"Caring and Being ‘Difficult’" by Lucy Furlong

Spring Season Letters 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 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!

There are two previous seasons with Twenty-One Letters.

This Spring Season so far

1. Misunderstood, and everyone has an opinion,” By Victoria

2. “What It Takes To Embrace the Life He Has “ By Chris B. Writes

3. “The Long Road Home for a Different Kind of Future” By Haley Haddow

4. “Grace, belatedly..…Becoming the daughter she needed” By Sarah Bain

5. “Caring to Love.” A Letter to My Younger Self By Kirbie Earley

6. “My caregiving journey is a family healing journey” By Viva Mogi, MPA

7. “The Love Test” by Echoes of Memory by Sally Cave

8. “Nothing and Everything Will Prepare You for This Moment” By Brittany Carroll

9. “But You Will: A Letter to My Younger (Suddenly) Caregiver Self.” By Tina Matras.

10. “Leave It in That Room” By Khadra Awomer

11. “Stay Hydrated” by Bud Hager

Today’s ‘Letter from a Caregiver’ is by Lucy Furlong

I met Lucy at the start of 2025. A poet, teacher, writer and walking artist, I was intrigued by her labyrinth walking and her work. Do you know the difference between a maze and a labyrinth? I didn’t. A maze is a puzzle with dead ends and branching choices, while a labyrinth features a single, winding path that leads to the centre and back out again without any wrong turns. A labyrinth “draws you in,” as Lucy says in her World Labyrinth Day article, “Have you ever walked a labyrinth?”

Lucy publishes “Setting Sundays” on Substack, and I recommend exploring her website. As well as her MFA in creative writing, she specialises in poetry, and holds a Postgraduate Certificate in Learning and Teaching in Higher Education (PGCLTHE).

Here are two of her articles you may like to read:

• Walking Home. Over The Fields,

• It Looks Like We’ve Made it to the End. But it’s only the beginning.

Thank you for writing this letter, Lucy. I know you’re spending a lot of your creative energy and strength advocating for your son’s needs. Keep going. I’m sending some strength and support your way.

These days, caring means we have to be “difficult.” ‘Difficult’, ‘annoying’, whatever anyone says, trusting our gut and advocating for our person’s needs gets things done.

Author Bio: Lucy Furlong is a Forward and Pushcart prize nominated writer, poet and walking artist. Her work has been widely published and exhibited, is taught as part of the Open University’s MA in Creative Writing and has featured in The Guardian and on BBC Radio 4. The second edition of her poetry map, Amniotic City, is available from www.lucyfurlong.com

Caring and Being ‘Difficult’

24^th May 2026, London, UK

Dear Lucy,

Your son has just turned 19. 19 years old! He’s a young man! It made me think of when he had his 15^th birthday, back in May 2022, and how much life has changed since then for us.

As you know, back then, you had been back in the UK for just over 6 months, having returned from Ireland with S in December 2021, after getting stuck there during the pandemic. It was a difficult decision to return because it meant leaving Wexford where you loved living and also your husband (S’s stepdad) having to go back to the States.

But you had to go back. S was very poorly, and the GP in Wexford thought it might be long covid but no one really knew. He had been ill for months after contracting covid earlier that year, was exhausted, underweight and desperately unhappy, aged 14. Dad was at home in Tolworth (where we had lived with him until we got stuck in Ireland in March 2020) and was also very poorly, having undergone surgeries, chemotherapy and a significant amount of radiotherapy in the summer of 2021, which was now taking a serious toll on his health and wellbeing.

S’s 15th birthday in May 2022 was his first back at home since we went on holiday to Ireland in March 2020 and got stuck in the lockdown there. We were unable to return because Dad had just started six months of chemo and we couldn’t travel in the lockdown, and we were worried we might infect him with covid. So we stayed in our holiday home in Wexford for six months (instead of five days) and then moved into a rented house on the edge of Wexford Town in September 2020. We stayed until we travelled back to the UK in December 2021, having by this point been vaccinated against covid.

S’s 15^th birthday was, you remember, a lovely, sunny May day. You had been to the local party shop in Surbiton the day before and bought two enormous silver foil number balloons, a 1 and a 5 to make 15, and a bunch of others all inflated and tied with colourful ribbons, which you’d had to carry back to the car, and stuffed them down between the seats where they were hidden until the following morning. You got up early the next morning, got the balloons out of the car and took them into the living room, putting them by the fireplace along with birthday bunting and a pile of presents and cards.

Even this year, at the age of 19, he still got a massive balloon with Happy 19^th Birthday S… I suppose at some point soon I’m going to stop…maybe. Anyway, remember what was really special about his 15^th birthday? He could eat proper food again.

At the beginning of March 2022, he was formally diagnosed with Crohn’s disease and had to undergo what his consultant called ‘nutritional therapy’ which meant a liquid diet from March until the beginning of May that year. This was a special powder formula called ‘Modulen’ which S’s consultant had actually been involved in developing, and which would sustain him nutritionally for the approximate eight weeks he took it – and he could eat NOTHING else.

He tapered on to it and off it at the beginning and end, but for many weeks he drank five bottles of this powdered formula, mixed with cooled boiled water, and banana flavour Nesquik and did not eat anything solid at all. The diet was extreme but designed to rest his inflamed bowel and give it a break so that it might heal, and the Crohn’s might go into remission. Other then the claggy banana flavoured liquid, which he drank through a straw so he tasted as little of it as possible (the banana flavour made it just about palatable) he was allowed to chew bubble gum, so you were bulk ordering every flavour of Hubba Bubba you could find online.

Four years later, and I still have no idea how he managed to stick to it but he did. He’s a tough kid. He’s had to be. If he hadn’t been able to do it they were talking about tube feeding which sounded very difficult indeed. Do you remember making up the bottles every day? Boiling enough water, measuring the powder, cleaning the bottles…it became routine.

