A living nightmare

Reliance on the system is not enough: Frances MacGuire gives a personal account of her mum’s struggle with dementia and a crumbling NHS

Like glacial retreat, it started slowly, barely perceptible. Little things: letters home with the address slightly out, increased irritation offset by disinhibition, vague money worries. Then the time she waited in the wrong restaurant to celebrate my brother’s 50th; the running out of petrol (always explained away); a visit for Mother’s Day at our place only to find she’d invited friends to her house. They had travelled eight hours to find no-one home.

But it was when the police called me at work that I finally accepted things were wrong. With my heart in my boots, I waited for the worst. But she’d been found in a pub, not a car crash, though dazed and confused with her two dogs. She’d abandoned her car, the tank dry, and she had no money on her.

dementia jill macguire
Jill MacGuire

Alarm bells were ringing and then a fall and a broken leg. Just a freakin’ broken leg and our lives went into freefall.

Surgery and a short hospital admission saw her discharged home alone with a Zimmer-frame but no social support. She’d refused it. She’d bloody refused it. I begged and cajoled the relevant services and eventually secured an emergency support package consisting of three half-hour visits a day to prepare meals. It was still down to me to ensure the fridge and cupboards were full. I lived six hours away with two young children and a demanding job. She lived on the first floor of a two-storey house and wasn’t able to greet the delivery man, never mind unpack the shopping and sort it out.

She struggled with heating up ready-made meals and didn’t know when she needed the toilet. It’s called incontinence. Then a panicky phone call; she was in extreme pain. She’d called the GP but he didn’t come. Turned out he’d been knocking on the door but she was deaf and missed him. Her hearing aids had been mangled in some forgotten incident.

Over the next couple of weeks she deteriorated. A proud, strong, independent woman, she hated having carers. If I’d have known how things were going to unfold I’d have taken unpaid leave to look after her or even quit my job. But I have young children. So much for crystal balls.

I was desperately worried; the glacier morphed into the tip of the iceberg. I uncovered serious debts, unpaid fines and her house was about to be re-possessed. Her friends were fed up with bouncing cheques. My brother visited and called the GP who decided she should return to hospital. My brother took her in because the ambulance never turned up. She left her home of 20 years – her father’s home for 20 years before that, designed by him – for the last time.

“Complex health needs”

A barrage of tests showed she had vascular dementia, hepatic encephalopathy and her diabetes was off the scale. High blood pressure too which may have underlain the dementia. She’d been very overweight in middle age. The medics call it complex health needs, I call it a living nightmare.

She’d also been self-medicating with alcohol, a possible cause of the shadow on her liver (being overweight was the other one). She wasn’t a big drinker but a regular one. Alcohol creeps up on you sooner than you’d think.

She was desperately miserable in hospital and told us to put her head in a bucket. I asked the hospital could she be moved near me; that way I could visit her daily while being there for my family and keep my job. A request that fell on deaf ears…repeatedly. So I trudged back and forth, juggling work and family, getting more and more exhausted, dispirited and disenchanted with the health care system.

“Death is not like in ER”

At the same time my divorcee dad was dying from oesophageal and lung cancers. He could manage his care needs though because he didn’t have to deal with dementia.

Eventually the Consultant agreed to move my mother to a nursing home near me. I asked him how long he thought she had. I didn’t want to put her through the long journey if she had less than six months. Prognosis of death, I now know, is a very inexact science. Don’t rely on it for planning purposes; death is not like in ER. He gave her one to two years. Two months later she was dead, six weeks after my father. She’d had three further hospital admissions and, then, with her liver failing, she slipped into a coma. I will never forget her last smile. It took 10 days for her to die and it was anything but peaceful.

Jill MacGuire wasn’t just my mother. My mother was the first Professor of Nursing for Wales, a nurse and a ward sister specialising in elderly care. With my permission, she gave my Blue Peter badge (from the British children’s TV programme) to a dying patient, for bravery. She cared. She was smart, sassy, irreverent, kind, loving and generous.  She was also hopeless with money and hard to help. At her funeral, the church was packed.

“The system broke my heart, body and spirit”

Age wearied her though she was only 76. Dementia diminished her. Liver disease destroyed her. It felt like the health care system – which she’d trained and worked in, led and lived for – abandoned her. The manner of her death – not death itself – coupled with battling the system broke my heart, body and spirit. Dementia kills.

Do I wish I’d looked after my mum myself instead of relying on the system? Yes. Did I have the skills? I doubt it. A tidal wave of dementia is about to hit our ageing population. We are not prepared.