Kate Binnie, yoga teacher and music therapist, shares a memory of a hospice patient:
Paula wakes early every day and spends time in bed, praying. “I’m a good Catholic girl” she wheezes up at me from her chair, grinning naughtily. On her collapsed chest is a crucifix given to her by her mother fifty years ago, on her twenty-first birthday. She knits beautiful blankets with wild colours for each square, and takes delight in the clashing patchwork. Sunny Delight orange next to a torrid pink and then purple “just to mix things up a bit, you know!” she twinkles. Paula twitters in the Day Room, making sure her chair faces the open door so that she can see who enters and leaves the hospice through reception. She calls the brutally heavy oxygen tank that sits beside her like a World War II bomb ‘Gwendolin’. “Mind Gwendolin, darling!” she cackles as the two nurses needed to transport her negotiate the lavatory doors.
Nothing gets past Paula: a button missing from my shirt, knots in my hair (“My girl, do you not own a hairbrush?”). She’s become part of the furniture and somehow escaped the strictures of equity in service provision. Everyone else gets twelve weeks in Day Hospice, but no-one has the heart to send Paula home. Knowing this, she tries to make herself indispensible like a hostess at an awkward drinks party, covering difficult silences, filling everyone in on patient and staff absences, holiday plans and illnesses. She is terrified of not being allowed her weekly visit and, in light of her uncertain prognosis and frequent stays in hospital for chest infections (yes she does want IV antibiotics and yes she does want resuscitating), we just can’t turn Paula away.
Paula is extremely anxious, quite understandably. A lot of the time she feels as if she’s drowning, fighting for air. She can’t get around unaided any more, and even negotiating her tiny flat feels overwhelming. Everywhere she goes she needs a heavy tank of oxygen and has to know where the next one is. Her kids are far away and although they try their best, they’re not here. She is anxious about these things, and also about when the new tulip bulbs should go into the hospice garden, whether the volunteer with the bad back is going to get her scan, and about her granddaughter getting the right GCSEs to do medicine at university rather than running around with boys.
Her anxiety is compelling and exhausting and the nurses have tried endless rounds of cognitive behaviour training and relaxation techniques. Paula has hand-held fans coming out of her ears. But nothing works. Paula is a recovering alcoholic, so is terrified of addictive substances and won’t take the anxiolytics prescribed for her just in case things go bad again. She’d rather lie awake doing endless rosaries than “face the bottom of a bottle” which is where benzodiazepines might lead. Paula is hard to help, but she is acutely aware of the subtle backdraft of irritation around her, which she feels (quite rightly) is unfair. “If I had cancer – well, that’d be a different thing, wouldn’t it?” she mutters one day, spotting another inequity in the system. Paula watches the way we all flutter around the new patient with the horrible tumour as she sits there, wheezing, with an unglamorous and non-acute trajectory ahead of her.
It takes me a long time to work this all out in our therapy sessions, get past the twittering and one-liners and persuade Paula to sit with me quietly. I just want her to shut up for a bit so she can begin to feel. Getting to the therapy room with Gwendolin has been an ordeal, and it takes her a while to catch her breath. “You know how it is” she flutters her hands at me and sips more air into her chest. I don’t know, but I can see that it’s awful to be so breathless, so at the mercy of her failing lungs. This twitteriness is a vicious circle, and my instinct is just to get her to stop.
“Why don’t you relax your shoulders a bit, Paula” I suggest. I take her shoes off and rest her small, pretty feet on a folded blanket. “Look, get your feet on the floor so you can feel the ground. It’s there, it’s steady… can you feel it? Steadiness?” Paula nods, still sipping air, still hunching, but distracted by noticing her feet for a change. “OK, now relax your shoulders. Just drop them away from your ears as you exhale”. Paula drops her shoulders a little, and we do this several times: inhale, lift the shoulders up, breathing to the bottom of the belly, then exhaling, letting go completely. After three goes at this, Paula’s entire demeanour has shifted. She’s not flapping and twittering: she’s slowed and quietened down. We spend some time together just feeling feet on the floor, breath moving into the belly, and shoulders relaxing for a long exhale. I describe the breath to her as flowing like cream from a jug, or like a satin ribbon she can draw through her fingers without snagging or catching. Something beautiful, continuous and rich. Paula doses off.
When she wakes with a start a few moments later, she’s appalled that she slept. “How rude” she says crossly, but agrees that its nice to feel relaxed enough to sleep. “Can we do it again next week?” she asks. I say yes, and make her a CD of my voice saying the same things for her to use when she can’t sleep at home.
“Where does the anxiety come from?” I wonder aloud to Paula one day when we get to therapy and have got settled. It turns out there’s a litany of things: problems with her oxygen, her medication, her GP, her kids. But there’s more that’s not coming. We try music. “Let’s sit together and do the slow breathing, with feet on the floor, and then I’ll play and sing for you… just see what comes, Paula, is that OK?”
Paula goes through the by now familiar routine of placing her hands palms down on her lap, drops her bony shoulders, rests her stockinged feet on the floor and closes her eyes. She’s quiet. I begin to sing and play, first singing the instructions to breathe, relax and let go, and then with no words, just rocking music, three in a bar, attuned to her breathing patterns.
When I finish, Paula snaps her eyes open and tells me about her mother, who kept her very close. An only child with a father away at war, Paula was completely enmeshed with this mother who simultaneously loved her, smothered her, hated her, pushed her and competed with her. Her father died young and her mother never re-married. Paula remembers lying in the dark as a child, terrified, wanting her mum, but too scared to run across the hall and into her room, not sure if she could go in or not. She says she was “terrified”. She has always been terrified. She drank and was terrified; her first husband died and she was terrified; she re-married a philanderer and was still terrified. He took her money and her dignity and she started again, went to AA, gave up the fags, came back to God and felt a bit less terrified. But still, fear is the driving force all the time, making her wheeze and pant for breath, leaving her confused, anxious and crotchety. To cover all this, she fusses, cackles and cajoles, but behind the mask is the terrified girl, never sure, never good enough, never secure.
Paula and I see each other for eight sessions of therapy. She writes only one song, an acrostic poem called SECURITY. This in response to the question What’s most important to you? Paula closes her eyes, exhales deeply, then comes straight out with it:
Sticking to your promises, turning up when you say you will,
Everything in the right place,
Closeness, discussing things that matter,
Unpleasant things, difficult things as well.
Relaxed enough to have fun.
I need security
Yesterday, today and tomorrow.
She dies about six months later, just where she wanted, in the nicest room overlooking the garden in the hospice. She slips away one night, the day after my visit when I sit with her for a while, humming and holding her hand, watching her rib cage moving slowly up and down, a seemingly vast structure with no flesh to soften or hide it. I still think of her when I get impossible knots in my hair and smarten up before going into work, just in case she’s watching, cackling, at my inability even at my age to get myself together. I still miss her presence in the Day Room where the gaudy rug she knitted flares its beautiful colours from a beige recliner.
Kate is a music therapist and mindful yoga teacher with an MSc in palliative care. She is a research associate with the Life of Breath team, researching the application of body-mind interventions for breathlessness and anxiety in advanced disease.