A covering of feathers for the terrors of the night

How to struggle with the burden of other people's suffering.

Katherine Amphlett

Katherine is a counsellor based in the West Midlands.

Evie S. on Unsplash.

It’s one of the sad facts of life: that many of us at some point will see our parents get old and fade away. Sigh. It doesn’t matter how well prepared you are or how much you’ve thought about it before hand, the reality of a fragile mum or an exhausted dad can break your heart.

I’ve talked to my parents about this for years here and there. We’ve done lots of joking about seeing them off with a pink pill in the sherry, or ‘it’ll be a pillow for you Pa, if you’re too annoying’ – type thing. But when they left after Sunday lunch a couple of weeks ago, I had to clutch my husband. He lost his own mother last year… we’re still fluttering around the gap she’s left in our family. And now there’s my beloved olds too, looking diminished and moth eaten and moving at crepuscular speed. Ask Dad how he is these days, and he says ‘Old, dear’, and won’t elaborate further.

I can cope with this when it’s in short bursts. Visiting them for lunch or taking them out on a trip is OK and manageable, and there is still joy in family occasions. Mum’s birthday was full of love, even though she took all afternoon to open her cards and became hopelessly confused about who’d given her what.

But staying with them… that’s hard. Seeing the dust thick over the spare room; worrying about just how long that bowl of leftovers has been in the fridge. I whip about as unobtrusively as I can, scrubbing the bottom of the washing up bowl or putting their jerseys in a wash. I don’t want to be annoying – they won’t accept help and I’m not going to push – but it makes me sad. In particular I hate that my mum is in constant pain from crumbling bones, and that dementia has stolen her mind. Also, that as a consequence, Dad is irritable with her; he who has always adored her so much.

I could picture them vividly, the feathers, soft and heavy and beautifully patterned like an owl’s, and imagine I was peering out through them at Mum’s pain.

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Since childhood, I have struggled with the burden of other people’s suffering. I sometimes wonder if I’m exaggerating when I think about how much I mind, but I don’t think I am. I can only manage if I’m really ready for it. With my counselling clients that takes the form of very firm boundaries, regular supervision, colleagues to talk to etc… but with family it’s much harder. It’s just your own naked, soft-bodied self-shrinking from all the nettles and thorns – like a hermit crab without a shell.

So when I went down to Mum and Dad’s this time, I felt the need to prepare. ‘Put on the armour of light,’ St Paul says, which sounds just the thing. I hardly slept last time, tossing and wriggling through small-hour horrors with my neck hurting and a feeling of tears not being far away. What to arm myself with though?

The answer came in the form of an ancient poem - Psalm 91. I was listening to a Premier Radio presenter who is a pastor – a big, tattooed fellow with rings in his nose and lip – and he said it was his main defence when his wife was diagnosed with cancer. So, I looked it up, and I loved it. It was all about how the Lord will cover you with his wings and keep you safe from the terrors that visit in the night and the pestilence that stalks by day, or words to that effect.

Malcolm Guite (a poet and priest whose writing I love) says you have to treat Psalm 91 with care: it was the one Satan tempted Christ within the wilderness, challenging him to throw himself from the temple roof and God would send his angels to catch him (as it says in the psalm). It’s not to be taken literally, this psalm: you can’t deliberately put yourself in harm’s way and expect to be immune because you’re a Christian, like some of the vehement anti-vaxxers around the world who think faith alone will protect them from lethal diseases. But the message is that if you put your trust in God, he won’t let you be damaged in any important or lasting way by the evils of the world.

I memorised as much of it as I could. And then when I woke in the night – inevitably – with the dread hovering over me, I kept thinking, ‘The Lord will cover thee with his feathers’. I could picture them vividly, the feathers, soft and heavy and beautifully patterned like an owl’s, and imagine I was peering out through them at Mum’s pain and muddliness and Dad’s frustration and my own fear. They were like malevolent ghosts drifting through the dark, menacing and cruel. But Mum and Dad and I, our actual selves, were curled up safely, warm and hidden with the great wings over us.

And eventually, I was able to go back to sleep.

Article

Assisted dying

Death & life

9 January 2024

6 min read

What do you make of Esther?

A campaigner’s call to change an assisted dying law got family calling MND sufferer Michael Wenham. Here he shares why such legalisation will increase people’s fear of dying.

Michael Wenham

Michael Wenham lives with a motor neurone disorder, Primary Lateral Sclerosis. He blogs at My Donkey Body.

Today Programme post about Esther Rantzen's comments.

BBC.

"What do you make of Esther Rantzen?" asked my brother.

I knew what he was talking about, as no doubt all listeners of Radio 4's Today Programme would have done. Clearly the advocates of assisted dying, or specifically suicide, have launched the next round of their campaign, even enlisting the late Diana Rigg, whose resemblance to my wife was once commented on by an old welsh policemen, as a witness. Radio 4’s Today Programme devoted a great deal of airtime to the subject over a number of days.

