to choose how to do it is empowering. This blog has arisen out of what I identified as my needs moving forwards in wholehearted care and the practices I developed to meet those needs. I share claiming no authority or influence, but to connect with others on a similar journey. I couldn’t find a similar blog out there, so I started one. This blog is a living document that I hope will flex and grow as I do. Unpaid Caring is exhausting and our worlds can feel so small and our voices so inconsequential that our stories often get lost. If I am a wholehearted carer then I need to practice giving value to this role, journey and story and have the courage to share it.

The Image for this Site

The image for this site was the first thing I did and I knew exactly what I wanted to capture. It is of my youngest daughter’s hands forming a perfectly imperfect whole heart, deliberately off-centre, against a dark blue background. Hands are symbolic of care. Young hands are symbolic of a new approach. Hearts are symbolic of love. Whole hearts are symbolic of being determined and devoted, but also of owning it all; our whole narrative, every emotion, the ups and downs, the laughs and tears. Wholehearted care is human so it will often be and feel imperfect and off-centre. It’s not about forming a perfect heart, it’s about keeping and embracing a wonky, whole heart. Blue is the colour of the vastness of the sky and the sea. I grew up on an island surrounded by both. I love the idea of my wholehearted care being part of something bigger, even and especially when I feel small and alone in it. According to Wikipedia, blue is the colour of ‘serenity, stability, inspiration and wisdom’. Past caring often felt the opposite to me; it felt stressful, unstable, boring and borne out of necessity not wisdom. It’s a conscious decision to aim for the blue. I chose a dark blue cos our sofa is that colour ;-) but then I reckoned it was apt cos sometimes we care against a dark backdrop, and it’s an active choice to notice the light on the wholehearted hands.

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