"I Can’t Do This Any More" by Cooky Howitt

Summer Season of "Letter From A Caregiver"

Hello! If you’re new to Carer Mentor, welcome! Thank you for being here!

I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why? I created Carer Mentor to offer heartfelt empathy for Caregivers. It’s a hub of practical tools, resources, and insights. A community support network for all of us human-ing hard. ❤️ Start exploring here.

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Letters from a Caregiver.

“Letters from a Caregiver” is a weekly article where a caregiver offers their wisdom, compassion, and hope to their younger self. No one knows us as well as we know ourselves, and even then, we may second-guess ourselves. The choices, challenges and tragedies we’ve faced have forged us in more ways than anyone can understand; in ways we’re still trying to decipher!

Since September 2025, thirty-two letters have been posted over three seasons.

This Summer Season so far

1. “Caregiving is a continuous evolution of my love, trust and courage.” by Victoria

2. “The Word I Didn’t Know I Was” by Marina Ortiz Caiuby

3. “The Suitcase by the Door” By Vicki Tull

4. “You Thought You Had to Choose” by Maria Messer

Today’s ‘Letter from a Caregiver’ is by Cooky Howitt

When I connected with Cooky earlier this year, I was blown away by her extreme parenting. I think I felt a deep connection to the long, fraught rollercoaster we had caring for my Dad. When there was no sleep, and we were walking on eggshells, primed to call an ambulance.

I highly recommend reading Cooky’s articles and, in particular, these two: Welcome to Extreme Parenting and Highly extreme parenting PDA and Norovirus: a delightful partnership.

Both give us a better understanding of Cooky’s caregiving. I’ve learnt a lot through reading Cooky’s articles. Her writing is funny and light and at the same time raises awareness about the realities of caring for a child, now a young woman who has Special Education Needs and Disabilities (SEND).

For example, I wasn’t aware of PDA (TBH I only know the acronym as ‘public displays of affection’!). Cooky shared that PDA, Pathological Demand Avoidance, is

“a profile of autism in which certain everyday demands, normal or mildly irritating to you and me, make the recipient literally panic. They go into ‘fight, flight or freeze’ mode and respond accordingly. To me, cleaning my teeth is a routine annoyance: to Olivia, it’s a life-or-death demand which she has to fight with every fibre of her being.”

A very different PDA from the one I knew! It opened my mind and cinched my heart when I thought of what this meant to caregiving for Olivia.

Author’s Bio: Cooky Howitt lives in Exeter, UK, and is a mum of two young adults including Olivia, 19, who has complex special needs. Cooky started writing Extreme Parenting last September in response to a health crisis of Olivia’s, which knocked their world completely off its axis. She’s continued writing it as Olivia has recovered, and now it’s mostly a diary of joy, musings, and everyday mild peril. When not doing extreme parenting, Cooky is a career coach for her company Flourish Career Coaching, a vocation that she absolutely loves.

“I am eternally grateful to Victoria for finding me here on Substack, and bringing me into this amazing and supportive community of fellow parent carers. She works tirelessly to bring carers together, and her website ‘Carer Mentor: Empathy and Inspiration’ is full of useful tools, resources and general wisdom! One of my points below is how lonely I felt while Olivia was ill, I wish I’d known about this community then, although I probably wouldn’t have had time to connect with it.” - Cooky Howitt.

My sister gave me this last year to remind me that it’s what I usually practice. [On a black kitchen countertop is a white mug with a blue pattern. Within that pattern are the words “Relentless Optimism” in white]

Dear Cooky of September 2024,

I’m writing this to you from 2026 but I’m never going to send it because actually, you don’t want to know what’s going to happen to you over the next year. If you DID know, you probably wouldn’t believe me, it’s so crazy. And anyway, it is the not knowing, the hope, your natural optimism, that will keep you going. Ignorance is bliss in this case my friend.

The only thing that I DO want you to know is that you will get through it. And you should be incredibly proud of how you do it. Hang onto those two things as hard as you can.

Your optimistic world view is about to be smashed off its plinth.

It’s only just started kicking off this September of 2024. And it’s so cruel because you’ve been waiting for this moment for 20 years. You’ve finally moved back to your home county of Devon, after pining for it since your children were born. But your eldest George is starting at Bath University this month, so it is a good time for him.

Your youngest, 18yo Olivia, is trickier. She has Down’s Syndrome, autism (PDA profile) and ADHD. She is non-verbal and still in nappies. She had a wonderful school in Kent, amazing carers and a great gang of friends. You knew that moving her would be hard, but actually you are about to discover that will be the least of your worries.

At the moment, you have just landed in Devon, and it’s lovely to be back. It’s not ideal, you are renting temporarily and the house is old, damp and mouse-infested. It’s at the bottom of a deep dark valley. There’s going to be a lot of rain over the next 6 months, which the cobb walls will soak up like a sponge.

Already after only a month you can see that Olivia is not happy, and you’re pretty sure there’s something physically wrong with her. It appears to be bowel related (she is gluten intolerant) so that’s your best guess, but she can’t tell you and has no idea herself how she feels so it’s a guessing game. Or maybe she’s just upset by the move?

Cooky, you’re wrong on all counts! It’s gynaecological. You will finally realise this in December. The medical establishment will take a further 6 months to be convinced.

There is no new school for Olivia arranged for this September, they are all full. You have found an independent college that looks perfect and amazingly does have a space, but in the end Olivia won’t start there until next January as the LA¹ will deliberately drag their heels on the funding. At the moment you are full of false hope that it’s happening imminently.

