'Be With' by Julia Jones

Mum with 'Mr Cuddlebear'
a present from her great granddaughters.
There's more than one way to 'Be With'. 
I think my mother may be dying – or perhaps she's 'just' seriously ill? She has an acute urinary tract and kidney infection, her lungs are crackly, her throat full of mucus.  She hasn’t eaten or drunk for several days and her breathing is rapid and shallow. She can no longer get out of bed, is alternately restless and drowsy, confused, hallucinating, dehydrated, delirious. She thinks she’s dying -- but she often thinks that (most nights, when I leave her). Is this time different?

I know so little about death.  When I go to the internet and consult the Marie Curie site I see Mum’s symptoms checking almost all the boxes – but also these may equally well be the manifestations of her severe infection, diagnosed ten days ago. So there’s no let-up in the struggle to get the antibiotic medication into her, as she spits and claws and hurls abuse the nurse or myself. ‘Not so much wrong with her lungs then,’ commented one of the carers after it had taken three of them to achieve a wash and necessary pad change.

I say ‘no let-up’ but I’m aware that people in Mum’s situation can be admitted to hospital for antibiotic medication to be given intravenously and also to be re-hydrated via a drip. I talked to my brothers earlier this week and we are agreed on refusing these options should they be offered, even if hospital admission would prolong Mum’s life – until the next time. Strictly speaking I’m not totally certain that we have the correct bits of paper that give us this right of refusal: ours is an ‘enduring’ not a ‘lasting’ power of attorney which means it’s old-style and more concerned with money than with welfare. We’ve always tried to ensure that Mum takes her own decisions (even when they’re not such good ones) but now she is no longer be deemed to have the mental capacity to refuse consent to treatment, as I discovered on a recent emergency trip to hospital. What I also discovered that day, however is the potency of her ‘preferred place of care’ form, which an enlightened GP helped her to sign several years ago. It allowed her to state in advance that she would prefer to be treated in her own ‘home’. How this form will stand up to real pressure I’m not sure but I watched the relief on the face of Mum's care home manager when I told her that Mum's potential refusals had been written down in advance.

Mum's 94. Her dementia is 'severe':  will this now become 'end stage'? I’ve seen others of her peers shuttled in and out of hospital in their last months of life, apparently caught in a system that doesn’t find it easy to recognise the term Give Up. I don't criticise other people’s choices (if they had a choice) but this hospital-home commute wouldn’t be right for Mum. Her survival chances are finely balanced; could go either way. So I’m treating her current illness as a practice for The End and the rest of the family seem willing to play it this way. I'm grateful to them.  

Be With is a book by novelist and poet Mike Barnes and is sub-titled Letters to a Caregiver. It’s already been published in Canada and will officially be released here in February 2019 by Myriad editions. Barnes, who also lives with bipolar disorder has been the principal caregiver for his mother Mary for several years as she copes gallantly, not always successfully, against her dementia. That’s one of the finest things about this book; Barnes's generously expressed admiration for his mother as she struggles with this extraordinarily intimate illness. ‘All people with dementia, and some of them strikingly, show depths of sensitive awareness, resilience rising to heroism and a capacity for joyful relatedness that is almost entirely missing from public discussions of their condition.’

'Joyful relatedness' is a beautiful phrase. And true. I’ve witnessed these moments of connection with other of Mum’s neighbours in her dementia suite and felt blessed by them.

Mike Barnes is the oldest of five children. His second sister Sue returned from living abroad part way through their mother’s illness and now shares the responsibility and concern with him. The other three are gone, vanished from their mother’s life. ‘Where are they?’ his mother used to ask, looking at their photographs, ‘Why don’t they come?’
‘She didn’t ask it often, and never with an edge of accusation or grievance […] It was, horribly, an honest question.’ Barnes says that he gives evasive answers.

Why do some people abandon their nearest relatives in his way? No doubt there are as many individual answers as there are relationships. We can't know or judge.  There are social and cultural factors as well; our post-Victorian rejection of anything that can be categorised as 'duty': our late twentieth century determination to achieve autonomy and personal fulfilment, especially if we happen to be female.  Sometimes I have felt defensive about my choice to visit Mum twice a day  – and often to prioritise these visits over other opportunities and invitations. Does it make me a saddo? Like deciding to be a stay-at-home mum instead of the first female governor of the Bank of England?  
You know that I'm joking but would you agree that there often seems to be a polarisation in our public discourse around Elder Care: either you dedicate yourself to managing the entirety of your dependent person’s care 24/7 or you hand it over and bunk off? Either you're Horton theElephant or Mayzie the Lazy-Bird. Perhaps we'll be thinking about these questions in a more nuanced way when we've watched Jimmy McGovern's Care tonight on BBC1. Or perhaps we'll all be more distressed, confused and obscurely angry than we are already.

