Re-learning to Care
How friendships with older women healed me from caregiver burnout
It seems Jessica won’t leave the hospital. The doctors say there is nothing more they can do and she is deteriorating. Sorry.
Jessica’s older brother Eric — a man I have only heard about in anecdotes, thousands of miles away in Israel — keeps it short and sweet. They’re close, he and Jessica, despite the distance. Not so much her younger brother, who lives only a couple of hours’ drive from her little flat in Camden, with whom she has apparently never got on. Some old family trouble involving violent parents and mental illness — whenever Jessica talks about it her face clouds over and she changes the subject.
She has these dark moods that leave her unable to move for days. Has had them for a long time, she says. Once had a diagnosis of bipolar disorder, although I’ve never heard her talk of any ups. Only the downs. Maybe that’s because now there’s a lot more to bring her down. Arthritis, chronic UTIs, and now the cancer she thought she’d seen the back of. It’s not much fun getting old, she tells me. I can believe it.
I first met Jessica when I volunteered for Age UK in 2014. They thought we’d be well matched because, well, Jessica doesn’t suffer fools and apparently it was hard to find volunteers she would tolerate for long. They only told me that later though.
Our first couple of meetings were a bit tense — I could tell she was sizing me up, analysing everything I said. I babbled a lot about work, the books I was reading, the writing group I’d joined, the novel I would probably never finish.
As I babbled, I glanced around her tiny flat. The bookcases full of literary works in various languages, the record player and the stack of classical music beside it, the worn-out grey sofa she was sitting on, dressed from head to toe in black velvet, the four litres of cranberry juice on her coffee table. Her unkempt hair and badly-fitting dentures. The nude on the wall behind her, which she later told me was a portrait of her in her youth, sketched by a former lover.
Eventually, as the weeks went by, she seemed to warm to me, told me more about herself and about Eric’s ever expanding family in Israel, his children and grandchildren, whom she adored. How long since she’d last seen them, I asked. Oh, a couple of years. I doubt I’ll see them again, she added.
I carried on visiting her every week for the next three years, even after Camden’s branch of Age UK lost its government funding in the latest round of austerity cuts and the volunteer scheme ended. By that time, I couldn’t imagine my Sunday mornings without a trip to Camden.
Sometimes I would take her out in her wheelchair to a local café for brunch or coffee — a mission in itself, navigating the high doorstep out of her block of flats, and the narrow, cracked pavement that sent the chair listing to one side and veering dangerously close to the road. On the upside, my right arm got a good workout trying to countersteer, and she got to leave her flat and be out and about in her beloved Camden again. But more often than not, we just sat in her flat and chatted.
I empathised with her ailments, she offered advice on my disastrous dating attempts, we talked politics, lamented the state of the Labour party and their inevitable election defeat under Ed Miliband, she asked me for book recommendations and played her records for me.
One day, after she’d talked me through an obscure atonal piece she particularly liked, I asked if she would like me to take her to a concert one day. Kings Place was only ten minutes away by taxi, and the concert halls were all wheelchair-accessible. The next time I came round, she’d booked tickets for the following week. Over the next year, we went to three concerts at Kings Place, and one at the Barbican, she giving me a running commentary, drawing on her years of studying and teaching music, me listening, trying to hear it the way she did, and failing miserably.
In 2017, after the disastrous Brexit referendum, a sad break-up and a frustrating work environment provided exactly the kick up the backside I needed to get back out of the UK, I found a job in Hamburg, Germany and moved away.
Leaving London was harder than I’d expected, not least because of Jessica. I’d tried to find someone amongst my friends and acquaintances who’d be willing to visit her now and again, but everyone was too busy with their jobs and partners and all the other stuff young people do in big cities. The dimensions of our lives seemed vast compared to those of Jessica’s four walls.
I promised I would still give her a ring every week, and I did. Those weekly calls provided some structure to my weekends in the first few months without friends or plans, something familiar to anchor me to my former self as I grew into this new place. Over time, I came to feel more at home in Hamburg, but I still kept up the calls, which seemed to have become the highlight of her bored and lonely weekends.