My reply to my brother was that I thought it was a good thing if we were more open about the subject of death and dying. After all they are events everyone without exception will come in contact with at some point or another. So, the sooner we stop treating it as a taboo subject the better. However, the dangers of legalising assisted suicide, are proved by places like Canada and Belgium.

I don’t see any way to protect us from such coercion, internal or external, except to demonstrate through legislation that every life, however tenuous, is equally important.

In January this year I made a submission to the Parliamentary Health and Social Care Committee consultation on Assisted dying/assisted suicide. Here’s some of that submission.

“I am writing as an individual who was diagnosed with a rare form of Motor Neurone Disease (MND) twenty-two years ago and who has experienced the condition’s relentless deterioration since then. There are a number of my contemporaries who have survived that long. That, and witnessing the ravages of the disease on friends in our local MNDA branch plus an Ethics qualification from Oxford, is the extent of my expertise.”

“My first observation is how positively my contemporaries, with short or longer prognoses, with the disease seize hold of life. Clearly there are some who, like Rob Burrows, devote themselves to fund-raising and creating awareness; while others enjoy the opportunities of life that come their way. What might have seemed a death sentence has proved a challenge to live.

"Secondly, I have recently discovered myself how expert professional care can enhance what is often portrayed as undignified dependence. Good caring can in fact add to quality of life. The sad thing however is that it is not something which the state will normally provide. Along with terminal palliative care, domestic social care must surely be a spending priority for any government that cares about the well-being of all its citizens. I’m fortunate to live an area of excellent MND provision and good, though not abundant, palliative care. But I understand that this is not equally spread through the country. If it were, I suspect it would reduce the fear of dying which must be a major motivator for assistance to ending one’s life.

"Ironically, in MND, according to the Association’s information sheet, How will I die?, those fears are greatly exaggerated:

In reality, most people with MND have a peaceful death. The final stages of MND will usually involve gradual weakening of the breathing muscles and increasing sleepiness. This is usually the cause of death, either because of an infection or because the muscles stop working.

Specialist palliative care supports quality of life through symptom control. practical help, medication to ease symptoms and emotional support for you and your family.

When breathing becomes weaker, you may feel breathless and this can be distressing. However, your health care professionals can provide support to reduce anxiety.

You can also receive medication to ease symptoms throughout the course of the disease, not just in the later stages. If you have any concerns about the way medication will affect you, ask the professionals who are supporting you for guidance.

Further weakening of the muscles involved in breathing will cause tiredness and increasing sleepiness. Over a period of time, which can be hours, days or weeks, your breathing is likely to become shallower. This usually leads to reduced consciousness, so that death comes peacefully as breathing slowly reduces and eventually stops.

"So, this is a third and subtle danger of legalising assisted dying/suicide. It would increase people’s fear of the inevitable fact of death and dying. I think this can be one factor in explaining why, in jurisdictions which have introduced it, we see it being extended beyond the first strict limits. It is held out as an answer to this fearful fact, death, whereas in fact death and dying should be talked about in realistic terms, as normal, as concisely outlined by Dr Kathryn Mannix. As she says, normally dying isn’t as bad as we think.

If the government should be doing anything, the first thing it might well do, is to promote informed education about dying of the sort exemplified by specialists such as Dr Mannix, as well as adequately funding her former specialism of palliative care. It should start with schools’ curricula. After all every child will have encountered death at some stage.

Finally, the dangers of coercion, in my experience, are not so much external as internal. It’s often rightly observed that prolonged pain is worse for the engaged spectator than for the sufferer. If you care for someone, seeing them struggling is barely tolerable. You may wish to see their struggle over, but underlying that wish is your own desire to be spared more of your own horror show. The person who is ‘suffering’ however has that strong survival instinct, common to all humans, and is more concentrated on living than dying. Having said that, when you are depressed, as might be natural, that instinct gets temporarily eclipsed. Then you need protection from your own dark sky. It is at such times that your other inner demons emerge: your sense of being a burden - to your family, to your friends (if you have any), to the NHS and to the state purse; your fear of losing your savings and of leaving nothing to your loved ones; your fear of pain and of dying (exaggerated by popular mythology), and your sense of suffering, heightened by your depression.

"For most of us with long incurable diseases, it’s these internal perceptions that are most coercive, although they can be easily compounded or even exploited from outside. I don’t see any way to protect us from such coercion, internal or external, except to demonstrate through legislation that every life, however tenuous, is equally important to our society and worth caring for. ‘Any man’s death diminishes me...’ and so we will value it to the end."

I'm grateful that when I received my 'motor neurone disorder' diagnosis, which was initially frightening, I couldn't be tempted to opt for an early death. Instead of one Christmas with my family (as I warned them), I've enjoyed 22 more Christmases. That was the law against suicide fulfilling its safeguarding function, protecting the vulnerable, as I was then. Contrary to my preconceptions, my form of MND (PLS) is very gradual and I've been able to live a full if increasingly limited life, thanks to my wife, Jane, who cares for me 100 per cent. 24 hours a day, seven days a week.

My view is still that legalising assisted dying/suicide has more cons than pros. The better choice is to invest in hospice and palliative care, so that everyone may have access to pain and symptom care in the last years of their life.