An A to Z of becoming a carer

An alphabetical perspective

Today’s post is from our very own Emma Gore-Lloyd, co-founder of #ThereForME. Emma’s partner James became ill in autumn 2022 and his condition quickly deteriorated early the following year. Participating in the typographic project 36 Days of Type that spring, she decided to use the activity to reflect on her experience.

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I started with A in April 2023, when my partner James was mostly bedbound and I had just realised I had become a carer. I didn’t finish Z until August 2023, when my partner’s condition had become Very Severe. He had not yet been diagnosed with ME or tick-borne illness. This record reflects my experience of navigating my new role.

A is for Antihistamine

In January we heard that both H1 and H2 antihistamines can be helpful for Long Covid, so we got some from the GP (eventually) and started a low-histamine diet. Some vegetables and fruits are off the table, like tomatoes, aubergines and strawberries. Apples and pears are AOK (unlike the stairs, which have definitely not been OK for the last 3 weeks).

Learning the low-histamine diet.

B is for Baths

Baths used to afford James some relief and at first I would join him: it was an opportunity to spend some quality time together. Then it became too much. Recently, we've had a new experience together: the bed bath. It was heavy, though we managed a few giggles. Let's hope we don't have to do too many more!

C is for Carer

I've never thought of myself as someone who'd be good at caregiving, but my partner needs the help, and the help he shall have. It's exhausting. His parents are sharing the load, allowing me to have some time off.

Having a break with a friend. Photo credit: Anna Fostiropoulos

D is for Dependent

James is normally fiercely independent so having to depend on others is tough. It's hard to see him unable to do normal things, and things are only getting worse.

E is for Energy

Sometimes I feel I'm about to run out of energy and that scares me. I still get migraines from Post Concussion Syndrome and sometimes my energy levels can bottom out. If that happens, how can I care for James?

F is for Frazzled

I feel completely frazzled from trying to figure out how to navigate this. We managed to get an appointment with a private specialist last week and it feels good to offload some of the responsibility to an expert.

G is for Grief

We're both grieving so many things I don't feel strong enough to go into.

H is for Hope

You've got to have hope, haven't you? A colleague recently said to me, "Is he STILL ill? Is he going to get better?" I'm counting on it, Linda. I'm counting on it.

I is for Isolation and Intimacy

James only sees me and the couple of visitors he can handle. I do what I can to make his world less small. I also feel isolated. No-one else really understands.

Caring for someone in this way is pretty intimate. He's had to be vulnerable in ways that aren't comfortable for anyone. I can see how it could break a relationship.

J is for Jobs

James is lucky to have an employer that offers decent sick leave. Nevertheless, I worry about the future.⠀⠀⠀

As for me, I fear not being able to contain my emotions at work. Once, after a difficult call with the doctor’s surgery, a kind colleague covered half a lesson for me whilst I had a cry. ⠀

K is for Keep Keeping on

It's been six months already and it's likely to be many more before James is feeling healthy again - if he ever does. At each new low, I have some sort of meltdown. Part of me wants to fight against it, but I have to accept how things are in order to keep keeping on. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀

L is for Love and Loss

Love: fundamentally; obviously; vitally.

He's lost six months of his life to this already. He's missed so much.

An anniversary cream tea in February 2023 - the last time Emma and James were able to celebrate it. Photo credit: Emma Gore-Lloyd

M is for Medicine

When you're ill, you expect there to be some medicine to take. What do you take for Long Covid? His GP doesn't know.⠀⠀⠀⠀⠀⠀⠀⠀

N is for Now and Not Now

When you can't plan for the future, you have to live in the now. There are some Small Things (decorating) and some Big Things (adopting) we're having to put off. And that's OK (I keep telling myself).⠀⠀

O is for Overwhelming

Since the appointment with the specialist, I've realised how overwhelming it was to try to deal with this for so long without any guidance.

P is for Patience

If this isn’t a test of patience, I don’t know what is.

Q is for Quiet

Our house got partied in on the day we moved in, but has been quiet since. James listens to the radio, but it's very hushed: a sudden leap in volume causes him to wince. I'm grateful that we moved to this quiet street. Quiet's OK.⠀

R is for Routines

A routine really helps me, as it carries some of the load. I write it up and stick it to the wall instead of trying to remember it. Routine is easier on James’ body too, and helpful for sleep. ⠀

The morning routine Emma stuck on the wall when James first became bedbound.

S is for Sadness

Sometimes the sadness just comes and punches you in the heart and there's not much you can do about it.

T is for Tiredness & Trauma

I'm always tired these days! Getting a good night's sleep might be the best thing I can do for us both. I can’t stop thinking about the trauma this is causing him.

U is for Unsolicited

Something I've found very tricky to manage is unsolicited advice. It comes from a good place, but can leave you feeling unheard and even more alone. I try to let it quietly brush past me.

V is for Validation

Today, a friend sent a link to Woman's Hour which featured a piece on being a carer. Being seen and heard feels validating!

W is for When and Words of Comfort

When will James get better? When will he be able to go for a walk again? Sit in the garden again? We can't really think about these things.

It's regularly heartbreaking watching him suffer. I try to hit the right balance between offering a calm space for him to be held and understood, and offering reassurance that it will get better. It's hard.

X is for eXpert

Sharing my experience has helped me to make sense of some things. In difficult situations, we do our best to learn, to love, to get by: we become experts of our circumstances. I don't mean that we manage perfectly, just that we know what's going on better than anyone else. Perhaps there's some power in that, if we recognise it.

[There was a three-month gap between X and Y, during which the Long Covid clinic appointment proved pointless, his condition deteriorated further and words of comfort were no longer possible]

Y is for Yikes

This Is Hard.

Z is for Zzzzzz

Watching someone you love feel dreadful and not even be able to open their eyes is heartbreaking. Grief weighs a lot; it is HEAVY. It makes my body feel so tired. I'm very grateful to the friends who understand and sometimes help me carry a little bit of that weight.

The font Emma made at the time for 36 Days of Type alongside writing the A-Z. It remains unfinished.

Since summer 2023, James has been cared for 24/7 by Emma and his parents. Since starting treatment for Lyme and Bartonellosis in 2024, he has been able to speak a little and dictates poems he has composed. He still cannot tolerate light but he has taught himself to read braille from his pill packets. Emma is still counting on his recovery.