Sunday, 8 December 2019

Taking responsibility

Hastings, where I live, like all coastal towns has steep hills. That means the houses are built into hillsides, resulting in odd levels. A lot of the gardens rise up in terraces behind the houses, and many homes have spaces underneath at the front but not the back (or the other way round). When I moved back to Hastings after a spell of time living near Oxford, near the top of my list in choosing a home was level ground — roof and guttering maintenance is challenging and very expensive (scaffolding costs) if you live in a tall Victorian house and the land drops away making the top even harder to reach.

At the time I married my second husband Bernard, I lived in a tiny apartment in an Edwardian house. My home was  built into the two ground floor reception rooms, what would once have been the drawing room and dining room — which meant I had huge windows filling my home with light (another important feature of my list in finding a place to live). The land dropped away at the front of the house, so my apartment included the space underneath — a garage plus some dead space I used for storing wood for the stove. I converted the garage into a studio for ceramics and stained glass, for Alice and Hebe's use. In front of the garage was a hard standing for a car, that I turned into a garden. My bedroom window overlooked the little garden I'd made. The context was an urban street.

My husband Bernard died of a horrendous illness — pemphigoid — an auto-immune condition that broke down his mucus membranes internally, reducing his airways and the passage from his mouth to his stomach into open wounds that healed into occlusions so he could neither breath nor swallow. Always thin, he went down to skin and bone, and a tracheostomy eased his breathing. 

During our marriage, Bernard and I lived in his cottage on the edge of a wood in a country lane. He had never moved more than three miles in his whole life, and was a countryman born and bred. he loved the trees and the wild animals and birds, and his soul had a deep connection with them. It was his wish to die in his cottage, and we were able to make sure this happened.

But for about a month in the last year of his life, Bernard was in the hospital. You would, think, would you not, that a hospital was the very best place to take care of a person's physical needs; but I did not find it so.

This morning in my quiet time I found myself thinking back on those days. When his tracheostomy was put in, Bernard staying in the High Dependancy Unit for a day or two, where they looked after him superbly. Then he came back onto the regular ward where things went very differently. The nurses washing him turned him carelessly so the tube came out of his throat, and they hurt him when they unsuccessfully tried, several times, to ram it back in. He had to return to the HDU to have it re-inserted. Each time this happened he had to be sedated, but he could still feel under the sedation, only not respond, and he suffered greatly. When he was sent back from the HDU still under sedation, the ward staff were meant to keep him under observation as his consciousness returned. They did this by hooking him up to a blood-pressure machine that beeped every fifteen minutes, so every quarter hour they silenced the machine. That was the observation. As a consequence, in the confusion of recovery he pulled out the tube in his throat — and they tried unsuccessfully to ram it back in, and he had to be returned to the HDU to be sedated and have it reinserted. Every time this happened it hurt him and he couldn't breathe.

I realised that the only way to manage the situation was if I personally sat at his bedside as he recovered, to watch over him and stop him pulling the tube out. That went okay but, though I went in every day, the hospital staff never told me anything that was happening to him — I only had Bernard's account of it, which was confused by all the anaesthetic toxins coursing through his system, making his understanding like a waking dream, so that he thought he had been arrested and was in a prison. I never knew what was factually correct in what he told me, and in any case he had to write it all down because he couldn't speak any more.

I got very tired. 

On one occasion I was with him when a nurse came to wash him. He used to ball up a pair of socks and put it under his testicles, sitting in the bed, because he had got so thin that his testicles fell uncomfortably between his legs. I remember the nurse pulling a "What? Weird!" kind of face as he took out the socks so he could be washed. I explained to her. I felt such a surge of anger that she didn't understand and couldn't empathise.

There came a night when he went into absolute crisis. It was one more occasion when his tube was dislodged, and the sedation affected his thinking and he thought he was in prison. Desperate for my help, he begged them to fetch me, but they wouldn't because it was in the small hours of the night, too early.

But a fox came to fetch me.

