Tag: palliative care

  • dead man sleepwalking

    In this house of illness and pain I get lonely. Everyone is in bed by eight o’clock and the long night stretches ahead. Tonight I can hear the rain plinking on the skylight which reminds me of the sound of rain on a tin roof, the sound of my childhood. I am tired. My father can only take soft, resistless things. His swallowing or as the Greek carer calls it “his slow” is very deteriorated. Every day there are two sets of meals to make. I’ve been searching out the kinds of foods he can slow and which my mother and I can also eat with him, not so much to save the work as to include him and to try and beckon him somewhat out of the twilight in which he is living.

    When you’re in hospital, or in my father’s case living in a hospital bed in his own bedroom and then in a padded hospital lounge chair all day, meals are the highlight of the day. The clinking of the trays along the corridor, the slowly approaching voices. If you can’t look forward to that, what is there to look forward to? pain and dosings, people who pull you about and speak in a singsong tone, and death.

    There is a lot of work to do, and a lot of cleaning up afterwards. It’s like having children but sadly, I have been spared that joy. I have become preoccupied with brewing everything from scratch and am making rich bone broths on beef neck and chicken frames, slow-cooked casseroles in which the meat dissolves into tenderness, a rich bolognese which simmered on the stovetop for three hours until it was silken and plump. I offer little trays: clumps of his favourite soft cheeses and soft smoked oysters, and Dad might manage a teaspoonful before he turns his face away. The next day he will have more energy, he seems brighter, so the effort feels worth it.

    The carer has told me, “I cannot help my mother, I cannot help my father – but I can do this.” She looks after my father as though she loves him, standing ready with the clotted tissues for the food that he has held in his mouth for a quarter of an hour, refusing to swallow. She says, “You want to slow? Try to slow it. You can’t slow? Ok, then split it. Split!” And my father spits and she wipes his mouth for the four hundredth time.

    I had to do this today and I did it as well as I could. My brother had entered the bedroom and stood covering his eyes while I held out the tissue to Dad and then, behind Dad’s back so as not to hurt him, indulged the paroxysm which instinctively clutched my whole body. It’s not his fault and I’m not at all disgusted with him, I love him. It’s just a bodily reflex. The sensation of hot liquid coming out of my father’s mouth is too much for me. My mother lying up against her pillows announced, again, “Oh! you would have made a terrible nurse.” I have no doubt this is true. She gestured towards my brother, standing just inside the doorway so as not to infect Dad with his cold. She asked the invisible audience who accompanied our childhoods, “How did I end up producing two such lily-livered cowards?”

    My brother’s late appearance, two weeks into my short visit, is on account of the feud he and his wife have had with me, kept up for more than six years now; I threw a plate and they cannot forgive me. This was in May 2010. We had a family dinner at which my brother was tired and so stressed that he roared at his kid. The boy was two and I have seen him four times since. My brother is huge and his roar made us all jump. I said, “You know – I’m not sure you need to use quite that much volume.”

    There is dispute over what happened next. Brother says he said, We’re not interested in your parenting advice. My memory of it is: You don’t have kids so we’re not interested in your opinion. The cruelty of this when he knew, they all knew, they’ve all known, how desperately, dearly, deeply, strongly I yearned and tried to have children of my own, cut me like a clamshell across the throat. I can feel its ache now, as I write about it.

    The feeling of having been excluded, after a lifetime of being told by this family and this same brother I was over-emotional and over-sensitive, that I had “such an imagination” and thus had constructed most of the abusive events which dotted our historical landscape like felled trees, of being told that my opinion didn’t matter and my experiences had never existed, created a pain that felt intolerable in my body. I grabbed my plate of Thai takeaway and hurled it to the floor. As it left my hands all of the anger left my body and I thought with great distinctness, “Oh, you idiot. You are never going to hear the end of this.” And as so rarely, I was right.

    Plategate, a friend called it over dinner this week. She was joking that if I ever see my estranged sister-in-law again I should monitor our conversation for imagined slights. I should say, in a dark, gormless brute’s voice, “Oi, wotchit. Don’t you be sayin’ that, or I’ll killya. I’ll killya with this… plate!” She mimed drawing a tiny side plate out of her breast pocket and we folded up with laughter. Plategate changed our whole terrain and I have not been forgiven by my brother and his wife. She still keeps herself and her children apart from me on the grounds that I am dangerous, terrifying, violent. This accusation wounds me because it sits next to the hidden violence of my mother, who suffers some kind of condition that leads her to build towering rages which moments later in the wreckage she is unable to remember. All my life I have had a bone-loosening fear of that terrorising rage. The destructive, the lasting bolts she hurls. The silence afterwards, broken by my father saying, “Well, I was sitting right here, and I didn’t hear her say anything like that.” There have been times when I found no one looking back out of her eyes, they were avid like a bird’s, there was no one to reason or plead with. Very few people outside the family have witnessed this phenomenon and it was a great relief to me each time when someone did.

