With the End in Mind

by Kathryn Mannix

  ‘It’s exactly what we just did,’ I say. ‘You can learn how to find the really upsetting thoughts, and then deal with them. For example, who told you about periods?’

  ‘My mum. It was terrible. She was so embarrassed. I don’t want that for Katy.’

  ‘So how would you choose someone who would do it better?’

  She considers, and then says, ‘Katy loves my sisters. And her best friend’s mum is lovely too. Katy likes sleepovers there, and she stayed with them when I was in hospital.’

  ‘So, of those three, who would you choose? And who do you think Katy would choose?’

  ‘I’ll think about it… Silly, innit? There was such an obvious answer, and I just didn’t see it,’ she muses. I point out that being really upset can get in the way of thinking clearly–which is exactly what CBT is designed to help with.

  Over the next three months, Vronny and I met for an hour’s CBT session most weeks. She learned to notice the way, when she was feeling sad or scared or angry, there was always some thought in her mind driving the emotion. She called them her ‘pop-ups’. Many of her pop-ups were thoughts about keeping things ‘normal’, yet she did allow herself to buy a larger pair of jeans, and decided to buy a soft, smart pyjama suit for daytime wear at home. (‘Elasticated waist! Like an old lady! At my age!’)

  In CBT, we looked at the thoughts and behaviours she used to keep her life on the rails, and tested different ways of doing things. We noticed that she rebuffed all offers of help, but was exhausted by her daily cleaning and vacuuming schedule by the time her children came home from school. She tried the ‘experiment’ of taking up her sister’s offer of calling round to help for an hour each morning, and found that she appreciated the companionship, the help with vacuuming the stairs, and that her whole life did not unwind as predicted. They shared memories of their ‘sex education’ talks with their mum over a particularly hilarious tea break, and Vronny asked her sister to do the honours for Katy ‘when the time seems right’.

  ‘We had a little cry then,’ she confided to me, ‘but it was a good cry.’

  Early on in CBT, Vronny identified the need to prepare Katy and her brother Ben for her death. This led to another ferocious bout of weeping, as she faced and described the haunting picture in her mind of her cherished children, alone and distressed in a school playground, with no one to turn to. This image, she admitted, was often in her mind, and was certainly among her thoughts on the day we first met.

  ‘What would help them most?’ was my initial question, and Vronny easily named several strategies that might help, starting with telling their headmistress about what was happening to Vronny, and asking their teachers to be vigilant for any distress at school; explaining to the children that Mummy is still not well, and she might sometimes be too tired to talk much, but she will always love them; and marrying Danny, so he can be named Ben’s legal guardian after her death. ‘He keeps asking me,’ she said, ‘but I feel too fat and heavy to be a proper bride.’

  The most daunting task Vronny set herself, though, was the preparation of memory materials for Katy and Ben. She had a family photograph collection, contained in three huge biscuit tins, but when she tried to sort through it and choose which photos she would write short notes about, so that Ben and Katy could have her memories of those occasions when she was no longer there to ask about them, she felt overwhelmed.

  ‘So I knew what to do,’ she told me in one CBT session. ‘Since I come here to think about the upsetting stuff anyway, I decided we could do that here too.’ She opened her shopping bag and produced two tins of photographs. ‘I’ve sorted them into a tin for Katy and a tin for Ben, but I want to put them in albums, and write about where we were and what was happening then, and what I can remember–like I would if I was talking to them when they’re bigger. Also,’ she added shyly, ‘I’m not a good speller. I thought you could help with that too.’

  My heart sank. I have spent my professional life with people facing death, and I have self-protection strategies to deal with that, but my discomfort zone is bereavement. I avoid bereavement preparation work–I find it simply too heart-rending. But Vronny was not willing to have any other ‘sad’ sessions, even with a highly skilled children’s bereavement specialist. So, with me taking advice (and support) from our bereavement specialist, Vronny and I extended our hour a week to include twenty minutes’ ‘children time’. It was both intriguing and terrible to hear her describing family memories, and help her to capture those lost happy times on notes, written in her round, childlike hand and attached to each photograph. She wrote letters for their eighteenth and twenty-first birthdays. Together we assembled two time capsules in those biscuit tins, to entrust into her children’s uncertain future without her.

  ‘I’m going to marry Danny, by the way,’ she dropped in coolly. She was trying to sound casual, but her grin was as wide as the sky.

  She was a beautiful bride, of course. Beaming and radiant, resting on Danny’s arm, holding Katy’s hand and kissing Ben’s head in the photograph she chose for both their collections.

  As a wedding present, I gave her two big photograph albums, one in a pretty butterfly design and the other decorated in the colours of Ben’s favourite football team. She knew what they were for.

  I wonder where they are now.

  Contemplation of one’s own death is a complex affair. Some people fear the approach of dying, others fear the moment of death, a few long to get it over with. Some fear ceasing to exist, others fear continuing to exist in an unimaginable way, and others hope for a promised paradise. Some experience the sadness of anticipated separation from loved ones, and others feel jealous of those who will survive without them. It is simply impossible to guess what another person means when they are considering their mortality. In palliative care, we have learned to make no assumptions: we ask. The interesting thing is that people are able and willing to answer, and when they share that burden they often discover, from within themselves, new insights and ideas that help them to cope.

