DAILY MAIL Dying at home – rather than in a hospital – is something many of us say we would prefer, according to a recent YouGov survey. But although the Government has said it will try to make it easier, it’s still an option denied to many people. Here, in a moving and ultimately uplifting account, writer NICK MAES describes his mother Marjorie’s death, and why it was so important for her whole family that it happened in the place she loved best…Mum’s dressing table was cluttered with all the usual things: hairbrush, hand mirror and make-up, photos, trinkets and a couple of jewellery boxes. There were also three transparent phials containing morphine. They’d been left in case we needed them. We no longer did.
If you had looked into my mother’s bedroom at that moment, you’d have seen me and my three sisters staring intensely through reddened eyes at Mum. She was propped up on her pillows, eyes closed in an apparently deep sleep, and she was very still. A few hours earlier, she’d been restless, pointing in the darkness to an invisible spot in the room, her eyes wide open as if she were afraid to close them. I think it was the slide into the inevitable that agitated her; but she was anxious rather than frightened.
I whispered her name and held her hand, while my sisters quietly reminisced with her about happy times and stroked her head. Slowly, the darkness of the night lifted.
In the quiet of that early morning, we instinctively knew she was dead, yet I suppose we were looking for a marker to confirm our suspicions. We half expected death to be signposted, even though we weren’t sure of what to look for. It wasn’t like the movies. The instant when Mum’s life vanished didn’t have a dramatic, defining moment; it had simply and silently happened. We naively held a mirror to her mouth, thinking we might see the exhalation of a misty shadow – a last vestige of life. There was none.
It was just before 9am on Sunday, July 6 when Mum died. She was 83. That was it; a quiet, dignified end to a wonderful life. I left her bedroom, sat on the garden step and sobbed in the morning sunshine.
Mum had liked to call herself Wil, especially if she was chatting to younger generations; she thought it sounded better than her real name, Marjorie. But opportunities to socialise were getting more scarce. Mum’s health had gradually deteriorated over the past couple of years, and rapidly in the past six months. Dementia was complicated by a broken hip, and recently an accumulation of smaller maladies had weakened her.
But Wil, being independent and bloody-minded, was determined to stay – and die – at home. She had always made this wish known; it was up to us, her family, to see it through. The first social worker assigned to Mum’s case was keen to put her straight into a care home. I got the sense that this was a stock response to old age: it was not specific to my mother’s needs or wants.
Our fortunes changed when Mum’s case was reassigned during an internal review. We now had a sympathetic social worker who helped organise regular home visits from carers and excellent support from Mum’s GP. She’d begun to suffer from various ailments associated with old age, as well as the problems related to dementia. She sometimes found breathing difficult, she developed a lump in her groin, her legs and feet were swollen due to water retention, and towards the end she felt generally unwell. Blood tests were taken regularly.
The last week
In her last week, a locum paid a home visit to take more blood, and he wanted to hospitalise Mum straight away. But regardless of her poor health, she left him in no doubt that she was staying in her own bed.
We didn’t expect Mum to die suddenly. The results from that last blood test pointed to her vital organs starting to shut down – yet she might, at the doctor’s guess, have another few weeks to live. Even so, the whole family had showed up that Saturday night. The gathering wasn’t morbidly valedictory. We had an impromptu party, with Wil at the centre of it all, propped up in bed, knocking back brandy, chatting and laughing with all those she cherished most. It was as if her dementia had vanished.
By midnight, some of the relatives had made their way home. It was time to prepare the house for sleep. This is when Mum had a seizure. The fit was dramatic, a sudden implosion of energy that frightened her, and alarmed me and my sisters. Although scared, we were all very calm, talking to Mum, telling her how much we loved her, and trying to soothe her – to make the course of dying less painful. I think it was then that we were at our weakest. The process of death had been triggered and none of us was quite sure what our reaction should be. We phoned for the out-of-hours doctor.
The doctor arrived quickly, although it was nearly 1am. He was compassionate and frank in his conversations with Mum and us. He said there wasn’t much he could do other than call for an ambulance. The offer was politely declined and he didn’t force the subject – an ambulance couldn’t help Mum’s situation that much.
A doctor’s approval
But his presence and kindness were hugely beneficial. He had tacitly given us the green light to look after Mum. His unspoken approval gave us the confidence to sit up and face the long dark hours that never seem to end.
Waiting for Mum to die was a strange sensation. Vast waves of emotion were capped as we tried to reassure the woman who had been central to all of our lives that she was safe and everything would be all right. These words seem so thin now, but at the time they seemed so right. Mum complained of stomach pain, and we called out the doctor again at 5am. He recommended a strong dose of morphine to be taken orally, and a back-up of a weaker drip-fed solution.
Since Harold Shipman, doctors are wary about the use of opiates, but as our GP explained, it would relieve the pain, and although it could hasten the terminal stage, it was not the same as euthanasia. Mum’s case was the perfect example of this. The effects of the drug were described carefully to us all, including Mum, before the doctor handed an opened phial to my sister. She gently brought the liquid to Mum’s mouth and she bit down hard on it, sucking out every last drop.
I’m convinced Wil understood what was happening – and even more so by her willingness to gulp down the morphine. We were all prepared for what would happen next – Wil would slip quietly into a coma. Three more phials were placed on the dressing table to be administered should we feel them necessary. Then the doctor left us to spend what remaining time we had with Mum.
Now that those painful and intense hours are over, I’d say Mum had the best possible death. But helping someone die at home is an experience many of us have never come across.
The mechanics of dealing with the dying are overwhelming. What exactly are we supposed to do? Feelings of helplessness and impotence are mixed up with the practicalities of the situation. Friends who have been with their parents in similar situations have expressed similar doubts and notions of inadequacy. The way we dealt with Mum dying was instinctive. Yet being there and seeing her final moments has helped demystify and normalise something that is usually hidden in our society.
The Government recently announced an initiative to encourage us all to be better prepared for death. Studies show that two-thirds of us would prefer to die in familiar surroundings – yet most people die in a hospital bed; 2 0per cent in a care home; four per cent in a hospice; and less than a fifth at home.
To help change this, £286 million has been allotted by the Goverment over three years to pay for 24-hour rapid response teams and round-the-clock support based on the Marie Curie Cancer Care Charity’s Delivering Choice programme. But getting the country to look at how its citizens die is not easy as death is still very much a taboo subject.
As psychologist Dorothy Rowe says: ‘People don’t want to confront death in personal terms. They want to believe that everything comes out well in the end: if you’re sick, you get better.’ Such optimism clumsily papers over the one inevitable element of life. Perhaps this is due to ignorance. We don’t know that much about death and dying, and are afraid of it. Dr Rowe agrees: ‘People need to talk about death. If you’re able to accept it, it ceases to be so terrible.’ As someone who’s witnessed death at home, I think the opportunity should be there for everyone. And being there with Mum has helped me deal with my grief.
We’re all scared of the unknown. The best we can do is be more open and try not to be afraid.