In Dementia Awareness Week, journalist Pam Pearce remembers the time when her father struggled to live at home.

It is 3am and my father is getting out of bed for the third time that night.

Our night-time carer playing computer games on his phone on the settee in the living room knows this straight away because he hears the Big Ben chimes.

This incongruous sound - which brings great amusement to the family - is the one the sensor mat makes when my dad's size 11 feet hit it.

My dad is 94 and has dementia - and we are in the final weeks of desperately trying to keep him living in his Nottingham home of 63 years.

This is the Mapperley house where we laughed until we cried when he put his foot through the living room ceiling while shifting some wood in the loft. The house where he was the talk of our street when he saved up to get an early colour TV the size of a small car.

The carer moves swiftly to coax dad back to his single bed in the dining room. He can no longer manage the narrow and steep stairs of the house built in 1910 and we are worried about him falling. He and mum have always stubbornly refused to get a stair lift.

Dementia is on the rise (stock image)
Dementia is on the rise (stock image)

The room is like a hospital ward with the shelves packed with lotions, surgical gloves and wet wipes. So, to go along with his wishes, his family made up of his loving wife of 67 years, plus my brother, sister and I try our best to help him stay put.

Carers are now staying all night to deal with dad's nocturnal activities so we can get some much-needed sleep. There is a commode on hand too - surely the most depressing piece of furniture in any room.

I am sure my dad wiped my bottom when I was a baby so I am able to take a deep breath and do the same for him.

Sometimes you can tell he knows what is going on around him but sadly is unable to have the concentration to pick up and read a newspaper or watch TV any more.

Pam Pearce's father hallucinates, especially with orange things

As well as getting confused and struggling to communicate, his brain has slowed so can't take in the quick-fire dialogue on the telly or radio. He needs the subtitles on the TV because he is deaf, but can't read them quickly enough.

He is eating okay (thank goodness for cheesecake, his favourite). Getting him to drink is difficult but there is some urgency because every few weeks he gets an urinary tract infection.

The carers spot the signs - sudden aggression in a man who has always been gentle, mild-mannered and polite.

My mum remains stoical to having male carers sleeping in her home. "Have you seen their tattoos?" she asks with a smile.

Young man hand holding an elderly woman's hand

My dad hallucinates, starting with orange things. "Is that an orange on the fence there?" he asks. My head quickly swings round, fully expecting to see it because he seems so sure but no, it is just him seeing things again. "I'm not sure dad," I say, not wanting to contradict him.

Other times he looks at the ceiling and says "Look at that" and you really want to see something - a small fly, a mark, a stain. But you can't. Now and again my dad raises his arms and his hands gently brush something away in the space a few feet from his face.

In between are moments of clarity. "Did these come from the Co-op? he asks when we put some strawberries and ice cream in front of him. And he can look at me steadily with such an expression of love, it brings tears to my eyes.

Moving him from his chair to the commode takes two carers - or three members of the family because we simply don't have the experience of handling him. He has a walking frame but needs muscle power to get him to stand up.

We show him photos of his family, photo books prepared by my sister of their holidays to America and Europe. He looks for a while but then drifts away and loses interest.

Dementia
Dementia

And it is laughter which keeps us all going, as it always has throughout our family's life and times. Every day there was a situation which had us smiling - and dad laughed along with us.

Looking back, it was as much the loss of his balance and mobility which deteriorated as much as his loss of memory, self awareness and concentration.

He had had a few falls - out of bed and while making up the coal fire - and it was common to visit and see a fresh wound on his head, arm or hand. He spent many hours sat patiently in A&E at Nottingham's QMC.

It comes to the stage where we can no longer handle him at home, even with regular and excellent carer assistance. The stress on all of us, especially my sister who takes time off work in the last weeks before he moves to a care home, makes it tough.

We don't tell him he is off to a care home, we said he's going to stay in a posh hotel. His reply comes loud and clear. "That'll be nice."

Dementia Awareness Week 2018 runs from May 21 to 27.