    My brother meanwhile has an explanation that ties everything in a bundle. There must be something wrong with me. In our twenties he told me there was something “wrong with your basic personality” and that was why I kept choosing unkind men. “You cling to these imaginary or exaggerated events because they give you an explanation for why your life hasn’t been all it could have been.” He has told me that as a child I was so irritating that our mother had no choice but to get angry with me. And once, perhaps a decade back, in a gentler mood he said, “I think you’ve just never experienced unconditional love. I think Mum and Dad didn’t know how to love you.” This struck me as a shaft of light between the trees and I bounded upstairs to ask Dad. This was after Dad’s stroke but before the cancer and he was lying in his daytime cane lounge chair, gazing out into the trees. “Dad,” I said, “Dad!”

    My father turned his head slowly. “What?”

    I was so excited I was hopping from foot to foot. “Dad, would you say your love for me was… unconditional?”

    “Oh, yes, pet,” he said. “Largely.” He looked startled when I started to laugh merrily.

    To be difficult to love is the fate of some of us. Of most of us, maybe, when we really get close to one another. Mopping up after another meagre meal which my father has picked at and spat out, passing the carer on the stairs as she carries him his fourth glass of cold milk for the night to make up for all the meals he wasn’t able to manage, I think about this. To love one another in all our difficultness is perhaps the most exacting grace of all: it is the fur in our mange, it’s the comfort in our cave; that’s just nature of love, it’s the manner of the beast.

  • the family stones

    Caring for Dad is painful. I love him, naturally, and now he’s very frail and unwell; so it’s wrung from me like dark water out of soaked wood. But Dad tormented me with minor sexual attentions during my pubescence and twenties, and into my adulthood; he would never listen when I said No and always overrode my assertions of sovereignty: so it’s hard for me to get close to him, it’s hard for me to touch him.

    A tilting hospital bed has been hired for the house and made up with my mother’s pretty pink floral sheets. Dad lies curled like a prawn in the arms of this vast apparatus, holding on gamely to the triangle-shaped handle that dangles from the back of the bed. He is half-starved and so thin that his bones stand out. His strong hands have withered into spotted claws. I stand by the bed and stroke his face gingerly. A tube comes from under the quilt and I am so unkeen to know its details.

    A Greek woman has taken up residence with her husband, as Dad’s carer, and she hauls him higher in his bed so that he can be winched upright to face a mouthful of ice cream or a big fat glass of milk which is what seems to be keeping him alive. “Don’t worry,” the carer said yesterday, meeting me at the front door with groceries and holding out her arms, “I come from the village of Hercules.” I hear her coaxing him to swallow. Swallowing is painful and slow. Dad’s swallow reflex is now so weak that he can’t take anything solid, for fear of choking. If he inhaled a crumb it could lead to infection and another bout of pneumonia. Privately Mum said to me a few days back she rather wishes one of these would “carry him off” – “It’s no life.” Then she started to cry and I persuaded her instead of rushing away on her walker to come sit down beside me on the couch and we can talk about it. How she feels and what might happen. Carefully I introduce the idea of what her life might be once she is alone in this house, what she’ll do. Coughed out at the far end of a fifty-year relationship. Death is harsh.

    When I came home from the polling booths Saturday Mum and the carer were seated either side of Dad on the verandah couch, coaxing him to take another mouthful of the egg flip he has for his breakfast. They have to urge him to each mouthful and then, for long moments, sit concentrating with him til he swallows.

    My mother is tired out and molested by sadness, she has cared for him since he had the stroke and now, since he’s had cancer. “It’s not fair,” she says, and this is the thought that undoes her. At some point in the day every day she cries and I try to just listen, I try to offer what small comfort there is. I keep wondering who will listen to her and comfort her once I am gone. Their close friend, losing her marbles, shows up at the house every morning asking for errands so she can help out; she is not someone it’s easy to talk to, she never has been. My mother despatches her to the shopping centre to bring back the wrong kinds of milk or to lose her car. The Blue Care nurse shows up and says piously, “I’m not allowed to lift.” The whole household’s exhausting. My family have never said clearly how they feel and it is difficult for my mother to say, I want this, I need that. She prefers to hint. “We do need some shopping,” she’ll say, and then wait for me to ask, “Shall I go?” Dad used to say, Gee, some cheese and biscuits would be nice. Gosh, I wouldn’t mind a gin & tonic. And then someone would get up and go to the fridge.

