How I helped my mum to die

They were never close - but then Jane agreed to help her ailing mother starve herself to death. And that shocking pact finally brought them together...

There is a photograph taken on July 4, 2003. It shows my formerly proud mother, Estelle, now a slack-jawed, tilted-off-to-one-side broken puppet in a wheelchair, in the nursing home where she then lived.

Her eyes are vacant, her skin greyish, her mouth half open, and her clothes are all but falling off her and carelessly chosen. Her hair is plastered to her head, unkempt.

It wasn’t that she was ill-cared for, but rather that she was not quite there: compliant about the picture-taking for our sakes, but eager to be returned to her bed and be left alone.

Beyond hope: Shortly after this photograph was taken of Jane and her mother Estelle, she told her daughter she was ready to die

Beyond hope: Shortly after this photograph was taken of Jane and her mother Estelle, she told her daughter she was ready to die

In that photo, with me beside her cheek to cheek, I’m smiling so hard it’s like my face is going to break in two; as if all I had to do was pretend we were having fun, and we would be.

Soon after that photograph was taken, my 88-year-old mother — who was, by then, paralysed, incontinent and unable to speak following a series of small strokes — decided that she’d had enough. She’d been telling me for weeks, one letter at a time on the cardboard alphabet chart I’d made, that she was ready to die.

We had already discussed the possibility of her refusing food and water — a process known as VSED (Voluntary Stopping of Eating and Drinking), which allows the patient to refuse food and drink while the doctor prescribes pain relief and sedation, if necessary, to relieve unpleasant symptoms. (In both America and the UK, a doctor’s legal duty is to relieve suffering rather than to force the patient to drink).

This possibility now dominated our conversations. I even read to her from books, at her request, that described this manner of dying. It didn’t sound awful. Some people suffered no more than a dry mouth, the literature explained. I would stay with her the whole time.


'My mother was a realist. She neither expected to live for ever, nor wanted to. Now, humiliated by her helplessness, she wanted nothing so much as a dignified way to die'

By then I knew the staff at this nursing home where my mother had spent the past two years: not just their names and titles, but their hearts and souls. Unless it was illegal, they wouldn’t stop us, and I trusted they would do all they could to guide us through the process.

And what better proof of that than their suggestion, months earlier, that she switch to ‘comfort care’ (aimed at relieving symptoms, enhancing the quality of remaining life, and easing the dying process) and tell them what she did and didn’t want in the way of treatment.

When I described these rather clinical conversations to friends, some judged me harshly. Others fell eerily silent, and still others were ambivalent but amazed.

‘You let her do that?’ one asked, when my mother decided to stop food and hydration. I mumbled that it wasn’t up to me, and nor should it be, but I was both stung by the implied rebuke and concerned that she would keep her own mother, whom I’d known since childhood, alive at all costs.

Another friend’s mother, who had end-stage Alzheimer’s, no longer recognised her children and had already spent ten years in a nursing home. Eventually she would forget how to eat or drink, so others would have to spoon-feed her and hold a cup to her lips.

Had my friend and her two siblings even discussed whether this made sense? I didn’t ask, and my friend didn’t say.

So why did my mother and I have these difficult conversations so effortlessly? Could it be because we’d always had an arm’s-length relationship?

Dealing with her grief: Jane Gross has written a book about her experience with her dying mother

Dealing with her grief: Jane Gross has written a book about her experience with her dying mother

Ours was never a very close family. My mother’s childhood was difficult: she left home to escape a stepmother she had never warmed to, after her own mother, whom she barely remembered, had died when she was still a toddler.

Or maybe these conversations came easily because my mother was a woman with a fierce intelligence, a strong will, a stoic nature, and no patience for sentimentality.

The day I left for university, with my father driving me, we had not completely backed out of the driveway before she had filled the rubbish bins outside the house with my old school uniforms, boxes of the poems I had written, and other cherished possessions — now just clutter to be cleared away.

