Real stories

Supporting relatives with dementia – ‘I’ve seen the best and worst of care’

When Bob Broadbent saw a neighbour in Bradford struggling with dementia, it prompted a fear of losing control and being ridiculed.

Bob begged his granddaughter, Jaymain, ‘Please never let me get like that.’

When he became forgetful, his fear increased. ‘I’m losing it,’ he confided. Luckily, he and Jaymain couldn’t have been closer.

Jaymain Parkes, now 50, a school counsellor and therapist, says, ‘My grandad looked after my grandma until she died. He brought me up and looked after my children.

He did backbreaking work as a binman and coalman to support the family. He meant everything to me.

Memory loss

Jaymain had also begun to feel concerned. Bob was misplacing things, missing doctor’s appointments and forgetting to take tablets.

‘My grandad was the one who kept the world running, so this behaviour was significant.’

Bob’s GP referred him to the memory clinic. Even before the appointment, Jaymain started to notice letters and numbers missing when Bob wrote something down.

At a follow-up appointment, the doctor asked Bob if he wanted to know everything or for the news to be softened.

‘Grandad said he wanted to know everything. The doctor said he had a “really yucky disease called dementia”, specifically vascular dementia.’

Managing dementia care

Jaymain realised early on that she’d have to take an active role in Bob’s care and treatment.

After they’d agreed not to try one medication due to its side effects, Jaymain found it had been prescribed anyway. She got it removed.

Thankfully, they had met someone from Alzheimer’s Society at the memory clinic.

‘She gave us a booklet that contained information you might need at different stages, from making a living will to end-of-life decisions – things that hadn’t been on my radar.’

Then Jane Williams, a Society support worker, contacted them.

She helped me see I was an expert in Grandad’s life, and he was an expert on his own experience. 

’We knew best when it came to his rights, wants and needs. This gave me confidence.

‘I thought, “We’re living with this. What can we do to make life as good as possible?”

‘I bought a whiteboard and wrote all his activities on there, from Monday to Friday. This helped until the end of his life. I also bought a clock that said whether the time was morning or evening.

‘Jane told me that when someone repeatedly asks the same questions, that can be a sign of anxiety. I figured out with Grandad what his anxieties were.’

Dementia care professionals

Having confidence with healthcare professionals proved useful.

‘At one point, Grandad had a severe gut infection. He lost weight rapidly, wasn’t eating and was hallucinating.

‘In hospital they asked if he was “end of life”. I told them, “He was independent last week.”

They thought I was deranged! I was panicking, desperate for someone to listen to me.

‘Then I said to a consultant, “Please look at this video. This is my grandad in London, pushing around his great-great grandchild last week. This is not an end-of-life situation.”’

Mercifully, the consultant took notice and prescribed treatment. After this, Jaymain filmed and photographed Bob regularly to prove how well he was. 

Sadly, Bob didn’t survive the Covid pandemic. Although dementia was given as the reason for his death, Jaymain believes he died of an untreated infection because the right care wasn’t on hand.

‘Covid was horrific, and now it’s just back to business as usual,’ she says.

We fought so hard until then, and he had an amazing life.

‘We got him his first passport at 78, and we had holidays all over. We went to Andalucia, staying in a villa on the mountain. We saw history in Istanbul. He went on a camel ride in Lanzarote.

‘In London we went to see the sights – he loved Madame Tussauds. He went to Blackpool, Scotland and Wales. We did everything.’

Caring for another relative

It wasn’t long before Jaymain began to worry that dementia may be affecting another family member.

Jaymain’s Auntie Irene had been born three months premature in 1958, weighing just 2lbs.

Astonishingly she survived, but with a learning disability. For many years, Irene lived her life independently. She was known in her community and her local shop.

But Irene found it difficult when there were changes in services or the community. Life also became harder when she was forced to move because of the ‘bedroom tax’.

Then an infected horsefly bite led to sepsis and a flesh-eating condition, necrotising fasciitis. This needed many surgeries and Irene started deteriorating fast.

Learning disabilities and dementia

Irene was vulnerable to people taking advantage of her. She became besotted with a man who stole from her and neglected her.

The family was terrified Irene would die in terrible circumstances.

She missed memory clinic appointments and was neglected at home. They sent the man packing, and Irene blamed Jaymain.

Irene finally received a diagnosis of Alzheimer’s and was placed on medication.

‘Within two weeks of starting that medication,’ says Jaymain, ‘she went from sad to aggressive. She was paranoid about me and the nurses.

‘Everyone struggled with her. Eventually she had to move into a care home and then a mental health hospital.

I watched her decline. I begged for her to be treated with care and seen as someone frightened, not angry.

‘But because she had a learning disability, I didn’t feel informed enough to challenge what was happening. And because Irene didn’t trust me, she wouldn’t give me power of attorney.

Better dementia care for all

Although Jaymain got information from Alzheimer’s Society, there was a waiting list for more specialist support.

‘I had to fight to stop doctors ignoring me. 

Everything was a battle. The treatment of my auntie was appalling.

‘Irene didn’t come under older people’s services. She didn’t come under learning disability services. We need to get the health system and social care right.

‘I could look after my grandad because we always put his best self forward. My auntie didn’t have anyone to do that for her.

‘The dementia unit where she died was wonderful, but all the health service saw was crisis after crisis. Services were not dealing with each other.

‘I know that if Alzheimer’s Society was looking at my auntie, they would see her as a whole – as a young woman who liked dancing and singing, whose experience was valuable. People would have learnt from her.

I know what the system can look like when it works well, when the people looking after you understand your needs. This is what we need for everyone.