by Dinah Latham
I tried hard to breathe; all Ricky’s weight seemed to be on my chest. With a feeling of panic overtaking the shock, I opened my mouth to speak when the miracle happened… Ricky laughed – a low almost growling chuckle, but it was an unmistakable laugh!
I eventually managed to ease myself out from under him, roll him over on to his back and support him with pillows. As I knelt on the floor next to him, helping him drink a much needed cup of tea, I fought back tears of joy as more random laughs just erupted from his usually expressionless face.
I’m at a loss to remember how I managed to get Ricky back to bed. I’m sure none of my manoeuvres appeared in any moving and handling text, but we accomplished it together. He was exhausted; it was clear that the intended event had now to be abandoned. Despite my failure to achieve what I’d set out to do, there was a lightness in my heart, and just a flicker of something in Ricky’s eyes as he struggled to inch his partially good hand across the bedclothes to touch mine… it was as though he was thanking me for trying.
I took the newspapers in the following day, intending to show Ricky the sports pages and discuss the outcome of the day’s play. The game had also been abandoned; not caused this time by my lack of expertise but by the incessant rain. The eyes in the expressionless face stared blankly at me. He needed something different from me today; he was tired and needed simply to be made comfortable and then allowed to sleep. No cheery one-way chatter today. I laid the newspapers aside. There would be another time.
After only a somewhat perfunctory wash and essential pressure area care, I sat next to Ricky, saying nothing while he relaxed and then fell asleep. I reflected on the ability to respond to the ebb and flow of patient need and how fundamental that was to the quality of good care.
Caring work is deeply thoughtful: yes, we do things for people; yes, all those technical skills are part of what we do, but true care demands so much more. It requires that we stand alongside those who are suffering, at times helpless as they are helpless, reaching across the unspoken gulf between us, silently using our presence to share something of their wretchedness.
This ‘being there’ is also a skill. It’s the essence of what nurses bring to healthcare.
* * *
Amy
I notice all the bikes and their riders on our walk this morning. They’re all arriving at the station ready for their early morning commute. Several of the bikes are chained in racks. Some look quite sporty with lots of gears; others look less loved, heavier, rather like the carthorse model designed for a job of work – sturdy and safe but rather slow. There is even one with a basket on the front that reminds me of the one I rode to school. There is no helmet attached to that one, while the gleaming, spritely streamlined one has a saddle that looks decidedly painful, with a smart aerodynamic helmet bolted to it. I tug on Harriet’s lead as she hesitates and sniffs a particularly enticing tyre; the tug encouraging her to move on and resist the urge to pee on the most stylish, expensive looking bike in the row.
The bike rack, with its evenly-spaced bars, looks like a row of railings. As we walk on, I’m transported back to the 1960s and a previous row of railings at the far end of Portobello Road…
* * *
I leant my bike against the shiny, blac, pointed railings and lifted the hinge behind the saddle to release my Gladstone bag. I pushed open the gate and began the steep descent down the steps to the basement.
No need to knock on this door. Amy would be expecting me. I reached through the letter box, withdrew the key on a string, unlocked the door and let myself in. I was washing my hands in the scullery sink when a cheery, “Is that you, nurse?” rang out from the next room.
I lifted the latch and stepped up into kitchen. I reached into my pocket to retrieve a biscuit to placate the snappy mongrel who was being moved out of his favourite chair by Amy’s insistent voice, as she waved her newspaper in the air. “Let the nurse git er bag darn, Oscar.” The said Gladstone bag was not allowed on the floor and would always be placed on a double layer of newspaper, on the chair, in an attempt to avoid fleas and bed bugs; at the very least it was protected from the dog hair.
There was a huge stove in the corner of the room; a black enamel contrivance with a pipe climbing from the range up the back of the alcove and disappearing into the ancient chimney stack.
