The Long Goodbye
Robbie Low on love and friendship in a time of trial
Mothers-in-law are the stuff of music hall jokes, a dire warning to men of how their own wives will end up. A man's relationship with his mother- in-law is, by tradition, a lifelong exercise in moderated hostility. A woman's relationship to her mother-in-law is no less fraught or complicated I am sure, though, for obvious reasons, I have less inside track information about that. The harridans that loom over their children's marriages, intimidating the women who have dared to ‘replace ‘ them and emasculating the men who have ‘ruined’ their daughters are the stuff of legend. According to music hall mythology, therefore, six months ago I had the dream job. I had to bury my mother-in-law.
Nothing, however, could have been further from the truth. As we stood at Iris' graveside in the bright spring sunshine on the hilltop above the river valley of home, I reflected on the gift of thirty-five years of remarkable friendship, affection and unfailing support. Without her the life and ministry of our whole household would have been so much the poorer. She encouraged, defended and assisted us as her children without being shy of pointing out the blindingly obvious if we had missed it. For her grandchildren she was a constant presence with the time and patience and affection that we as parents so often lacked. She loved the successive parishes in which we served, having come to faith in the first one, and managed to combine the roles of ‘Queen Mum’, housekeeper, enthusiastic parishioner, good friend and household drudge as if they were natural companions on the same curriculum vitae. For most of the quarter of a century of her widowhood she lived with us. True, she had a little house, bought when she moved to be near us, but we had to take her back there periodically to check if it was still standing. If we had rented it out for the last 15 years, I doubt she would have noticed. ‘Nana’, as she preferred to be called, was a natural part of our household. I suppose it never seemed odd to me partly because we all got on so well and partly because that is what I had grown up with. My own ‘Nana’ had lived very happily with my mum and dad and her grandchildren for most of her widowed life too.
The power of Iris' friendship and affection across the generations was not only a source of immense strength in the ‘glory’ days of family life and parish ministry, it was to become a rock and a sheet anchor in the days of adversity which were to dominate the last eight years of her life. For, though we did not know it at the time, shortly after her 75th birthday, Iris was beginning the slide into dementia. It was the beginning of the long goodbye.
Ask people what they fear most and they will probably tell you it is the remorseless cruelty of cancer. But, for the neo-elderly, close behind comes the terror of ‘ending up like that’, an inarticulate euphemism for dementia.
Dementia is a strange and lonely country from which there is no return. It is a place of confusion and frustration and, not infrequently, alternating bouts of anger and acquiescence. Comprehension and control slip away daily, weekly, monthly, immeasurably and irretrievably. For the sufferer it is the irresistible pull of an ebbing tide on reason and relationships. For family and friends there is the daily struggle to shore up the crumbling foundations of the faltering identity with reassurance and affection. For all concerned it is exhausting and bewildering. It is a test of humour, of patience and of love and there are days when saints would struggle to post an average score.
Dementia begins almost imperceptibly. There are no signposts on the route and such as there are become visible only with the benefit of hindsight. For us and for Iris it began, insofar as these things have a measurable beginning, with an apparent faint in a busy shop. It could have been just that, a hot day, a soft landing and no harm done. Once or twice subsequently she seemed a little detached. She asked an occasional peculiar question but nothing alarming. Sara and I went on holiday and Iris, with the back-up of our wardens, ‘house sat’ as usual. On return we were astonished to find that she had given a large amount of cash to a confidence trickster at the door. We were baffled. Iris was vicarage house trained – food and drink yes, rail warrants yes, night shelter dockets yes, cash never, never, never! More alarming than her mistake was her lack of embarrassment. She insisted she had been right. The man said he was a friend of mine and, in spite of all the evidence, she continued to believe his promise to return the ‘loan’.
Later that summer she had her own house double glazed. Nothing wrong with that you may say. Except that she told no one until it was done and didn't even discuss it with her son who is a builder and whose advice she religiously sought on the smallest practical matters. She refused to say how much she had paid.
Events followed one upon another, gathering pace. We discovered bottles of her tablets. She had stopped taking her medication. Perhaps that was the answer. Henceforth we supervised her tablet-taking at breakfast – a process she increasingly resented. I took her back to her house to pick up some items of clothing. A large packet of Readers Digest books had been delivered – not for the first time. Iris was never a keen reader. We sat down for a long chat. She was tearful and not a bit relieved. She had been worrying about her memory and desperately trying to keep up appearances that all was well. Two hours later I had discovered a veritable library of Readers Digest books squirrelled away in the loft and receipts for £2,500 worth of the blasted things over the previous 18 months. Iris had been trying to win me a car! She produced the personalized letter to prove that she was a prize winner. We've all had them. I patiently telephoned all the mail order companies whose receipts I could find and got her struck off their lists. I also put a block on premium phone lines which Iris had been ringing to win their prizes at £1.50 per minute. I discovered that she had changed her gas supplier every time someone had rung up.
She was, at that stage, embarrassed and grateful that someone had taken charge. She was painfully conscious that something was not right. Could we handle her affairs in case she ‘completely lost it’? As she still had vastly more good days than bad days I suggested she see her solicitor and give power of attorney to her son and daughter. Iris booked an appointment and a fortnight later we assembled. The solicitor could not have been kinder or more thorough. He explained the weight and enormity of the decision and when he had finished Iris hesitated. She looked at us, and looked at him and said, ‘I could not be in better hands. I trust them absolutely. Where do I sign?’ Six months later she would not have understood a word the solicitor said and that trust would be tested to the full. We would do our utmost to honour it.