I’m not going to spell out the day-to-day misery as Olivia’s illness develops, it’s all recorded in my Extreme Parenting Substack, but here is your year at a glance, so brace yourself my love:

Cooky, there will be three main challenges to your natural optimism. You haven’t got over any of them yet, and may need some help in doing so.

1. Losing faith in the medical system

The gut-punching main thing is that before this experience, you assume - like most other people in the 21^st century in a wealthy western country - that there is a safety net for anyone with an acute health problem. Someone to catch you. The NHS is under pressure, sure, but it’s still there, free for everyone. This turns out not to the be the case for a person with severe special needs. Every time you visit the hospital, it will be like they have never seen anyone like Olivia before, they won’t know what to do with her, or how to treat her, so they basically won’t treat her. They will sedate her, try her on the pill, then suggest that it could be mood related, PMDD², maybe somehow linked to her learning disability?

She won’t get a scan until July 2025 (7 months after you first alert the gynae department to an urgent problem). She wouldn’t have got the scan at all if you hadn’t pushed and pushed and pushed. Just before they take her down to theatre, they will say ‘we’re not expecting to find anything’.

They will find something. And how. She will have been living with an infected fallopian tube for at least a year. Untreated, it will have caused other complications - organs moving including a twisted ovary, huge adhesions forming affecting her bowel.

She will take over 2 months to recover, during which time the pain will continue, and you will have no idea if the surgery has worked fully or not.

2. Exhaustion

Cooky, you are not as young as you were, and you will feel ancient by the end of this. The sheer physicality of taking care of a big, strong, bloody-minded young woman who hates to be touched at the best of times. Who can’t sleep when she’s in pain. Often for the entire night. Who lashes out. Who is bellowing and roaring. Who doesn’t understand why you can’t fix her.

If I tell you now, that you be will living this hinterlife for over a year, you simply won’t believe me. You won’t think it’s possible. After 2 weeks of extreme behaviour from Olivia, you will think “I can’t go on”, but you will have to go on for another 50 weeks at least. That doesn’t sound doable but you will somehow, somehow crawl there.

Two years later, the hypervigilance is still with you, it’s a form of PTSD and tbh you probably should go and get some help with it.

3. Loneliness

The final big thing to blindside you will be the loneliness. Although friends and family love you and give you heaps of moral support, nobody can actually DO anything. No-one else other than you and Matthew can look after Olivia when she’s screaming and smashing things. She can’t go to respite like this. In the next couple of months, she will physically attack two very experienced carers. Mostly it’s going to be just you, Matthew and Olivia in the house, all wide awake and frantic for days at a stretch.

The people who do manage to cut through and actually support you? The Learning Disability Health team whose existence you’re not even aware of yet. When they call, welcome them with open arms. They are wonderful people who will listen, believe you, and never give up on your girl. You will also have a fantastic GP and an excellent social worker. These people will back you up with the hospital, to ensure that she gets that much-needed scan.

The end

In early September 2025, you’re going to dream that you are talking to your beloved mum (dead for 10 years now), the only grandparent who could look after Olivia. In the dream, you sob to her, “I can’t do this, I need your help, please please come back, I can’t do it anymore”. And your mum smiles at you, her beautiful, brilliant smile, and she says “But Cooky, you ARE doing it, you’re doing a great job, you don’t need me at all.” It’s so vivid and real, it’s exactly what she would say if she was alive, and you are reassured, and wake up with tears on your cheeks.

At the start of October 2025, everything will finally begin to settle down. Olivia will be healing properly now. She was not be ‘cured’, there will still be wobbles, but nothing like the previous year.

Olivia last week 😊

Relentless Optimism

The good things that will come out of this ordeal:

1. You will buy and move into your dream home half-way through this saga, round the corner from your childhood best friend. You will love living there.

2. When Olivia gets better, she will be happier than she has ever been. She now has incredible carers, the best college in the world, and spends 90% of her time in the sea. Living her best Devon life.

3. Your son will do well at university, and make friends with a fantastic Exeter gang of young people, two of whom will work as great carers for Olivia

4. Your marriage will be stronger: you will be amazed throughout by Matthew’s resilience, his calm, and his love for his daughter. You will get through the year by being a team, and what a team, I reckon we could cope with anything now.

5. (Obviously the best thing) Bursting to communicate your experiences with Olivia, you will start writing a Substack in September 2025. It will be immediately cathartic, and connect you to a wonderful community of like-minded souls, other SEND parents and carers around the world.

Finally, being completely honest, I suppose that if I could say one thing to myself in September 2024, it would be

“IT’S AN INFECTED FALLOPIAN TUBE YOU BERK, GET HER TO A GYNE SURGEON ASAP”

But I guess we got there in the end.

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One last question to close the letter from Victoria.

Please share one quote/movie/book that’s inspired you?

I was inspired to start Extreme Parenting by listening to an episode of the We Care podcast, Care Fully Considered (Misery Olympics, 2/9/25). I love the organisation and the podcast gets great guests. This episode featured two journalists who said ‘We need more everyday stories from carers’. I suddenly thought ‘Why not me?’

And I’m eternally inspired by the Penguin Skipper in the animated film Madagascar, who shouts “Don’t give me excuses, give me results!” then slaps whoever he’s talking to around the head with his flippers. This is basically my mantra for life, and I think it helps me when advocating for my girl.

Prompt for discussion:

Have you ever thought, “I just can’t do this any more”?
What happened next?

Please like ‘❤️’ the article to guide others here.

1. LA = Local Authority

2. Premenstrual Dysphoric Disorder (PMDD) is a severe, cyclical hormone-based mood disorder. Affecting about 5% of menstruating individuals, it causes debilitating emotional and physical symptoms during the 1-2 weeks before a period (the luteal phase).