EVE SIMMONS: How to get your life back when you’ve given up everything to look after dying loved one

A couple of months ago my mum Michele had a minor operation. It wasn’t anything serious – just the correction of muscle weakness on her left eye. But it involved a heavy sedation and affected her sight. Barely 60, she’s a sharp, self-assured woman. A little anaesthetic was no big deal, she assured me. Yet when I met her at the hospital post-procedure, she was uncharacteristically feeble. ‘You’ll have to take your daughter’s arm to walk to the toilet,’ instructed the nurse.  

Mum followed instructions, grudgingly.

Later, as I bundled her out of the taxi and into her house, a painful thought occurred. Soon I’d have to leave her – and she’d be all alone.

I’ve written in these pages before about the death of my father Jeff when I was 12. It left Mum, at just 48, a widow. For six years before that she’d been thrust into a life she’d never planned for, as my father battled a rare and debilitating form of cancer.

Eve Simmons with her mother, Michelle, at home. It’s clear that despite appearances, she never found the answer to the all-important question after the death of a partner: what’s next?

Forced to leave her senior role in publishing to care for him, the colleagues she’d left behind were making vital contacts, climbing the career ladder and being offered 30 per cent pay rises in the years to come. My mother, on the other hand, was schlepping Dad to radiotherapy and chemo sessions, concocting creamy puddings to keep his energy levels up and attempting to slot in some freelance work.

Much of her ingenuity went into protecting my brother Sam and me from the ghastly realities of Dad’s illness, keeping our childhood ‘normal’ for as long as possible.

Since Dad died, she’s tried to fill the carer gap with various job roles, visiting friends abroad and voluntary work. Most of the time, I have to trust that she’s fine, mainly because, as a 28-year-old woman with my own partner and career, I have to. But sometimes, the bleak reminders of the reality of our family tragedy – and its endless repercussions – are unavoidable. Seeing Mum forced to sell our family home five years ago, because it was too big and expensive to run on her own, was one.

More recently I watched as, still barely conscious after her eye op, she stockpiled a mound of pills, water bottles and snacks on top of her duvet, before shooing me away. ‘There’s no one here to bring anything up to me,’ she said, candidly.

It’s clear that despite appearances, she has never found the answer to the all-important question after the death of a partner: what’s next?

In a bid to help her – and the two million other Britons who every year find themselves in a similar position – this newspaper called on readers for advice.

In November, our resident GP Dr Ellie Cannon asked readers to get in touch about how to cope after the loss of a terminally ill life partner. Hundreds of you did, and here we’ve gathered some of your best suggestions and advice.

There are also some tips of my own, and from qualified experts. We hope that sharing them will make the next, bewildering chapter that little bit less scary.

It’s never too soon to start living again

When I asked Mum if there’s something she wished she’d done differently, she replied: ‘I should have thrown myself into work and meeting new people sooner, rather than later. But at the time, I had two kids who needed me around and they mattered more.’

Of course it wasn’t long after Dad died that Sam and I were at university, leaving Mum home alone.

Spending time on your own, she says, gives your confidence a knock. ‘Then you get used to your own company and become a bit apprehensive of going into a room of people you don’t know, or trying new things,’ she says.

Planning a life together: Eve's parents, Jeff and Michele, at their engagement party in 1981

Planning a life together: Eve’s parents, Jeff and Michele, at their engagement party in 1981

Yet studies show that diving head first into the thing you’re most scared of is the most effective way to conquer social anxiety.

So try going to local clubs – found on noticeboards in churches or local shops – with a good friend to ease you in.

And there’s no such thing as ‘too quick’, say the experts. Dr Paula Smith, a health psychologist with an interest in carers, says: ‘The latest research about grief shows that immersing yourself in normal life soon afterwards is a positive thing. It gives people a break from being immersed in the sadness.

‘You can’t talk about it all the time, it becomes overwhelming. Even going back to work can bring you back into your life.’

For women of working age, organisations such as the Carer’s Trust, local hospices and Citizens Advice can offer advice about how to get back on to the career ladder, step by step.

You don’t have to find a new partner

People often ask me: ‘Why hasn’t your mum remarried?’ Finding another partner seems like an obvious next step and I’ve often hoped Mum would, for my own peace of mind. Yet despite countless set-ups and a few short relationships, it never happened.

