“Has it got any easier? The answer is no.”
Nicola Steen’s 94-year-old father Alec was diagnosed with Alzheimer’s 2006.
She has not worked full time since 2009. And 50% of her time is spent, along with her sister, looking after her father. “You are managing a care home. A private care home,” she says.
Theresa May’s initial attempt at a social care policy, branded a “dementia tax”, did not go down well with voters or Tory candidates.
“I don’t think you can do this. I don’t think it’s right,” Nicola says. “I think what this announcement is very uncaring - I don’t think she has thought it through,” Nicola says.
“I think May just doesn’t really get it. I think the people around her don’t get it. Generally they should have really talked to people.
“I actually think this is discriminatory. If this was applied to someone if it was someone with a different colour skin, or just women, or red heads or physically disabled people or gay people? Can you imagine? This is people with dementia. This is people who are vulnerable who can’t speak up for themselves who are freaked out anyway. It’s very cruel.”
Nicola thinks back to when Alec was diagnosed. “There is a special test you do for Alzheimer’s,” she says. The doctor asked her father to write the numbers on a clock face.
“The thing about Alzheimer’s is that I don’t know what my dad is thinking. And I knew nothing about the condition when he first got diagnosed.
“The first time he did it he got the numbers ok. And then doctor said ‘can you put the hands on ten past three?’ My dad couldn’t do that. I was amazed. I just couldn’t understand what was going on. He sat there and he couldn’t put the hands at ten past three.”
Alec could not do that test. But he could pass others. “He could write a sentence. And they would always be nice. they wouldn’t be ‘the cat sat on the mat’ they would be like ‘thank you for helping me’.”
“Our parents were brought up working class,” Nicola says. “Poor.”
“They made money through saving. And that’s why have family homes. We are not rich. They didn’t inherit anything. They have worked hard. They have contributed.
“He was diagnosed in 2006. I think he sort of worked out himself that something was wrong. My mum died in 2002. And we are not an affluent family. I just happened to move to London when it was possible to start buying a house.
“She was a teacher. and my dad was a minister, a full time Christian worker. My mum really was the bread winner. “
“My dad was devastated, broken hearted. My mum eight years younger than my dad. I really don’t think any of us thought my dad would outlive my mum. It never just hadn’t crossed our minds. Our mum got cancer. And my dad was broken. I think that brings on Alzheimer’s.”
Nicola lives in London. Her father lives in Nottingham. around half of Nicola’s time is spent caring for her father. Or organising the people who care for him. “I sort out my dad’s finances, my dad’s medical care, my dad’s live in care. my dad’s agency care, my dad’s visits, his food shopping. I do all this,” she says.
And that’s before she has time to look after herself.
“Now, I don’t really know for sure, but I think maybe he hasn’t got the wherewithal to use two senses. I think it’s easier for him to just use one sense. It’s quite difficult though because it looks like he is asleep. But he is listening,” Nicola says.
“My dad now often eats with his eyes shut. That is how much trust he’s got. He knows what we are giving him is fine. He has a got a lot of trust and he knows we love him.”
Despite the difficulties both face, Nicola says her father is “incredible” and “he would not want anyone to feel sad for him. He’s had a great life and he has a strong faith”.
“We look like we are in cahoots,” she laughs at a picture of them both. “Which we are.”
Nicola says there are systems that work. “There are wonderful care homes in the Netherlands,” she says. “There are places and villages that they have set up places where they have students living with older people. That’s a wonderful thing. Or getting older people involved in teaching kids at primary school. More integration.
“Most people want people to be looked after. They want to feel that’s what the whole ethos of the NHS is. Everybody wants that.”
“This morning I ordered a BBQ for him, which will be a type of therapy too. Last year one of his live in careers bought him a disposable BBQ. My dad went into the garden and watched. It was an activity they could do together.”