  Pause for Thought: Naming Death

  Notice how often you hear euphemisms like ‘passed’, ‘passed away’, ‘lost’, in conversations and in the media. How can we talk about dying, plan our care or support those we love during dying, theirs or ours, if we are not prepared to name death? Do you and your family avoid the D-words? If you do, how could you begin to change this?

  If you were approaching your own death, who would be the important people to tell? Who do you hope would tell you if they knew that their death was approaching?

  Is death something the younger members of your family feel allowed to talk and ask about? Don’t assume because they never mention it that they don’t know. Just like Joe and Nelly, even young children may try to avoid upsetting adult family members if they get the idea that a particular subject will cause distress if spoken about.

  How do you and the people you are closest to make their views known? Do you all like to tell people clearly, or do some of you prefer to drop hints? How good are the rest of you at picking up each other’s cues?

  Do you know what kind of care your loved ones would like as their life’s end approaches? Or have you assumed that what you would like is also what they would like, or that you will be able to guess if you need to?

  If you were close to dying, would you prioritise being as awake and alert as your condition would allow, or would you prefer to be sleepier and less aware of the situation and the people around you?

  What balance do you see between the length of time you live, and the quality of life you are living? Do you think that, if you had a choice, you would choose to accept or to forgo treatments that extend your life if they do not restore quality? Would you prefer to live for as long as possible, even if it means being supported by machines in an intensive care unit, or to make plans that declare at what level escalation of treatments should stop, to focus on comfort instead of prolonging life? Do you feel confident that, if you suddenly became life-threateningly
ill, your closest family and friends would know your wishes and preferences about your care?

  These are big questions. They may take several conversations to work through. Do consider taking the time to discuss them now, rather than waiting until it becomes a matter of life or death. The staff in the emergency department, the rapid response team or the ambulance crew will be glad to know that you have made your wishes clear. And so will the loved ones who are charged with the responsibility of representing your views at a very challenging time.

  If you already have a serious medical condition, consider asking your GP or hospital specialist about what particular emergency situations it would be wise to plan for. In many areas, people can have plans written to describe what care to put in place if a foreseeable crisis arises. This avoids emergency ambulance dashes and unnecessary or unwanted hospital admissions, whilst making sure that people whose crisis requires an urgent response (and sometimes appropriate admission to hospital) get what they need. You can also request clarification of whether or not a non-resuscitation order is appropriate for you, and you can decline any treatment if you don’t want it–but you need to make sure that the important people involved in your care know your wishes.

  Looking Beyond the Now

  Seeing is believing. WYSIWYG. I heard it with my own ears. I was there.

  And yet, sometimes there is more to a situation than what we can see and hear before us. Sometimes our attention to the present detail prevents us from standing back to discover the pattern or meaning of what we are experiencing; sometimes our assumptions obscure other possible interpretations of the same information. The stoic philosophers asserted that it is not events themselves, but our responses to them that cause us happiness or heartache–at the prospect of the death of a beloved family member or friend, our upset may be mediated by our own sense of powerlessness or loss, or by the apparent distress of our loved one. But how clearly do we see situations in which we are deeply, emotionally immersed? What if our own assumptions and emotions impose a lens that colours our experience and understanding of what we see and hear?

  The next few stories all illustrate ways in which reinterpreting the situation may give us new insights, and greater wisdom. It is not the events themselves, but the way each individual perceives them that is our best guide, and we are wise to remain aware that there can often be another way to interpret what may have seemed an essential truth.

  In the Kitchen at Parties

  Despite the transience of the patient-members of our hospice community, we are frequently humbled by their ability to look beyond their own needs, and to befriend and support each other. Likewise, families form fleeting support networks during the shared portions of their journey.

  It was a reflection from one of these informal support groups that painted a new interpretation of our work for me.

  It’s a midsummer evening. The still-bright sky illuminates the hospice’s Japanese garden outside the ladies’ bay where four strangers are forging end-of-life friendships. Ama, a quietly dignified Japanese grandmother who married a British sailor and accompanied him to England in the 1950s; Bridget, a larger-than-life Irish matriarch who has run nursing homes in our city for many years; Patty, known as ‘Nana’ by her family and by all the staff, a riversider in her nineties rendered speechless by a brain tumour; and Marjorie, fondly dubbed ‘the Duchess’ by the staff here, who has a penchant for upmarket lingerie, fine cosmetics and expensive perfume.

  Nana has been tired out by a visit from her large and enthusiastic family. She has spent the day in a wheelchair, and her adult grandchildren have wheeled her around the buildings, around the garden, around the local streets to a pizza restaurant for dinner, and then back to the hospice where, with a sigh of relief, she has been helped into bed by the nurses. Nana’s right side and her speech have been affected by her brain tumour; as the swelling continues she has access to fewer words and requires more help to move, but the left half of her face remains highly expressive, usually of humour and of her fabulous sense of the absurd.