What I've learned from other people in  John's Campaign over the past four years is that socially, culturally, individually we almost always get on better when we think in threes instead of twos: the person in need + the person with professional expertise + the person with individual insight born of love (or long acquaintance). More than fifty years ago novelist Margery Allingham was advocating a similar 'Triangle of Care' in The Relay (Beloved Old Age). Allingham developed her own concept of a handover period when an older person, approaching death, relinquishes their autonomy and a younger person, running alongside accepts the baton of responsibility -- whilst being enabled to maintain their own course and pace by the professional, paid-for skill of others. This has helped me constantly in the struggle to keep momentum in my own life (and family) whilst also being 'With' my mother in her last years / months / days -- whatever they may be.

Dedication in Pebble
Mike Barnes and his mother's experience of professional care appears generally to have been unhelpful and unhappy. We've been luckier: could I have written Pebble this year without the reliability of Moat House care staff? No I could not. Their trustworthiness has given me back big areas of my life. When I have done my Mum-shift for the day, I am clear and concentrating on something of my own, without the buzz of anxiety and guilt sounding too loudly in my mind. Going twice a day is not for everyone but there are so many other ways to stay involved and also to support one another. Because my brothers have made their own different but reliable arrangements I can always answer Mum's questions with a 'Yes he lives in Scotland but he'll be here to see you next month and meanwhile look at this lovely photo of his little girl' or 'Yes he comes to lunch with you, and here are his lovely flowers.'

That's all, it needn't be hard.  There's physical., in-the-room 'Be With' and there's the emotional support as well -- the clear assurance that whatever you may forget about yourself, others have not forgotten you. It's also massively helpful to the most regular visitor to know that there are others to talk to when you're worried; others who know and care, even if not so often physically present.

In Mum’s current situation, where we may either be rehearsing for her life's end or actually experiencing it, the ‘Be With’ message takes a new twist. Societally, there is a general feeling that no-one should die alone (though they very often do) and we applaud initiatives such as the Anne Robson Trust which attempt to counter this. Hospitals and care homes assure me that they 'always let them (ie families) stay at end-of-life' -- though it's depressing to discover how often this goes wrong. Death is a subfusc caller and dementia always terminal.

I hate the 'let them' phrase. Why should it ever be thought acceptable to impose restrictions at any time when people are in need? Who could ever say to a spouse of sixty years standing or a son or daughter of many decades 'Sorry, you'll have to go now. Visiting hours are over' -- ?

I liked Mike Barnes's book because of his constant reiteration that, hard as it was to be his mother's primary caregiver, yet he was gaining understanding, insight and experience that would never otherwise have come his way.  As Margery Allingham put it 'this is personal and private  and exactly as important in one's own story as one's marriage or the birth of one's child.'

Yet death is the obverse of birth in that you cannot be accompanied. Already as I sit next to Mum, practising through this illness, I can feel her getting further and further away, fighting her own body, going where I cannot -- and do not wish -- to follow.  Yet, paradoxically, when the time comes that we are certain she is getting close to the end of her life, it will matter even more to her family that there is someone with her. We may attempt to keep a more constant watch beside her – though statistics show so many people slip away to death in the brief moments when the people they loved have left the room.
To some extent we're doing this already. My oldest son emailed to say that he’d heard Mum was ill and therefore was planning to visit this weekend. 'She isn’t necessarily dying' I replied, knowing he lives at a distance and has a lot else happening in his life. 'I know, but I’ve been meaning to visit and I would have come at Christmas anyway so, when I heard she was ill, I thought I’d bring my visit forward by a week or two. I’m only coming because I want to.' He’s with her as I finish writing this. I hope the day comes that Mike Barnes’s siblings make some similar phone calls to 'Be With' their mother because they want to -- for their own sakes as well as for hers.

'How people die remains in the memories of those who live on,' as Dame Cicely Saunders said. Meanwhile I hope that all we're doing this week is practising our togetherness skills.  

It's my second brother Nick's birthday today.
He's a regular visitor and when he's not there
 he's represented by his flowers.


Mary Hoffman said…
I'm so sorry you are going through this. My sister is in a nursing home after a severe stroke and her EPA, which I managed to get her to agree to activate, is with my two older daughters. She made it before there were LPAs which cover health as well as finance (separately). But as next-of-kin, I have to be consulted about care issues and have discussed DNR with her GP.

