With Love From Edward?

Main image by Simon Berger on Unsplash. Other photos by Jane del Pozo.

9^th January 2024

A couple of nights ago I was working at the end of life hospice. It was my first shift in a few weeks, having not gone in over the holiday period. Yes, the hospice still runs – 24/7/365 – but having my older two home for a full 7 days (Megan) and 10 days (Ben) meant that I was not going to sacrifice a single evening. Even if Ben and Megan went out with buddies quite a bit. I kept an eye on the staffing page though, and saw that adequate coverage was in hand. There are enough people for whom spending 24^th, 25^th, 31^st December or 1^st January in the hospice is a pleasure. I am sure my time for that will come, when the kids no longer come home – but not yet.

Two new residents had moved in since I was last there a few weeks ago, and the former two are still alive and kicking, so it meant for a full house. Combined with some new rules coming into play around bringing in less external support for the evening shift, it meant that we were full on for the entire five hours. On Sundays we also cook dinner for those residents still eating (three of the four, currently), as well as for the volunteers (three of us). Yup – we were busy.

I had the opportunity to meet a “young” (okay, “young” as in “my age-ish”) man in “Mike’s room”. Alright – so he’s not that young. He is about to have a big birthday – the big birthday that will be my next big birthday. And he has a brain tumour – I believe a glioblastoma, like my brother Edward had.

He reminded me so much of Edward, even though Ed didn’t make the “big birthday” a full ten years younger than this resident’s upcoming one. I struggle to remember how old Edward was when he died – perhaps because he was younger than me, perhaps because of everything that came afterwards, perhaps because I am losing some of my mental arithmetic capabilities. I need to work it out. OK, he was 46. And seven months. So bloody young. I have more than a few friends with parents still alive at twice his age. And of course Julia was only a third of Ed’s age when she chose to leave the land of the living, such as we know it. Not a lot of logic in the mathematics of life, death and grief.

Ed was so fresh-faced. Right to the end.

Friendly. Funny. Quick. Witty.

Despite two operations to remove bad tumour and inevitably good bits of brain.
Despite drugs and radiotherapy.
Despite paralysis.

Even when he was slowing down – physically, cognitively, linguistically – Ed was still funny, friendly, quick and witty.

At dinner, the new resident – let’s call him Louis – joined us at table. The only one of the current four to be able and willing to do so. What to talk about with Lovely Louis?

The weather?
Climate change?
Summer holiday plans, now that we are into a new year? Your own? His?
Films you want to see at the cinema, or on Netflix?
Dry January and its merits?
New Year’s Intentions?
Tension you’re having at work with colleagues and bosses?
What he used to do professionally?
What he had hoped to do with his retirement coming up just a few months after his diagnosis?
His upcoming Date with Death?
His upcoming Big Birthday? (turned out to be an excellent choice – well done Wendy!)

I am often baffled by what residents seem to want to talk about. Sometimes it’s deep. Sometimes it’s surface level. I watch their energy and let them take the lead. I sometimes kick a volunteer under the table (or want to), or glare at them if I think they’re taking up too much air-time, being insensitive, not allowing enough space for the resident(s), cutting them off before they’ve had time to compose their thoughts, etc. Which happens. It makes me cross.

And yet skirting around and trying to avoid walking on eggshells doesn’t work either. Conversation can be surprisingly rich, positive and educational. There are a lot of brilliant people who end up dying, after all. I feel we get more than our fair share of luminaries at the hospice.

On Sunday, Lovely Louis hung in on the conversation – present even when he was quiet. He appeared to zone out from time to time, then came back with a witticism or new word or concept that had us all laughing.

I helped get him ready for bed after dinner with another volunteer, Wendy. It was a tender time. Intimate but fully public. Such a hard shift for anyone to make in such a short time. I sometimes wonder how I would manage that transition if it’s needed suddenly.

Like Edward, Lovely Louis has lost the use of one side of his body.
Like Edward, he needs help moving around.
Like Edward, he’s quite a big man.

I saw so much of Edward in Lovely Louis. Even though he looks different to my brother, I felt so reminded of him.

From the incredulity as he simply stared at his unusable arm and hand, followed by a resigned sigh, and the perfunctory gesture of moving it out of the way with his good arm.
From how his pace of speaking and moving around guided our pace of speaking and moving around.
From the way his head swivelled round, and his big round eyes locked on to mine as he spoke to or listened to me.
From his “in-out awareness” and “acceptance-non-acceptance” of all that was going on in his life.

I said, as I covered him, head to toe, with anti-skin-itching ointment (his chemo had had a deleterious effect on his skin), “Thank you for trusting me with this. I haven’t had much experience putting cream on grown men”. (Sometimes residents are aware that we are not trained nurses or caregivers, and sometimes they forget).

He didn’t say anything for a while, and I wondered if he’d heard. Then, just as happened with both Ed and Mike in their final weeks, when pauses between sentences lengthened immeasurably, he said – “Whatever you do, so long as you do it with presence and love, everything is okay. And you are”.

I let his words sink in. There was no need to rush. I could just be there in that moment with him, and imagine him to be my brother, who I never helped in such a way at the hospice because I wasn’t a volunteer back then. I was a sister. A “membre de la famille”. I was spared, he was spared, such intimate interactions with his sister.

A good thing?
So I believed.
But perhaps not.
It would have been a beautiful, tender moment with him too, I now feel.

Perhaps we should all learn these skills – hospice volunteers or not – of helping get grown adults to bed when they need that level of help. Taking the time – much more time than would be possible in a hospital – to ensure that cream is rubbed in properly, bed socks on comfortably, pyjama elastic resting smooth and flat all the way around the back, soft blanket wrapped over feet. Tucking someone in for the night, before turning out the lights.

I was offered a gift on Sunday night, and I took it gladly. Gratefully. A gift of trust, connection and service. A gift from Edward via Louis. Someone whose expression, whose needs, whose whole way of being in the world, was so reminiscent of Ed.

Tomorrow, 10^th January, is Edward’s “deathiversary” – already 8 years since he died. A ludicrously long time. And yet it felt no time at all when so much came flooding back to me in the space of a few minutes with another man with similar needs. I must be careful about projection – and I will be. But I so look forward to hanging out with Lovely Louis in the coming weeks, and with some luck, months. And I know how this disease goes. I will be attentive to prioritising time with his wife, children and friends. Every moment so precious. For all of them. Even though they may not realise it yet.