At the same time you were wondering what to eat as you felt bad about carrying on eating a normal diet while he had to battle his way through this difficult but vital Modulen therapy. So you decided you would mostly eat soup, a sort of liquid therapy of your own to show solidarity – but still a breeze compared to what he had to do. You were making big batches of soup to last through the week and trying not to eat in front of him, although most of the time he was staying in his bedroom.

By his birthday S had started eating proper food again, beginning with half a chicken breast on one day, a small boiled potato on another day, and building up his ability to eat solid food one step at a time, slowly over the couple of weeks before his birthday, while at the same time he gradually weaned off the Modulen.

The other very special part of this birthday was that Dad / Granddad was back at home, in fact came out of hospital where he had been since March, the afternoon before S’s birthday. While you had been dealing with the hospital appointments for S and liaising with various people in various institutions to try and get him the help he needed to get him back into education, you were also trying to look after Dad. The shock you and S had when you arrived back from Wexford in December 2021 to find he had lost significant weight, was struggling to eat and generally struggling – it was a big change in him, and even though expected was very hard to see.

I’m not going to write about everything you went through with Dad here, you know what happened. The summary of this particular part of his story, is that he was rushed into hospital in the early hours of the morning of the day S was due to start the Modulen. He had fallen and you had called your sister and she had gone in the ambulance to the hospital with him as you couldn’t leave S.

Dad ended up being put on a dementia ward where he should never have been, and for a week after was treated appallingly. This was to the point where you were so worried about him, and the fact that no one was listening to you when you were telling the staff that he had colon cancer, that in desperation you went through all Dad’s recent hospital discharge paperwork. You were looking for any possible contact information, and you emailed the PA to one of the surgeons that had operated on him earlier in the year.

You know this was one of several times where you had to be resourceful and think of a possible way around a situation which seemed unresolvable – and where Dad did not thank you afterwards but actually complained about how difficult you were and how cross he was at the fuss you’d made. As you know, the day after you wrote the email, the surgeon appeared on the ward where Dad was, and where at the time your uncle, Dad’s brother, was visiting. So you got to hear from your uncle what happened:

“Then we heard a loud voice saying “Where is my patient, Mr Furlong, who I believe is here?” and the surgeon arrived and said he wanted to examine your father. Your dad was not pleased that you had emailed the PA and was complaining about you, but I stopped him saying you had probably done it with his best interests in mind….”

The thing is, Dad didn’t want any fuss and didn’t want to lose an iota of control over his life. He was fiercely independent and stubborn to the last, and it must have been so difficult for him to deal with his outspoken and ‘difficult’ daughter making that fuss on his behalf. Maybe that’s why he vented about you to other people.

I want you to know that you did the right thing because I know you’ve doubted yourself and been made to doubt yourself. If you had not sent that email, they would not have discovered that Dad needed emergency surgery, which he had two days later – as you know this surgery was successful, if risky. In fact it was so risky he said “Goodbye, just in case I don’t come through” in a brief telephone conversation just before he was operated on.

But he did come through it – he went into ICU and was very ill, had delirium, was diagnosed with covid which he had contracted in the hospital and you had to make a case for him being resuscitated if necessary. He eventually got better and was moved to another unit down the road where he slowly regained his mobility, having completely lost it during the weeks before and after surgery. It was a long haul, but he recovered. If you hadn’t sent that email what would have happened? He would have stayed on that dementia ward or been sent home – the surgeon said he could have died at any time.

Instead, he came home the day before his beloved grandson’s 15^th birthday and got to see family and friends (and he stuck around for S’s 16^th birthday too). Somehow you dealt with all of that at the same time, and being called difficult and being accused of making a fuss and goodness knows what else. Being ‘difficult’ seems to be a requirement when you are caring for someone. Being liked - it turns out - is not.

But what is important is trusting that you are doing the right thing for that person, even if you are being told it is a waste of time, or you shouldn’t. You have to trust yourself and your intuition – because you’ve been proved right so many times, even if no one appreciated it, even your Dad who you loved beyond all measure. You know there are things you wish you’d done things differently – noone’s perfect -but you always tried your best. So be kind to yourself and know that the effort and determination you put into getting S the support he needed (aka being ‘difficult’) paid off.

And there are plenty of people who like you and love you.

Love,

Me xxx

The Closing Rapid Fire Questions from Victoria:

1. In a couple of sentences, describe one thing you do to move through fear or uncertainty during caregiving.

I practice mindfulness: I focus on my breath, taking slow breaths in and especially out. I think about my feet on the floor and try to stay in that moment and tell myself it will be ok and we will get through it moment by moment.

2. Thinking of someone you admire/respect (friend/colleague/well-known person), name three of their standout qualities/characteristics

I have an amazing friend, who has had several battles with cancer over the last few years, and three of her stand out qualities are: resilience, determination to continue living her best life, her generosity of spirit

3. What’s one quote/movie/book that’s inspired you?

“In the midst of winter, I found there was, within me, an invincible summer. And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger – something better, pushing right back.” ― Albert Camus

Prompt for Discussion

Are there times when you’ve had to be a ‘difficult’ person?

Postscript from Victoria:

If you’re walking around London, you may want to explore the “Amniotic City” (2nd Edition) by Lucy

“Furlong’s poems are recognisably sited; potential liturgies for re-enactment. They are proposals, less bent on cutting passages than on following clues to alignments of desire in patterns immersed in the terrain; an interweaving of intimacy and otherness.”- Phil Smith, The Routledge International Handbook of Walking

The next Summer Season of “Letters From A Caregiver” starts on Thursday.

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