The faint that had begun it now became a regular feature. Iris swooned during the Good Friday liturgy and not at the brilliance of my preaching. The faints were in fact TIAs (trans ischaemic attacks), mini strokes which cut off the blood from the brain. Within twenty minutes she would come round feeling very tired. Within an hour she would be drinking a cup of tea with no memory of the attack. Each time a little more of the control panel was knocked out and did not revive. Only once did she suffer a temporary physical paralysis. By the time Iris died she had endured 40 major attacks and innumerable mini incidents on an almost daily basis. She had vascular dementia.
Iris could no longer be left alone unsupervised. She ate well, argued about her tablets, could not think what to do with herself, wouldn't iron, couldn't shop, forgot how to wash up or make a cup of tea, had to be reminded to go to the lavatory, would lay her place at the table after a hefty meal and demand to know when dinner was. All outrageously out of character. One of the saddest twists was her relationship with my daughter, Alice, the darling of her eye. Suddenly Alice the beloved became Alice the enemy, accused even of trying to kill her. Iris chased her upstairs and Alice had to barricade herself in her room.
At this point we discovered the life-saver – the Day Centre. Here, on any weekday, and for several hours Iris was looked after by a team of remarkable women mostly who jollied, encouraged, entertained and made a joyful community out of a disparate group of lonely and often confused old people. It was, I have often thought, one of the outstanding works of charity in the parish. Here, too, we found Sandra, the angel of mercy who came to be our home support. By this stage it was taking Sara about two hours morning and evening to wash, dress/undress her mum and Iris would not co-operate. I was usually called to a lift Iris out of the bath when she refused to budge. She was never embarrassed, only cross that her sulk had been interrupted. Although Sandra never knew the lovely person we had known, her care and gentleness and affection never failed in the face of some grave of verbal and physical provocation from Iris. There were days when I had to read the riot act to Iris. It always upset us more than her because five minutes later she had no memory of it and would be sweetly sipping her tea.
Who goes there?
By this stage incontinence was becoming a major factor in all our lives. Nettie the incontinence nurse was a great help but no use when it came to finding where Iris had hidden the soiled pads (down the back of the radiator was the worst, I think). A robust sense of humour became a key part of the survival kit.
There were many days when it was like having a very naughty child. The difference was that all hope of improvement was replaced by the certainty of inexorable decline. The Girton maths scholarship girl whose family was too poor to let her go could no longer tell the time or add up a row of beans. The former wartime intelligence officer could not remember what happened ten minutes beforehand or identify her late and much loved husband in the family photograph album. The consumate actress who had declined a life on the professional stage to bring up her family struggled to recall the most familiar words of conversation, never mind the massive scripts she could once animate.
Every day was a strange safari, a renewed hunt for what remained of the old Iris, wrestling with her identity. Who was she going to be today? How much would we recognize of her? How much would she recognize of us? The one person who remained ineradicable in her memory was her mother. To the end she knew her face. One day, a year or so before she died, I came into the sitting room to find Iris dancing with the picture of her mother clasped to her breast. She stopped, her eyes filled with light. ‘Isn't she the most beautiful person in the world? That's my mother. I'm going to see her soon.’ I prayed that she would.
In all this, of course, we were surrounded by prayer and the wonderful extended family of the parish. Iris still came to church and received the sacraments. When she passed the church she would always say, ‘What a lovely church’. I would always reply, ‘And the Vicar's a lovely bloke too.’ On a good day she saw the joke. On most days she would say she would like to meet him.
Sundays were always our worst day. By instinct she would misbehave terribly, refuse to co-operate or even speak to us. By the time Sara had got her out of the door she was exhausted by Iris. Iris would then miraculously become a sweet old lady as parishioners took their turn to give a few minutes relief to the beleaguered home team. They looked after Iris before and after the service, they prayed with her, got her tea and chatted to her. Old friends would give up an afternoon to have her so we could have a few hours together on the increasingly mythical day off. Iris almost always rose to the occasion. To her they were friends while we were increasingly the ‘jailers’ who told her what to do, where to go, how to do it. We understood but it did not make it any easier.
Home from home
Well-meaning people suggested we put her in a home, but we resisted. She had cared for her children when they were weak and helpless, we wanted to do the same for her. We wanted her to be able to die at home surrounded by those she loved and who loved her. Surely that wasn't too much to ask.
In the end the events in the Church of England decided matters. Seven and a half years into the dementia and after fifteen years in the parish, we moved home to Cornwall. A much smaller house, on a hill, precipitous path, lots of stairs etc etc, we had no alternative. We found a small nursing home 400 yards from our door in the Old Rectory. Iris at least could stay in a vicarage to the end. The staff there were kindness itself and though she was not easy they agreed to take her. We visited every day and, in good weather, went for little walks into the neighbouring gardens. Struggling for even the simplest words now Iris made one eloquent final gesture. There was only one man in the house, Sid, who looked like an old pirate but had all his marbles. None of the other women ever sat next to him. Iris got up, went over to him and sat down. She snuggled into him and went to sleep. From that moment on Sid became her friend, her primary carer, her spokesman and looked after her with a tenderness that was touching to behold. He had been, he told us later, the local tramp. He had lost his marriage, his job and his home through alcohol. In the last few months of Iris' life he became for all of us a little window of redemption. With Sid beside her all the anger and frustration evaporated. When we came she would listen and watch and smile. Sid would report on the day and interpret. She wanted to be hugged and to kiss your hand. Just as everything seemed to be lost so everything was being restored. Iris visibly relaxed and got ready to die. When the end came a few months later she was completely at peace, able to look up and acknowledge the prayers and the messages of love sent to her from all over. Her little tired body, cuddled down like a child in an afternoon nap, and the ruined control panel of her physical mind were no longer impediments to her soul. We wept but they were not tears of sorrow. They were tears of joy and thanksgiving and relief for a great and abiding friend whose long imprisonment was about to be transformed by freedom.
Robbie Low lives in Cornwall
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