    Now he can no longer have crackers or toast or steak or any of the immensely solid English comfort foods that are his core diet. He seems to have lost interest in eating, which when I contemplate the plastic vials of meal replacements and protein shakes in the fridge seems unsurprising. But the kindly carer gets called upstairs four times a night to haul him upright for big glasses of milk. Clearly he’s hungry.

    In the supermarket last week in my jet-lagged haze I tried to guess what might be the various clues which would trigger Dad into his appetite. In the deli aisle I worked out that if I bought him beef sausages he would be able to eat the inner mince, suitably mashed. First I served the sausage whole. He sat up a bit and said brightly, “Ooh!” Then I spooned the meat out of its casing and mashed it up small on the back of a fork. He ate two tablespoons of sausage meat, a triumph. Mum said, inspired, “Hey maybe he could have pâté!” So I brought back some pâté, soft smoked salmon in tenderly thin flakes, a crumbling vintage cheddar and a creamy blue cheese, prawns with their mulchy orange and white striped meat, and the makings of an egg custard. The next night, presented with a parfait glass of prawns, cluttered with a peculiar curry sauce for which Mum had given instructions, Dad turned his whole body to grab after the tray. He had to be restrained until he could be sat up safely to eat a bit. Then it all came up again and I ran away and my mother had to deal with it. By stimulating his appetite I had only put him through more misery.

    At the counter of our local all-night store I showed up toting two giant flasks of milk with one hand and balancing a stack of four boxes of tissues on the other. The Korean guy who runs the store said, “Are youse having a party?”

    “Yeah – a phlegm party. You wanna come?”

    “Oogh,” he said.

    “I mean, jeez,” I teased. “What the hell kind of parties have you been going to?”

    “Ahhh,” he said helplessly, having run out of banter. With some difficulty I prevented him from stuffing everything into bags, and took it home to the top of the hill. I try not to run away but to sit next to Dad while he produces his vibrant spume of coughs, yielding blizzards of soaked tissues discarded in florets over the side of the bed. I am painfully squeamish with splinters and injuries and when he coughs, I cough too. It feels like my body is trying to vomit, I cover my ears and retch when I hear his chest rattling and carving. “Just think, darling,” my mother used to say, “only five Tertiary Entrance points saved us all from you becoming the world’s worst doctor.”

    I certainly am a terrible nurse and would have made a woeful surgeon. However we laypersons can love, and we can serve. This morning Dad began to cry and his whole face crumpled. The carer was away in the kitchen. I asked him, but he could not explain what it was that was so sad. “Is it because you feel so miserable and sick?”

    He nodded hopelessly.

    “Ah, Dad.” I had been stroking his face and his bony shoulder. I feel inhibited by the memory of the times he would grab hold of a handful as I walked past, graspingly unable to grasp how a routine which was mere sport to him could be so distressing to me. Dad would often pinch or fondle my bottom or comment on my budding breasts and he always acted so surprised when I howled with outrage and pain. “Dad! Stop it!”

    “Oh, but darling,” in an injured, high-pitched, goofy voice, “it’s only a bit of fun.”

    Now he is reduced to this skeletal frame who produces industrial quantities of mucus. His tongue, which laved the palm of my hand eight years ago after his stroke when he lay stricken as a baby bird naked in the lifting hoist and all of the nurses were out of the room, is thick and useless in his mouth. His eyes, which bored into mine that afternoon as I recoiled and cried out and he held onto my hand with surprising strength, still have that mischievous expression that is, in his character, life itself. I remembered him gazing at me over our linked hands, letting me know he was being naughty. I remember the repulsion and chagrin that gripped me and how I felt the need to blame myself because, overcome by remorse and compassion at his collapsed post-stroke state, I had pressed his head against my shoulder to embrace him, though carefully keeping it well clear of the breasts. Now on a sudden instinct I curl forward and lie my head on the side of his chest. It is the closest we have been since they beat me in my bed, after I escaped the year of rapes, when I was eighteen. One held me down and the other yanked an arm right back to whale into me. Their mouths were filled with filthy words, slut, tart, the boys at Uni will be round you like flies round a honey pot once they find out you’re on the Pill. Next day the girl who lived next door crept round as soon as my mother had driven down to the shops. “Are you ok? I wanted to call the police. I thought they were going to kill you.” He could not hit me now. He could barely even kiss. I closed my eyes and let the feeling of his liquid loud breathing fill me. And a kind of rickety peace that has hovered round me nearby and more distant, never staying, never settling, came and perched in my heart like a dirty bird, for a few long minutes.