Love and death

Following yesterday's editorial, The all-night conversation, on the policy of NHS Greater Glasgow and Clyde to move towards 'independent living' and 'hospice care at home' for the dying, we have received a number of responses. Today we publish
two of them.

Mairianna Clyde

I found Kenneth Roy's piece on the all-night conversation the most deeply felt and relevant piece of journalism I have read in a long time. He is absolutely right about the spiritual solace that the dying give each other.
     When my friend Lorna was dying she was in a hospice (in Kent) which unfortunately was really badly run and she had angry things to say of the staff there. But about the patients – that was a different matter. She told me how, in the evenings, after all the visitors had gone home, and the dreadful day staff were away, how the patients would gather quietly to give each other comfort and listen to each other. She recalled how one woman suddenly said, 'I could fair go a hymn'. Even though she hadn't been in a church in years. These conversations were the best comfort Lorna said she had. And Lorna wondered why the desire for communal singing that the woman had expressed was not more encouraged. And what had prompted the woman to want a hymn, rather than another type of singing.
     When my father was dying he was unfortunately in a hospital ward (he didn't make it to the hospice: his doctor said, 'Most of our patients don't live long enough to get into a hospice'). But it was a small ward with three other men, who quickly befriended him. They were a cheery lot. On discovering my father had been a captain, a ship's master (he was 40 years at sea) they really looked up to him and called him, 'the captain'. He liked that very much. They were fascinated to hear his sea stories, which he was of course delighted to tell. He called them 'my last ship mates'. Dad was always a man's man. It was a pity he had three daughters and was stuck with us women at home.
     When Dad's condition deteriorated later on in the week there were plans to move him to a side room where he would be alone and where the family could come and go at any time. (It was also so that his deteriorating condition wouldn't distress his fellow patients, who were non-terminal, and their visitors, but we didn't like to say so). But dad fought this, so I said to the nurse not to move him (for the time being). I know he got more comfort from his fellow patients, being 'the captain' of this side ward, than being our dying father. I feel very grateful to these men, his 'last shipmates' for their manly camaraderie, which was not something his womenfolk could offer. I acknowledge my limitations.
     I think it is absolutely right that one of the benefits of hospices is the opportunities the dying have to share their bleakest questions about death with each other without fear of horrifying the living. Or worse, of being given platitudes by the living. This frank and fearless sharing and setting in order of one's deepest fears of non-existence, the reflection, the letting go, the making peace with death, is a crucial part of dying with dignity.

Mairianna Clyde is a lecturer and writer

Catherine Czerkawska

I couldn't agree more with Kenneth Roy about the hospice. You simply cannot give this kind of end of life care at home. By the time my mum was admitted to the hospice, we couldn't even lift her, we were so afraid of breaking her. Every bone was brittle. My son Charles was only a wee boy. I was sleeping at her house and coming home in the day for him. No nurse can come in for 24 hours. They don't even offer seven days a week care.
     Good as the hospice was – and it was excellent – I remember the director saying to me that you couldn't expect to have weekend care in the community. 'After all, nurses have to have their weekends off, just like everyone else.'
     So while mum was still at home, if there was a crisis, as there always was at the weekend, it meant phoning Doctors on Call, admission to A & E and junior doctors asking this dying woman a string of inappropriate questions.
     With hindsight, I should have asked the director how he would feel if his house had gone on fire at the weekend, and he had dialled 999 to be told that he would have to wait till Monday 'because of course firemen have to have weekends off just like everyone else.'
     Once she was admitted to the hospice, everything became easier. But if you ask anyone who has ever had to care for a terminally ill patient at home, what it was like, I suspect they would give you the same answer. I've a friend who spent years struggling alone to look after her mother at home, only to be left completely in the lurch, all benefits suddenly suspended, after her mother died. She'd served her purpose and they didn't give a stuff.

Catherine Czerkawska is a playwright, novelist and poet

[click here] for The all-night conversation by Kenneth Roy