Tackle that ‘death admin’ early

One of the most common difficulties in the immediate aftermath of losing a loved one is sorting through the endless reams of so-called ‘death admin’.

The easiest way to tackle it? Do it in advance.

Emma Aldridge, from Carers UK, says: ‘It’s not always possible, but if you can, prepare wills, power of attorneys and third-party financial agreements before the inevitable. It then leaves space for you to just focus on grieving when the worst does happen.’

Your local branch of the charity Age UK can help, as can online advice services such as moneysavingexpert.com, the goodgrieftrust.org and the NHS website.

For legal aid, contact the Law Society. Citizens Advice can also provide a case worker to work alongside you and tell you about benefits you might be entitled to, such as a widow’s pension.

I’ll always remember the large, lever-arch folder, bursting with papers, on the shelf in my mum’s home office.

The label on the spine read: ‘What Michele Did Next.’

Practical as always, my father had detailed specific instructions for the logistics, meaning she didn’t have to turn to good old Google.

Some people aren’t as lucky.

‘I already met the person that I wanted to spend my life with and he’s not here any more,’ she says.

‘In the end, no one else has compared to him.’

Mum’s words are echoed in several readers’ letters.

One, a man in his 40s who lost his wife to brain cancer five years ago, wrote of the pain he felt without his ‘dream girl’.

Others said they couldn’t even fathom the idea of letting another person into the life they shared with their beloved.

And experts agree that a new partner isn’t always the answer. ‘There’s often a sense that three people are in the relationship,’ says Dr John Troyer, Director of the Centre for Death and Society at the University of Bath.

‘Just because a person is dead doesn’t mean you don’t still have a relationship with them. It can be tricky to know how much is an appropriate amount to talk about them, and new partners feel threatened. For some people it feels right to meet someone else, for others it doesn’t. Both standpoints are equally valid and normal.’

Routine is your friend in times of grief

The most popular tip from readers was to take up a new activity. Gardening, dog walking and dance classes were popular choices. But what you do doesn’t matter, as long as it provides structure.

‘People will be used to a routine that revolves around that loved one,’ says Dr Smith. ‘So when the person dies and there’s suddenly no routine, it feels like another loss.

‘Having a rough schedule to fall back on can be comforting.’

This can be anything from taking the kids or grandkids to school, to going to a weekly Zumba class.

My mum busied herself with organising my 13th birthday party within a week of Dad’s death.

She said: ‘I threw myself into looking after everyone because, first, I didn’t have a choice, but it stopped me thinking about how awful everything was. I just had to get on with it. That’s been my philosophy all along.’

Keep up friendships before it’s too late

When you’re caring for a sick loved one, picking up the phone to ask about a friend’s recent holiday is not a priority. But keeping links with a wider social network – however vague – will be invaluable a few years down the line.

Says Andy Langford from bereavement charity Cruse Bereavement Care: ‘Regular contact with friends, family or colleagues – even if it’s just one phone call every month – acts as a stepping stone to the outside world.

Keeping links with a wider social network – however vague – will be invaluable a few years down the line (file photo)

Keeping links with a wider social network – however vague – will be invaluable a few years down the line (file photo)

‘This proves especially important months after the bereavement when the immediate influx of support has dried up.’

My parents’ oldest friends were constant rocks throughout my dad’s illness – and beyond – and it’s a relief to know they are at end of the phone, should Mum need them.

Caring organisations also present the possibility of new friendships, with people in similar situations. Local branches of Carer’s UK, The Carer’s Trust and Age UK offer online forums, events and away days.

You can keep on caring… as a career  

Reader Sara Challice from Twickenham, South-West London, found solace in continuing her caring role, professionally.

Sara, 48, cared for her husband Neal for 13 years before he died of brain cancer in 2015.

A former graphic designer, Sara now dedicates much of her life to it. ‘After Neal died I couldn’t bear the thought of a meaningless job or mundane office chit-chat.

‘So I packed in my job in the City and now I work from home and run a support website for carers. In April, I’m publishing a book about caring.’

Emma Aldridge, a support worker from the charity Carers UK, says Sara’s story is a common one. ‘Some people feel very connected to their caring role and want to continue it,’ she says.

‘And you can’t underestimate the skills built while caring for someone, such as negotiating with authorities and juggling lots of plates. They look impressive on a CV.’

What’s the difference… between COPD and emphysema?