This has never happened before or since. I was so tired during that time; I had a full-time job pastoring four churches as well, and taking lots of funerals to keep up my income — I used to sleep very deeply. I locked up his cottage and stayed in my little apartment in the town, near to the hospital and near the churches. I was woken from sleep by a fox standing under my bedroom window, looking up at the house and barking, barking, barking. After I woke and looked out, it went away and never returned. So I knew something was up with Bernard. By the time I got there at seven in the morning, things had calmed down a bit but he was desperate to come home. After that he started up with a cancer that went romping through his body, and though the hospital staff said they could take out his kidneys (where it had begun), he and I decided enough was enough and I brought him home to his cottage to end his life in peace. We managed brilliantly, me and my girls, as a team, and he died contentedly and beautifully.

I also looked back, this morning, on the end of my father's life. He hated being interfered with in any way — cut his own hair, never went near the doctor unless he had an absolute emergency, avoided the dentist like the plague. When his tooth fell out he glued it back in with superglue, attached to the one next to it, and that worked well for a while. 

He had a couple of medical emergencies in his life — gall-bladder infections that nearly killed him for which he needed surgery, and an enlarged prostate that blocked his bladder and created an emergency for which, again, he needed surgery. The prostate was not cancerous, and the operation should have been straightforward, but the after-care on the ward was slip-shod and he ended up with septicaemia that nearly took his life. We had an occasion when we were all gathered at the hospital while they transfused him throughout the night, and managed in the end to bring him through. It changed him. It was after that he moved out from living with my mother and went to live in a cottage on his own. I think, at that point, peace became of paramount importance.

In those last years, he was determined to do things his own way. The local council required that residents sort their trash for recycling — and he wouldn't. He was the only man in Hertfordshire for whom they simply had to make an exception. He drove his car well beyond the time it was advisable for him to be doing so — his driving was distinctly dodgy towards the end.  He went into the town to get money from the bank, and refused to acknowledge the parking restrictions. He preferred to pay the sixty-pound fine from the traffic warden than park where they said he could. He'd park outside the bank and that was that, fine or no fine. He just needed to do things his way. 

His death in the end was quick and simple. His heart artery split, and I thank God that he was spared any more goes round in a hospital or any kind of nursing facility.

My mother, who lives in a kind of dream world of her own these days, housebound and semi-hallucinatory, is utterly determined to stay in her own home. Thankfully she can, because she has the world's best and most dedicated carer, who comes in at least twice every day and watches over her like guarding the Crown Jewels.

What I observed, in seeing Bernard and my father grow old and reach the end of their lives, was that hospitals and doctors do not provide solutions in the way you might hope. I've learned not at all "doctors are useless", but that they cannot offer the remedial support I once expected. They sorted out some problems but substituted new problems of their own devising. The care was hit-and-miss, often rough-and-ready. Some nurses were excellent, others dire. The surgeons were skilled and effective but not holistic in their thinking and approach. When a man's body is disintegrating, "We can have that kidney out on Monday," is not helpful.

And there have been some things — like xanthelasma, varicose veins, fibromyalgia, depression, anxiety, tonsilloliths — for which my doctors had either no solution at all to offer, or none that proved effective. But that didn't mean no solution existed, just that I had to track it down myself.

I have seen that physicians and surgeons can save my life — they have done so for both my father and my mother — but watching my mother, I have also understood that I might not want my life saved. What one can cling to is not necessarily desirable.

So I realised, I really, really do have to take responsibility for my own health. By the grace and mercy of God, the Internet has come along to help us with this. 

I'd never known before that general anaesthetics trigger or advance dementia in elderly people. I never knew until this last year that rheumatic disorders, heart disease, diabetes, cancer, joint inflammation, Alzheimers, fibromyalgia, mental illness,  neurological malfunctioning (ADHD, ASD etc), Parkinsons and obesity are all linked together, and are to a significant degree the legacy of wheat and sugar — and for many people, dairy products, too — and we have the power to address these health scourges in our dietary choices. I didn't know about the opioid effects of modern wheat. I didn't know about the importance of adapting your body to relying on fat not sugar for calorific energy. I've learned about the effects of rest, and conversely of stress, and discovered the tool of intermittent fasting.

All my life I've had a sweet tooth. Left to myself I'd live on bread and jam, with the occasional ham sandwich or pizza, and sometimes swapping out the jam for lemon curd.