More than 30 years later, in one nursing home conversation, I asked her about her three half and stepbrothers, whom I only vaguely knew, although two of them lived nearby when my younger brother Michael and I were children. I struggled to remember their wives’ names, and am not sure I ever met some of their children, my cousins.

My mother had long ago lost track of them, she said, and claimed not to know if they were alive or dead. ‘Why do you care?’ she asked. She seemed to find my curiosity unnatural.


'As she faced the end, her clear head and courage were truly something to behold. I wished I'd appreciated it earlier'

So I won’t pretend that my mother was a demonstrative, coochy-coochy-coo kind of person. She would recoil if I tried to hug her, and if I ended a phone call with the words ‘I love you’, her reply was never more than ‘Mmmm’.

But amid the mortifications of old age, her clear head and courage were something to behold, and during that time I found myself wishing that I had understood and appreciated her strength sooner.

Widowed at 58 and proud of her self-sufficiency, my mother had asked little of Michael and me throughout our adulthood, and mostly took matters into her own hands.

She told us when it was time for her to stop driving, sell her house, and move to a more supported environment. She worked out which sheltered accommodation would suit her best, what size flat she wanted, and which furniture to leave behind.

Taking no chances, she hired a financial planner once she got there to guide the process. She made a living will without any prodding.

My mother was a realist. She neither expected to live for ever, nor wanted to. Now, humiliated by her helplessness, she wanted nothing so much as a dignified way to die.

And so, as mother’s health slowly worsened, I counted on her to tell me when she was ready to go, and she counted on me to help her find a way out.

In the privacy of her room, without nursing home staff or my brother there to hear us, we regularly discussed how trapped she felt. Her heart and lungs were strong; she didn’t have cancer; she wasn’t even dying, using a disease-based definition. So here we were, my mother and I, wishing that she were terminally ill and feeling a bit creepy about it.

Distant: A young Jane with her mother, she never felt close to her growing up

Distant: A young Jane with her mother, she never felt close to her growing up

‘We treat our pets better than we treat people,’ she repeatedly said to me during those conversations.

There were jokes, too. No matter how bad things got, my mother never lost her sense of humour — always a bit black for some people’s taste, but uniformly appreciated by the nursing home staff.

She didn’t whine about her situation, and she didn’t want you whining about yours.

For someone of her nature, that long, slow, mortifying decline was unacceptable. And ignoring the inevitable wouldn’t help. My mother was one of those rare birds who wanted the topic of death on the table, right from the start. And I agreed with her and found myself assuming the role of trusty second-in-command.

The days following my mother’s decision passed, unsurprisingly, in a blur.
The very first thing I did after she spelt out the words N-O-W on that cardboard alphabet chart was ask that the full nursing team at the home, especially her social worker and a psychiatrist, talk to her when I was not in the room.

There was no pretending I hadn’t been part of her decision, and had arguably even encouraged it. Many experts say that old people often choose to end their lives, or say they don’t want them extended, not because of their own genuine wishes, but to spare their children trouble and expense. We needed to be certain that my mother was doing this for herself, not for me.

The private conversation was held and satisfied the nursing home staff: I was offered a reclining chair in her room, or an apartment situated in the grounds and reserved for visiting relatives, so I could be with her, or very close by, for the duration.


WHO KNEW?

Ninety-four per cent of nurses reported the deaths of patients refusing food and drink as peaceful, a U.S. study found

I spent one night walking the floors of the unfamiliar apartment, with no telephone or mobile signal, which frightened me.

Then, after a few nights in the chair, I realised that I would not get through this without some time alone and some sleep in my own bed. I stayed each day with my mother from 8am to 8pm, then went back to my home while a nurse watched over her.

Staff told us my mother’s death would take a week, and probably less.

It turned out they had guessed this, based on cases they were familiar with, when people closer to the end and frailer died this way, not by design but during end-stage cancer or Alzheimer’s, which causes loss of interest, ability, or memory of how to eat or drink.