Chronic obstructive pulmonary disease (COPD) is an umbrella term for a group of lung conditions that cause breathing difficulties. COPD occurs when the lungs become inflamed, damaged and narrowed, often due to smoking. An estimated two million Britons have the condition.

Emphysema is one type of COPD. The lungs are made up of millions of tiny air sacs called alveoli. In people with emphysema, these air sacs are weakened, reducing the amount of oxygen that reaches the bloodstream and causing breathlessness, coughing and fatigue.

It’s ok to keep things that hold memories

I’ve often worried that Mum’s reluctance to get rid of Dad-related things – every birthday and anniversary card, or notes he’d written while in the hospice – could leave her ‘stuck’ in the past.

A tatty jumper he often wore to his chemotherapy appointments, remains in the guest-room cupboard. But clinging on to objects is not unhealthy. Dr Troyer says: ‘You can move on and still create a space where you connect with that person – be it through looking at their clothes or going to their favourite restaurant.

‘Some celebrate a deceased person’s birthday every year. What’s more concerning is when people think it’s weird if they don’t get rid of everything or get over it.’

Dr Troyer advises carving out a certain time in the day or week to enjoy those memories.

Pets can provide company and comfort

As silly as it might sound, our family cat, Ernie, was a huge source of comfort to Mum in the years after Dad’s death.

Mainly because, unlike us kids, he didn’t shout or moan at her.

She said: ‘Just the presence of having someone or something else in the house was welcome. It eases the quiet, which can be disconcerting if you’re not used to it.’

Many readers wrote that coming home to a happy dog, as opposed to an empty house, eased their sense of loneliness (file photo)

Many readers wrote that coming home to a happy dog, as opposed to an empty house, eased their sense of loneliness (file photo)

Many readers wrote that coming home to a happy dog, as opposed to an empty house, eased their sense of loneliness. At times when they felt their most miserable – during long, lonely nights – an animal at the foot of the bed gave them something to smile about.

Do something that’s ‘just not you’ 

Some readers adopted a different identity altogether, doing things they may not have considered when they were with their partner.

One discovered a hidden painting talent, while another conquered her fear of cruises. Another threw herself into her local University of the Third Age – which offer a multitude of activities for over-60s – and made friends for life.

Dr Smith says: ‘Being free from the caring role gives you an opportunity to be someone completely different.’

For Sara Challice, her husband’s death was a chance to finally go on the trip of the lifetime she’d always dreamed of. ‘I was a caged bird trapped in the house for so many years,’ she says. ‘I wanted to travel, but I was always too scared to go alone. Suddenly I thought: damn it, I’m going to do it!’ 

Whatever you do to cope, don’t feel guilty 

I asked Sara if she ever felt guilty beginning her future without her late husband, Neal. ‘No, never,’ she said. ‘He wouldn’t want me sitting at home on antidepressants for the rest of my life. He’d want me to find joy and happiness.’ 

It’s easier for some than others.

My mum often feels guilty, not for moving on, but for failing to give my brother and me the perfect, happy upbringing she’d always imagined. But I wouldn’t change anything. I turned out all right.

And whether Mum jets off to exotic lands, meets handsome strangers, or sits on her sofa watching TV, it doesn’t matter much.

Whatever brings her happiness is enough for me. At this point, I think the universe owes her some.

What to read, watch and do

READ

Dear Life: A Doctor’s Story Of Love And Loss

Palliative care specialist Dr Rachel Clarke explores how we should approach the end of life – and shares her own emotional journey with her dying father.

£16.99, Little, Brown Book Group

WATCH

Losing It: Our Mental Health Emergency (Episode 3)

An enlightening documentary series following NHS frontline staff, below, at Nottinghamshire Healthcare – one of the UK’s largest mental health trusts – as they deal with people in crisis.

Tuesday, 10pm, Channel 4

DO

The Man Talk

Suicide is the biggest killer of young men. London arts centre Rich Mix is bringing together six male speakers, including athlete Theo Campbell, to talk openly about life’s struggles.

Thursday, 8pm, Rich Mix, East London. £12, richmix.org.uk

From left to right: Richard Marsh, Dr Christina Kelly and Dr Amy Au-Yong, in the Losing It: Our Mental Health Emergency documentary series

From left to right: Richard Marsh, Dr Christina Kelly and Dr Amy Au-Yong, in the Losing It: Our Mental Health Emergency documentary series