I hope your mum slips away easily.
julia jones said…
Thank you Mary -- and very best wishes to your sister and all of you. Family support is so wonderful. Most of the time we all buzz around engrossed in our own lives but then suddenly, when there's need, there they are, solid. I honestly don't know whether Mum is at the end of her life or not. I've never seen her so ill -- but I have also seen some amazing examples of resilience among the others who live in the same dementia suite.
Rosalie Warren said…
Thank you so much, Julia, for writing this post. My thoughts are with you and your mum, and all who care for her.
Mairi-louise said…
Dear Julia. I remember these moments and feelings so well from my own Mother's last days. I remember too the conflict in my thoughts, both wanting her to go and wanting her to stay. I'm glad she's in a place where you have the freedom to be with her (as indeed you should have), it makes a world of difference to the quality of time spent together when you know you're not on the clock. If my experience is typical, memories of these days will become a comfort in days to come, whether this is the end or not, and her carers will forever have a place in your heart for making this time as "easy" as possible. I am thinking of you, Mairi-louise xxx
Kathleen Jones said…
Dear Julia. How beautifully you put all the confusion, dilemma and grief into words. But you will never regret your choices. Marriage and travel meant my mum saw very little of me or my children as they were growing up. I've always been glad that I could give her her wish to die at home. Those last days together just the two of us with visits from the palliative care team are among the most precious of my life. I'm thinking of you and your mum today. She is very lucky to have such a caring and enlightened family.
Susan Price said…
Painful, Julia, but so beautiful. Both my parents slipped away in moments when I had left the room, but my brothers, sisters and beloved aunt were with them. My aunt is all the more beloved for the rock solid support she gave us through that time.
misha said…
A beautiful post. Thank you. I was with my father at the end of his life. He was cared for by Mum at home and the three of us did what we could to help. Those final few days were full of love and I feel privileged to have been there.
Hi Julia I’m thinking of you and your mum. You are an amazing daughter and I hope things go peacefully for you.
Lindsay Fitzpatrick x
Jan Needle said…
I've said thanks so often for your Mum posts that it sounds trite. It's not meant to be. Thank you, Julia xx
Lydia Bennet said…
Thinking of you as ever Julia. According to friends' experiences, and hospice workers' accounts I've read, there are two approaches people have to their own death - either they need people with them if possible and can even 'hang on' for some time until some special loved one gets there, or they need to be alone - perhaps because leaving their loved ones is too difficult if they are present - and can choose to slip away while the devoted family is in the loo/grabbing a coffee/phoning other family with updates. So nobody needs to feel guilty for 'not being there' at the precise seconds of death, particularly if they've been there regularly and frequently up to that point.
Lydia Bennet said…
Oh, and yes it is a great privilege to share the end of life with someone you love, a privilege which becomes more apparent after they die and will be a comfort for ever. Helping to care for, and being with, my mother as she died was heartbreaking but also very special, an experience soon after repeated in a different way with my father.
Umberto Tosi said…
Your beautifully expressed moved me and evoked memories of my mother's passing twenty years ago. Her death was not unexpected, yet still a shock. I'm thankful that I could be with her, along with my daughters, in her final days. Thank you.
Bill Kirton said…
I've come late to the blog, Julia, but reinforce and reiterate everything that flows through these comments. You write so beautifully and so simply about such a devastating time and I wish there were something I could do or some words I could say that could ease the pain. My own mum's death was the worst moment of my life - but that was sudden and the news was conveyed in a phone call from my sister. I was crushed by it so I have no idea what the prolonged distress you and your mum have been suffering would have done to me. Your love and your caring show that the best impulses still prevail and still overcome all the negatives. I hope you and your mum soon have peace.
julia jones said…
Thank you all. Mum died this morning. I was sleeping / not quite sleeping next to her and realised that I wasn't hearing breathing any more. It took a few moments for this to sink and -- and for my youngest brother who wa there as well.I feel bewildered by this end to a unique period in my life. Thank you all for your constant understanbding and support xxxjulia
Rosalie Warren said…
So sorry, Julia. Thinking of you all xx
So sorry Julia. What a beautiful but heartbreaking post.
sfin1000 said…
So very sorry. So glad yoo were with her and she had that comfort as she went. All blessings to you and family. xo. Sharon

Popular posts

A Few Discreet Words About Caesar's Penis--Reb MacRath

A Glittering Gem of Black, Gothic Humour: Griselda Heppel is intrigued by O Caledonia by Elspeth Barker

The Splendid Rage of Harlan Ellison - Umberto Tosi

Little Detective on the Prairie

Misogyny and Bengali Children’s Poetry by Dipika Mukherjee