She was ensconced in her usual seat; a large, rather shabby armchair that seemed to struggle to cope with Amy’s somewhat ample proportions. She reached down over the left arm of the armchair, retrieved a deadly looking metal handle, attached it to the front of the range and yanked open its door to reveal a roaring fire.
“Come over ‘ere, nurse and git yersel thawed out. It ud freeze yer tits off art there today. Anyha, I got sumock to ask yer before yer get started on me today.”
I held my hands out in front of the blaze, soaking up the warmth as I settled myself down next to the scrubbed table to listen.
Amy’s stories often started in the middle; an approach to narrative I quite like. They were often fractured in terms of their sequence and she managed to somehow unwrap her conversations as though she was taking the paper off a sticky, chewy toffee. It took concentration to fathom the focal point of the tale and I sifted the dialogue as she nattered on, making sure I grasped the hub of her concerns.
We tossed our conversation back and forth over the next ten minutes as I boiled up my forceps in a saucepan on the range, took out my biscuit tin of baked dressings from the oven and got ready to do Amy’s dressing; she talked and I listened. The discussion became stilted, somewhat artificial and unnatural, going round in circles. It was as though Amy was struggling to find the words for her question. I knew I must listen carefully, validate all that she was feeling, stay with it, and not be tempted to push her concerns aside by interjecting with erroneous reassurances.
As I removed the soiled dressings from the fungating wound on her right breast, the foul odour from the rotting tissue escaped into the room. I threw the exudate-laden wound coverings directly into the fire as inconspicuously as I could, and closed the door.
Amy had ignored the lump in her breast for far too long; in fact, for several months, and only gave in and called the doctor when the tumour had advanced, broken through the skin of the chest wall, was widespread and well beyond curative treatment.
Pauses became apparent in the stream of words and tears began to roll down Amy’s cheeks as I worked. She inspected my handiwork and I pulled the jumper carefully over her head, trying to leave the coiled top-knot of silver hair in place.
Oscar returned to Amy’s feet, waiting to jump back onto his chair as I began to repack my Gladstone bag.
Amy wiped her eyes with the handkerchief she had tucked up her sleeve, and I watched as she first bit her bottom lip hard then pulled herself to her full sitting height, carefully replaced the hankie, and locked a steady gaze on to my face.
“Well yer gotta tell me, Sister. No muckin’ abaart. How long ‘av I got?”
I dropped to my knees immediately in front of her chair and clasped both her hands in mine; her nails dug deep into my palms, her eyes stared so directly at me. This gutsy lady deserved the truth; it was now my turn to talk. Amy was listening. Amy was tough. I struggled, as so often before with a tough conversation.
I talked to Amy about what had made her ask me today how much time she had left, and what her thoughts were about that right now. All the while I’m assembling a collection in my mind of Amy’s thoughts. It’s crucial that I am sure how much she knows, while determining how much she really wants to know. What did she think might happen from here on in? Why was it important to know? Gradually, Amy voiced all her concerns. She wanted to know whether she would be able to stay at home. Whether there would be pain that she wouldn’t be able to cope with. Had she got time to find a home for Oscar? How will it happen? Will I keep coming? I told Amy that I couldn’t be sure how long she had, but that my experience would suggest that we were probably thinking in terms of several weeks, leadi
ng to perhaps several months. I paused. Amy waited. I continued, adding that it was probably unlikely that she would live beyond the end of the year, but I thought that for her to be here for the birth of her latest grandchild in a few weeks’ time was a real possibility.
Relief spread over Amy’s face as I reassured her about staying at home if she wanted to. Her grip on my hands relaxed as I explained the pain-relieving medication that would be available for her and that I would make sure she was not in pain. There and then we contacted the charity that would agree to take Oscar after her death; a big relief for Amy. Encouraged by my promise of support, of being there, she gave a sigh and asked if I would come back tomorrow when “Me kids’ull be ‘ere, Sister, and u’ll be able to ‘elp me tell um, wont yer?”