Depending on the health (and perhaps stubbornness) of the person involved, VSED can in fact last as long as three weeks, according to medical textbooks. If I’d known that beforehand, it would have prepared me better psychologically, and allowed me to pace myself emotionally.

As the days passed, I watched the hands of the clock from my perch in a corner of my mother’s room. They seemed to have stopped moving. She soon became a curiosity, as staff stood in her doorway to watch the old lady who would not die.

I accused staff of sneaking her ice cubes when my back was turned. I was twitching with impatience. I wanted my mother to hurry up and die, and was ashamed to admit it.

My impatience, the nursing home’s Rabbi assured me, was understandable. Even without his confirmation, I knew that, hard as it was, there was no act more loving than to accept her decision, to be present in the fullest sense of the word, and to bear witness to her passing.

Determined till the end: Estelle as a young woman

Determined till the end: Estelle as a young woman

Until the last two or three days, she would drift in and out of consciousness. Since hearing is the last sense to go, I talked to her, played music, and sometimes read aloud from whatever I was reading. I believe she heard me and was as grateful for my presence, as I was to be with her, during this time.

On July 23, 2003, in the early evening, the nurses finally saw the tell-tale signs of approaching death. My mother’s feet were cold to the touch. Her fingers picked at the bed covers. That was the very warning she had told me about from her own nursing days.

Nobody understood what it meant, she had said, and doctors denied that it even happened or, if it did, that it meant anything. But nurses knew better from being at the bedside of the dying, my mother had said, and they were rarely, if ever, wrong. On the 13th day without food or water, my mother finally got her wish.

Her funeral was held on a steamy July day. The Rabbi’s eulogy was funny and made her sound real, not nice or easy to get along with, but rather prickly and irreverent —  totally her own person, not concerned whether anyone liked her much.

In my own eulogy, I remained dry-eyed and kept within the two-minute limit I’d set for myself. Maybe it seemed cold to the tiny gathering of mourners, but my goal was self-control, honesty, dignity, and some measure of eloquence.

My brother Michael spoke next, without notes, fighting back tears and losing that battle. Although also a writer, he didn’t seem concerned whether his words were highly polished. He was real and loving and brief; very brief. My sister-in-law didn’t speak but wept openly.

Afterwards, there was no post-funeral family gathering. So at the end of this exhausting day, I swam long, cool laps at the village pool and then went home to sleep. I hung around the house all weekend, mindlessly gardening.

On Monday, I returned to work as a journalist, sooner than I would have liked but dry-eyed and efficient. I wanted to write about the intersection of aged parents and their adult children, and I have.

What happened after my mother’s death didn’t have a neat beginning and won’t have a neat end.

In between, however, there have been some standout moments: the day of the funeral; the day my brother and I divided up my mother’s meagre possessions; the day I gave gifts of some of my mother’s cherished mementos to the people who had lovingly cared for her, pretending my choices were actually hers.

Then there was the first holiday Michael and I spent together because we actually wanted to; the day her tombstone was unveiled, just the two of us there and no religious ceremony; the informal resumption of our telephone calls once we’d fled our forced collaboration and come back together, by choice, as loving siblings and trusted friends; the memorial candles I light for my mother every year; the pull I feel to the nursing home on special occasions like her birthday.

And sometimes I think about losing my mother just when I found her, the times we could have enjoyed, and the terrible waste. I saw a glimmer of what we could have been if we’d paid attention to each other sooner.

Then I can hear her saying: ‘What are you making such a big deal about, Jane?’ I’d rather she say: ‘Oh, sweetheart, better late than never’ — but ‘Oh, sweetheart’ wasn’t part of my mother’s vocabulary, as it isn’t part of my brother’s.

Neither of them has to say ‘better late than never’, because I already know it’s true.

Extracted from A Bittersweet Season by Jane Gross, © 2011, published by Alfred A. Knopf

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