  One of the things that Nana finds absurd is the amaryllis bulb that is growing opposite her, in a pot beside the Duchess’s bed. This was a present from her daughter, an actress who is well known locally and is tipped for the Big Time. Presented as an Easter gift in a jaunty golden bowl, the bulb has been developing over the spring and has produced a tense, cylindrical shoot topped by a pyramidal bud, so that it now undeniably resembles an erect green penis. The Duchess either ignores or does not see this resemblance, but Nana is fascinated and endlessly amused by it, chuckling every time the Duchess asks one of the nurses to ‘water my baby’s flower’. As Nana’s brain tumour evolves, her discretion decreases, and today she was reduced to guffaws of helpless laughter as the pot was borne aloft to the sink for watering. The nurses can barely contain their own amusement at the whole situation.

  The Duchess keeps a scrapbook of newspaper cuttings charting her daughter’s career, which she shows to anyone who will listen, or who cannot get away. Nana and Ama are members of that captive audience. Ama’s sense of etiquette remains strongly Japanese, and she is too polite to decline invitations to look at the album. The Duchess has adopted Ama as a lady-in-waiting, and is particularly interested in her views on the art of Japanese silk painting. Her long-term lung condition now confines the Duchess to the short distance she can walk wearing her oxygen mask; the tube will not extend beyond the four-bedded bay.

  Ama’s bed faces across the bay to Bridget. Many years as a nurse have taught Bridget to hold her own counsel, and she recognises a quiet fellow spirit in Ama. Occasionally the pair walk together around the Japanese garden, a peaceful space that was a delightful surprise to Ama when she arrived at the hospice. Arm in arm, in silence, they point out particular points of beauty in the garden. Bridget is entertained by the gigantic golden carp in the pond; Ama is more likely to admire the juxtaposition of colours and shapes amongst the plants. Ama’s Shinto spirit finds consolation in this beautiful place; Bridget’s Christian soul is uplifted by being able to help her new friend.

  Bridget always has a few minutes’ chat with Nana’s visitors, because she was once the matron of the care home where Nana lives. Bridget’s breast cancer eventually forced her into retirement, but she is very touched that the family still recognise and remember her several years later. She is delighted to hear that the high standards she set in the home have been maintained by her team, and Nana hopes to be able to return there when her radiotherapy treatment is finished. To Nana, the care home is her home and the place where she wishes to live out her last days; to Bridget, it is her life’s work and legacy.

  Ama has been struggling with breathlessness caused by compression of her windpipe from a large oesophageal cancer. She has had radiotherapy treatment, and a special stent has been inserted into her windpipe to hold it open. She has been with us for a week, and looks very much better. Initially afraid to move away from her bed, she has been encouraged and enabled by Bridget to gather the confidence to walk outside, and next week we hope she will return home.

  At our weekly team meeting yesterday we discussed each patient and, where appropriate, any of their nearest and dearest about whom we might have concerns. The relatives of the ladies in the Japanese garden bay were all up for discussion. Nana’s family seem not to realise that her radiotherapy will not cure her brain tumour. Ama’s husband is concerned about whether she will manage their steep stairs when she comes home. Bridget’s son is worried that his mother is having a spiritual crisis: she has stopped nagging him to attend Mass. The daughter of the Duchess is starring in a West End show and cannot visit, but her comedian husband is living in the Duchess’s house, visiting daily to entertain staff and patients alike, and, reports our ward sister, ‘is killing us with his double entendres about that wretched plant!’

  It was decided that we need to address Bridget’s possible crisis of faith (chaplain to visit); Nana’s son’s understanding of her poor prognosis (the leader or me to
have a word); Ama’s domestic circumstances (occupational therapist home-assessment visit); and anyone who has not yet seen the amaryllis now wants to take a look.

  This golden evening, I am on call. Although it is late, I am still here because I have agreed to meet the family of a patient who is dying, and they will arrive tonight from Australia after a twenty-six-hour journey. The chef is also working late, to make a meal for them when they arrive. He is sitting in the ward team office, where the amaryllis is under discussion.

  ‘It’s just weird and horrid!’ says Amanda, one of our older nurses. ‘I don’t know what it’s going to turn into, but today I noticed that it’s starting to bend towards the light. Ugh!’

  Ali, our youngest nurse, starts to giggle.

  ‘And you’–Amanda wags her finger at Ali admonishingly–‘you shouldn’t even know what we’re talking about at your tender age!’

  Tears are running down Ali’s face. She has hiccups of laughter as she replies, ‘Mandy, this is the 1980s, not the 1940s! And I am a nurse!’

  The chef is intrigued, partly by the amaryllis and partly by the ward office banter. ‘I always thought you were all so strait-laced and holy,’ he murmurs, and Ali convulses into further laughter.

  There is a knock at the office door, and through the glass I see the anxious face of Nana’s son. The nurses snap into professional mode, and I open the door.

  ‘Doctor, I heard you wanted to see me,’ he says. ‘And I need to ask you something too.’