I left, having made sure Amy understood that none of my estimates were definitive, that we would know more as time went on and that I would always be as truthful as I could if she wanted to ask me more.
Amy held her new granddaughter. She was quite poorly by then and she died later that same week. There is a picture in the family photo album of Amy in bed cradling the baby with all her folks present and toasting the birth.
Probably the most important discovery I made in the twenty years of working with those who are dying is that family intimacy, of a quality that may never have been previously experienced, is often possible around the time of death. What is important tends to change in the urgency surrounding the threat of death. Family values are refocused and differences can be resolved. Parties can be given the opportunity to speak from the heart; to share precious exchanges. Many times, it is the district nurse who is instrumental in making this family healing possible.
* * *
Angela and Emma
We walk back through the high street as we finish our walk today. It is one of those walks – a bit like driving home sometimes when you suddenly realise you can’t remember doing the rest of the journey and can’t quite believe you’re there. I’m not really sure where we’ve been, but we’re about a mile from home with Harriet leading the way. I glance at my watch and, yes, we’ve been out a couple of hours, so we’ve obviously covered quite a distance and, yes, I vaguely remember reaching down and clipping her lead on as we came out of the wood at the top of Rectory Hill, but how we got there is a bit of a mystery.
At the other end of the high street coming towards us is a young girl of about sixteen years of age, dressed in jeans and a t-shirt, with shoulder length hair bobbing up and down on her shoulders as she walks between her mum and dad towards us. I direct Harriet to make her go around them and they laugh as she does her best to trip them up with her lead. I apologise on Harriet’s behalf and they move on, smiling happily. I think about another such family group…
* * *
Emma was on the big double bed, propped up against the pillows, next to her dad who was under the covers looking very pale against the crisp white pillowcase under his head. Emma had just had her sixteenth birthday and the cards were still up on the mantelpiece. She was reading the newspaper to Ray, her father. Emma was an only child, and Ray and her were very close and always had been, so Emma’s mother, Angela, told me.
Ray had been determined to beat the leukaemia for almost a year now and had fought long and hard. He now looked exhausted and I remember thinking it was probably the birthday that had kept him going and how I needed to prepare Emma and her mother for the possibility of quite a rapid deterioration now.
Angela came in with coffee for us all and sat on the bottom of the bed, reaching her hand out to hold his and talking to me about how tired Ray was now. Together we talked about how things might worsen over the next few days, with Ray wanting to know; wanting to prepare both himself and the family. Emma became quietly tearful and Dad, with effort, put an arm out to comfort her. Angela remained in control, as she had done throughout; always managing everything, keeping it all together, preparing nourishing little meals for Ray, plentiful clean bed linen, slippers ready with a warm dressing gown for when he needed help to the toilet. She seemed to be continually in control of all that was needed.
At Ray’s funeral, Angela was physically supported by daughter Emma and could be heard throughout the ceremony openly grieving. Huge, distressed wails of agony rang out in the church. Young Emma was silent with all her energies going towards trying to comfort her mother. In the days that followed, Angela even needed to be helped to wash and dress, needed to be fed, and was sleeping only with the aid of sedatives. I was concerned about the amount of responsibility being shouldered by Emma and I managed to gather some family friends to help out with the physical help and care that Angela required.
I arrived one morning while one of Angela’s friends was helping her with her breakfast. I took the opportunity to sit at the kitchen table and have coffee with Emma. Angela was needing so much time and attention that I felt I wanted to give Emma the opening to talk about her own feelings about the loss of her dad. She was struggling to say anything; to talk at all. There were long silences between us that hung there waiting to be filled. Emma finally managed to speak. What she said was not what I was expecting and forcefully reminded me of one of the real strengths of district nurse care: the ability to focus on the whole family care rather than just serving the patient in the hospital bed.
Emma said, “I feel as though I’ve lost my mother as well.”.
