Caring for a parent with dementia while still in your 20s

Most 20-year-olds are out with their friends, searching out partners, focused on university or finding a job they love.

Not Jonathan Knight. He was just 20 when his mother, Christine, was diagnosed at 54 with young-onset Alzheimer’s.

And at 20, he made the decision that his mum would always come first.

Until she died, just two years later, he cared for her around the clock. 

Christine had been a single parent. For Jonathan, he and his mum had always been a team of two and he wasn’t going to let any illness stand in the way.

‘I don’t think most of my friends would have been able to cope at our age,’ he says, ‘But I’d been brought up dealing with hardship and getting on with it so it’s something I know.’

Joy and support

Christine had come to England from Jamaica when she was young. 

Life was hard at the start, and she struggled to make a living for herself, working out which job she would be good at.

When she was 35, she gave birth to Jonathan.

Another source of joy was finding she was an excellent carer for older people – in fact, she’d pop in to see some of those who’d been in her care until just before she died.

Looking back, Jonathan remembers Christine as a wonderful mum.

‘She always put me first and gave me all I needed. She took care of priorities.’

‘From very early on she put all her qualities into me. I inherited them from her.

‘She was very organised, very clean and tidy. As well as being kind and polite, there was an innocence about her, she was quiet and discreet, almost fairy-like.

‘I was happy. Mum made me happy. I was supportive, helping her with cleaning and tidying.

‘At one point she was stressed because the landlord was hassling her for rent that she couldn’t pay. I was only nine or 10 and I went to court with her to help her deal with the situation.’

‘I was her main support and there was no hiding from these difficulties.’

Gradual but rapid

Just four years ago, Christine began to be more forgetful. 

‘She noticed the changes, not me,’ says Jonathan.

‘She kept asking me the same questions two or three times and I’d say to her, “I already answered that, Mum.”’

When Christine was diagnosed at London’s King’s College Hospital, Jonathan was shocked.

He saw his mum as still perfectly fine, just forgetting little bits of information and conversation here and there. 

He remembers picking her up in his car and thinking, ‘But there’s nothing wrong with you.’

He describes the progression of her condition as both gradual and rapid at the same time. 

‘It was moving at a fast rate, but the daily changes were small. Each day she was doing less and less and less.’

‘I became used to it and the progress gave me time to adjust. It was a pace that allowed me to understand.’

Jonathan realised the true significance of her illness when she started asking him to take her home and she was already there. 

‘That’s when it sunk in,’ he says. ‘I said, “Mum, you are at home,” and tried to reassure her.

‘Just like when we went to court when we couldn’t pay the rent, I had no time to get emotional about it. I was just there to support her.’

Focus on Mum

Before this, Jonathan had been to college and studied business and economics. He’d started a successful career, working both as a BMW vehicle technician and as an  apprentice in electrical engineering.

A year and a half into his mum’s diagnosis, he halted his career to look after her.

‘I knew that if she was put into a care home, I wouldn’t be able to sleep at night,’ he says. 

‘I decided to focus on Mum while she was with me. I would rather miss out on some of my career. During that time Mum came first and my life came afterwards.’

His years as a carer were hard work, but he valued them. 

‘I did everything for her. We didn’t have outside carers until five months before she died. Then they would come for 20 minutes in the morning and 45 minutes in the afternoon.

‘We never knew when they’d arrive. When they got to us, they’d say, “Do you need anything?” but I would have already done everything. 

‘I preferred to wash her than let them do that. I knew her better than them.’

Friends at YODA

Whenever Jonathan needed help, YODA – Young Onset Dementia Activists, a group set up by Bromley, Lewisham & Greenwich Mind – was ready to step in to give him support.

Christine had begun shouting and hallucinating. Sometimes she’d leave the home, meaning Jonathan and the police had to search the streets for her.

This was exhausting and terrifying, and eventually YODA organised respite care to give Jonathan a break.

This ended up lasting three months, longer than anyone wanted, but once she was back home, Jonathan brought Christine back to YODA.

She never forgot her friends. The sparkle in her eye would return or she’d make a cheeky joke to someone. 

Attending YODA was a ‘release’ for Christine, says Jonathan.

She was sociable and friendly and made a wonderful speech at a launch event describing her son as ‘her rock’. 

They went to YODA together for the last time two weeks before Christine died, seeing their friends and enjoying the group’s end of year meal.

It was a terrible shock when she died earlier this year. 

‘I knew I would lose her eventually,’ says Jonathan.

‘But I thought by the time Mum passed away, she would be in her 70s. I didn’t expect it would happen at 56.’

Thoughtful as ever, Christine had prepared her son by often reminding him to take care of one of his uncles and Milo, their kitten.

Sudden loss

Christine suddenly developed a chest infection – her second – and had a high level of potassium in her blood, causing her heart to stop.

Her diabetes and sickle cell anaemia meant Jonathan had faced her medical issues before, but this one was final.

‘It really upsets me when I think about losing her,’ says Jonathan. ‘She wasn’t physically bad. She could still climb in and out of the bath and didn’t need a stick to walk with, so I wasn’t expecting her to die when she did.’ 

Her other illnesses have meant hospital stays so Jonathan is used to living on his own, but his loss is now permanent. 

‘I know she wouldn’t want me to be a wreck right now. She’d want me to be OK.’

‘I miss her, and I miss looking after her. I’m unhappy she won’t see me go on to live my own life. I stopped my life to look after her, and she felt guilty about that.

‘I feel so bad she won’t see me move out, have a family, do everything I want.’

He says he never feels isolated. ‘I have eight really close friends,’ he says, ‘None of them knew about Mum until quite recently.

‘I didn’t need to give anyone a sob story. Even my father, who lives close by, didn’t know for a long time.

‘I felt confident dealing with things by myself.’

No regrets

Jonathan continues to attend YODA outings and comes to the group for support.

‘One advantage of being young is that I have a lot of energy. There was so much I could do.

‘I often had to cancel seeing friends, but I feel I was a genuinely good son. I hope I was.’

Jonathan is aware of how much he did for his mother at such a young age.

His advice to other young people is that they don’t have to follow his lead. Far better to do what feels right for them. 

‘If it’s in your heart, do all you can,’ he says.

‘If it’s not in your heart and you can’t keep up the pace of caring with little support, don’t do it. It will be worse for them and for you.’

Either course of action can work well and be the right one. 

‘What’s most important of all,’ he explains, ‘Is living a life with no regrets.’

For more about YODA in south London, email [email protected]