Learning to live on a diet of (wild or organic, pasture-raised, high welfare) fish/meat/poultry/eggs, nuts, mushrooms, non-starchy veggies, salad, low-sugar fruit, herbs, sea salt and coconut/olive oil, has been a dietary revolution for me.
But I have seen first-hand what hospital care is like, and so far as it is possible I want to take responsibility for my own health for as long as I possibly can. I have learned to my great surprise that the care of experts is sometimes inferior to managing my own care myself. In becoming an elderly person, how I look at it is this: every passing day I can successfully retain control of my health and independence is one day less to live at the mercy of patchy care from hospital staff. 

There is also the wider spiritual dimension, which I keep in mind. God watches over me. There were angels present when my youngest child was born — her sister saw them. A fox came to tell me when Bernard was in trouble and needed my help. "There are more things in heaven and earth, Horatio, than are dreamed of in your philosophy," remains true. If I also take responsibility to live in alignment with the flow of grace, allowing God's Spirit to course through my being day by day, then all things — even the hard times and the suffering — will work together for good.

But this I know. Nobody can live my life for me. I have to take responsibility.

In recent times, I have observed another thing. Happiness is a crucial component in all of this. Some decades ago I came upon a quotation from Archbishop Michael Ramsay, saying that at the end of one's life God would have only one question: "Did you enjoy your life?"

At the time I heard that, I thought it was nonsense; it offended me. I was a young woman then, while Ramsay was an old man. Only the perspective of age could reveal the importance and truth of it. However hard you try, however meticulously responsible you are, if you yourself are not happy you will a) get ill, and b) not be able to make other people happy. Reaching for your own happiness is as much a responsibility as diet and exercise. Happiness is not selfish and it isn't an optional extra. 

Happiness is like love — there's enough to go round. A mother can love four children as much as each other and as much as two children. She doesn't run out of love. Happiness is not a commodity. If you are happy, it doesn't mean you've deprived a homeless man in your country or a person in rural Africa of the happiness they could have enjoyed. And you cannot buy happiness. It is not monetised. Happiness comes from God not Mammon. It proceeds from an orientation of your life. If you live in the flow of grace, you will be happy. Nobody should ever feel guilty for being happy or for wanting to be happy. It's what God meant you to be.

One final thing and then I am done. You know the expression, "Not my circus, not my monkeys"? It's important. "Thou shalt not steal/covet" applies to problems as much as to anything else that belongs to your neighbour. To love is mandatory, so is kindness and forgiveness — without these flowing through you, you will never be happy. But respect and boundaries are vital too. You have to maintain your boundaries, and respect your neighbour's existential responsibilities. 

You have been given one life and one only. It is an immense and glorious opportunity; and one is quite enough.


Suzan said...

Thank you for your insights. After I left special education as a teacher I trained as an RN> I have seen people who should never been allowed to nurse. Good academic nurse do not necessarily translate to caring, empathetic nurses. Mymother cannot understand why I would not choose to fight advanced cancers etc. Sometimes the cures are far far worse than the disease. At 57 my body is failing me in many ways. I just choose to do my best and work on preventative actions.

I love that you brought your husband home. Sadly when dad died no one was with him. We were exhausted and slept through the phone calls. Yet, strangely, I feel no guilt. For years I had worked on putting his needs before mine and he had left us mentally a long time before.

God bless

Pen Wilcock said...

A couple of things there — firstly, what you say about your father. I'm sure that if he could have chosen, he'd have far rather had the love and care you gave him through years of his life, than a death-bed moment.
Second, what you say about people who should never have been allowed to nurse. Yes. I've worked as a care assistant in a number of different care facilities, and seen everything from dedicated, imaginative, conscientious loving care through to cruel insensitive indifference. Because care work is poorly paid and requires a lot of staffing, there will always be a mixed bag of souls in that work. Interesting, isn't it.

Jenna said...

In my nearly 62 years, my observation that happiness is like clouds, wafting in and out, depending on the weather (or the "whether", if you put stock in homophones). My personal mantra has been "happiness happens, but joy abides."

I just read a book, Pen, called "A Year of Living Kindly" (I think it was) and the author's big point to me was that there's "nice" and there's "kind." Sadly, the book fell short of the personal experiences I'd hope to glean, but that distinction has stayed with me, nudging me. Perhaps I'll undertake a year of living kindly and see what happens--maybe happiness will happen!

Pen Wilcock said...

Oh, gosh, how interesting! Will you remember to come back at the end of 2020 and say how it went? I love that idea! I'm going to look up that book. Thank you!