This young teenager was indeed suffering a double bereavement – the mother she had known and relied upon was not there for her right now and, in reality, wasn’t there for her for several weeks.
After tears and tissues, I suggested to Emma that she began a private diary, where she could perhaps offload some of her thoughts over this difficult time. I arranged to go back several times, not only to care for Angela but to spend time with Emma where she would choose something out of her diary that she wanted to share with me. I wanted to acknowledge her myriad of losses and to validate her raft of feelings. It enabled her to be angry with her mother for, as she saw it, letting her down when she needed her most. I was a ‘safe’ person to share angry feelings with, and maybe this played a part in enabling reparation of the mother and daughter relationship in the fullness of time.
Over time, I found that where patients had died at home and where I had been involved for several weeks or months, families appreciated a visit on the anniversary of the death. Very often, it allowed the partner of the deceased to go over again the happenings of those last weeks and days with someone who was there and who cared. Other friends and family members, many times, had expected all to be well by now and my reassurance that feelings and experiences that may still be strong, raw and painful were expected, were following a usual pattern and were okay, so often seemed meaningful.
There was something else that happened with the relationships I made with families over these times. These connections may have been very close at the traumatic times but after those first anniversaries of birthday, Christmas and perhaps the funeral were over, the dynamics of our relationship altered. Things began to readjust and, very often, meeting family members, maybe in the street, when things had moved on or situations had changed, brought a distance that wasn’t an uncomfortable one but was clearly a reminder of another time and place. Not everyone wants to be reminded of those dark, unhappy days. So the goodbyes were said with warmth and thanks again, but with a sort of bitter sweetness that was happy to see me go. While this is exactly as it should be, I remember sometimes walking away with an empty feeling; a sort of regret that their relationship with me now only surfaced sadness for them.
In Emma and Angela’s case, when I revisited many months later they were planning a day out together on the anniversary of Ray’s death. They talked about the ups and downs of the last year without him and how, when one of them was up, the other was able to gain support from them, and vice versa. Just as it should be, they were working it out together.
* * *
There are times when less off-road walking is a must. The m
ud is just too thick almost everywhere: boots muddy, trousers muddy, Harriet muddy right up to and including her undercarriage most days, followed by a workout getting her clean when we get home. So today we are walking the highway or rather the side streets, back streets and alleys surrounding the main thoroughfares, in an attempt to avoid the worst that the softer ground has to offer.
* * *
I have never known a district nurse who wasn’t obsessed by street names. Having spent a lifetime looking for roads that don’t exist on any map and that no-one but the postman has ever heard of, it’s a difficult habit to break. House names continue to fascinate me, especially those that bear no relationship to the house or garden they attach themselves to. It was impossible to think that a house name would help direct you when you were in a hurry to make a visit. ‘Tall Trees’ would have nothing more than a scrappy bush on the landscape and ‘Wisteria Cottage’ would be a very large, three-storey barn of a place, with nothing more than pebbledash adorning its frontage. I’ve even found myself peering at road names while I’m on holiday.
Even now, I tend to remember people by remembering their addresses. Probably before I can recall their name, I’ll remember where they live. It is all a hangover from working out a route to manage a daily list of visits on a bike, I think.
Shortly before I left my last district nursing post, a student I had with me for the day asked me how we managed on the district before we had mobile phones. This of course now makes community nurses so much more accessible. My student looked stunned when I told her about the small blackboard and chalk that used to be allocated with your district nurse uniform when I first started district nursing and midwifery. Having juggled your daily visit list, calculating both the distance to be covered, who was due to go into labour and the amount of pedal power time needed, you then wrote the addresses on your blackboard with an approximate time of attendance. There were still many homes without telephones in the middle ‘60s, so when his wife went into labour, the husband would either cycle or drive round to your home to view the blackboard in your window and then come to the address indicated to find you and to ask for your help. As more people had both landlines and cars, the list would be of telephone numbers rather than addresses.