The months and years passed, she grew more frail and more frustrated. The carer whose company she’d enjoyed turned out to be untrustworthy, another was well-meaning but dull. She rarely went out — her ankles were too painful now to walk on, and getting in and out of the flat without help was impossible.
And then came her cancer diagnosis. Hodgkin’s lymphoma — which might never have been diagnosed if I hadn’t persuaded her to go to the doctor and get a strange lump on her neck checked out. Still, they seemed optimistic it could be treated, and within a few months she was in remission. I breathed a sigh of relief, grateful that there was a chance I might see her again.
I shared the news of my new relationship, and then of my pregnancy with her over the phone, expecting her to be mildly disapproving since she’d never been interested in having a family herself, but to my surprise she was delighted. Throughout my pregnancy, she only ever wanted to talk about me and how I was feeling, whether I could feel the baby moving, how big my bump was getting. I promised that, if the pandemic was more under control by next spring, I would bring the baby to see her. I had never heard her so excited.
Since moving to Germany, I have become close to Joyce — the mother of one of my friends, who suffered a stroke in 2019 while she was visiting from the UK and has been in a nursing home here ever since. She’s a lively, vivacious woman who loves to gossip about her son’s love life, rant about politics and absolutely dotes on my baby. Her language is limited, and she doesn’t speak German, so conversation with her fellow residents is a challenge.
Again, my visits and phonecalls are something of a lifeline to her. To me, it has meant a lot being able to share my pregnancy and early motherhood with an older woman who has been through it all. And of course, it’s nice hearing how adorable my baby is over and over again.
My baby will never know his real grandma — my mother died when I was 23 after many long years of disability. At the time, I was angry. So angry at her for just leaving me like that, at the rest of my family for not noticing how distraught I was, and at the world for the way it treated people like her.
Despite being very close when I was little, we had a rocky relationship during my teens — my mum was opinionated and didn’t like to be challenged; I enjoyed debate and examining everything from all sides. She had high ambitions for me academically, whereas I would probably have gone a more creative route left to my own devices. On top of that, I was involved in her care beyond my level of maturity, and had learned to dissociate in order to cope.
I have now come to understand that, because of her disability, having a child was her only aim in life, the only thing she believed she could do, and she found it difficult to accept that her child wasn’t growing up in line with her expectations and had her own thoughts and ways of seeing the world.
Despite our difficulties relating to one another, when she died, it still left a massive hole in the middle of me, one that will probably never be filled. I stayed angry for many years — that was easier than accepting the hole — but I had never been allowed to be angry because that made my mum sad.
So I had to numb the anger, and to do that, I had to numb all my feelings. I felt no authentic joy, no true love, no real compassion, nothing. Part of the anger, I’m sure, was the sense of helplessness I felt as a child, watching someone I loved suffer and feeling powerless to stop it, and having that pain dismissed and overlooked by the adults around me. British people — northerners especially — do not wallow in their emotions, and children in particular are not supposed to be sad, angry, worried or scared about adult things like illness and death.
Getting to know Jessica, and now Joyce, I have relearned the value of just being there with someone in their pain, their frustration, seeing them and recognising their humanity. They don’t need any more than that. I couldn’t do that for my mother, partly because I couldn’t see her as fully separate from me. Her suffering was mine; her vulnerability was mine.
One thing that has plagued me since my mother died is the thought that she might not have known I loved her. I certainly didn’t always behave with love. But, although Jessica and Joyce have, in many ways, became mother figures for me, the crucial difference is that they are separate, distinct. I can empathise with them without being engulfed by them, enjoy their company for what it is without hoping to be mothered and being disappointed when the mothering doesn’t meet my needs.
I was sad I couldn’t be there in person to share Jessica’s final days with her, but I just hope she knew she was loved.
Jessica passed away peacefully on 30 August 2020. Joyce continues to be a delight.
