The moment I lost it when caring for my mother came after she cried out for me to take her to the lavatory. For the 47th time. In one long, exhausting night. It wasn’t the fatigue of easing her from her bed, nor the slow walk to the bathroom, nor the awkwardness of positioning her, nor guiding her back to her bed. What made me crack was that I knew that she’d insist on reciting her long bedtime prayer – for the 47th time. Naturally, I rose from my bed and took her yet again, feeling shame for snapping at her.

That was 18 months on from the decision by me and my sisters to care for my mum at her home in South London after her illness had been diagnosed: vascular dementia, a disease akin to Alzheimer’s.

There was no question of putting her into a state-run home or hospital and, of course, private care was beyond us. Her hospital consultant said of my home-care plan: “You might want to think again about that.”

He knew – as did the reader in last week’s Family Secrets piece – the monumental effort it requires to care for an elderly, infirm woman at home. Then we had no idea.

So began our journey into neurological disease, incapacity, memory loss and the potential eclipse of my mother’s identity. A world of catheters and commodes, bedbaths and antibiotics, permanent tension and tiredness. It was to last for four years.

My mother lost the ability to walk two years after the original diagnosis. We managed to get an electronic bed and put it in the living room – to keep her at the centre of family life. The sister with whom my mother lived tended her during the day with carers and nurses calling to assist. We each did shifts sleeping next to her. On Christmas Eve 2001 I was told by a specialist that my mother had days, possibly hours, left to live. I waited until Christmas Day was over, summoned all her children and grandchildren to the house and gave them the news. All we could do was carry on day by day. So we did, reenergised by a fear of time running out. But my mother was working to her own time-table. She survived for another 11 months.

As hard and exhausting as that period was, it became, in a way, the best time for me. Caring for my mother helped to prepare me for losing her. It gave me (and all my family) a way to do something for her.

I sat for hours by her bed (we all did) feeding, tending and chatting to her. It brought me back to the nearness of my boyhood: the feel of her hair, the amazing smoothness of her 78-year-old skin and her fragrance.

Fluid on her lungs would build up and our admirable family GP, Dr Abbas Virji, would give her antibiotics. As they became less effective, he asked if we wanted to stop them and let nature take its course; meaning allow her to die. We took a vote: it was an even split, so we carried on with the drugs.

Sometimes I’d see fear and incomprehension in my mother’s eyes and that would chill me. It brought warnings from medics that we should prepare for when she no longer knew us. That time, thankfully, never came. I believe our care kept the ultimate ravages of dementia at bay. The experts might scoff at the idea, that the manner in which we tended her helped to slow the passage of a neurological disease. But she always knew who we were until the end.

I believe it was the care – and her stoical nature. With my mother it was always a stoicism without fatalism. Endure but do not give in. When modernity and medicine have nothing to offer what else is there? But, as our reader illustrated, the stoic tradition is no longer fashionable; it’s now replaced by a culture of complaint. I have no idea of the life our reader had with her mother. Are her bitter words just a cry of exhaustion – as my snapping at my mum was? Or intense rancour at a life interrupted, a life dedicated to a solipsism that finds children a messy imposition? Could I, like her, have cared for my mother on my own? I know I would have.

Maybe you do get back only what you put in. If that is the case then what we did for our mother was little compared with what she did for us. On the last night of her life, at 3am, with us all gathered at her bed, it felt as if an unwritten contract had been kept between loving mother and loving children and grandchildren. Yes, caring for her took a toll: a depressive illness for one of us, fractured relationships, insomnia, exhaustion and numbness at the end. But all her family, knowing the price exacted, would care for her in the same way again.

Tomorrow is the fifth anniversary of my mother’s death. I still resent that she is no longer alive.

How to get help

A carer
Everyone is entitled to an assessment from the council, which will assess your financial, practical and emotional needs based on criteria such as how many hours you care for, to see if you can receive help from carers, and if so, how much. There are different types of help available for both carer and cared-for. Contact your local council to organise an assessment.

A care home
The cared-for person is also entitled to an assessment by social services, who may suggest putting him or her in a care home. They will pay some or all of the cost, depending on the person’s income and savings. Top-up fees may be required for your home of choice. Contact your local council for an assessment.

Funding
You may be entitled to a Carer’s Allowance (check that this does not preclude the cared-for person from other benefits ). The cared-for person can also apply to the Social Fund – a government-funded body that provides interest-free loans and grants (contact your local Job Centre Plus for more information), and to charities such as Counsel and Care (see below). It’s important to seek financial advice from a specialist long-term care adviser, such as the Nursing Home Fees Agency (hsbcpensions.co.uk/nhfa/pages/index.asp, 0800 998833) or Saga (saga.co.uk/finance/spf/ltc/index2.asp, 0800 0566101)

More information
Go to counselandcare.org.uk for comprehensive factsheets and more charities information, or to carersuk.org, which has links to trusts and advice websites.

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