Facing tough decisions about a person’s care as their dementia progresses

‘It’s challenging, deciding what to do when your parents develop a long-term illness and balancing this with work and your own personal wellbeing,’ says Nova, whose 84-year old mum Doris was diagnosed with Alzheimer’s in late 2019.

With their mum’s care needs increasing, Nova and her siblings are turning to more outside help as they strive to decide what is best for Doris.

‘It’s been a very difficult time, a strain for us all, and her situation is getting worse,’ says Nova who, like the others, has been juggling her mum’s care with her own work commitments.

‘When our dad had dementia, Mum had to give up many of her voluntary community commitments. Mum’s wellbeing is the main priority but we’re trying to live our lives as well, because we know it’s what she would have wanted.’

Nova is calling for better support for people who are caring for someone with dementia.

‘More needs to be done in terms of fairer financial support, so that family carers are able to have a better quality of life.’

Strong-minded 

Doris, a great-grandmother who turns 85 in May, came to England from Jamaica in 1960, a year after her husband. Nova was still a baby and didn’t join her parents in the country until she was seven. Doris worked as an auxiliary nurse, including night shifts at what was then a children’s hospital in Wolverhampton, in the West Midlands. 

‘My parents were both very hardworking,’ says Nova, who lives in Wolverhampton. 

‘Mum was feisty and very strong-minded – she stood her ground. She was also very family orientated, a typical Jamaican woman.’ 

Even after her retirement, Doris was very active in the community. She ran an Age Concern club and was a member of local transportation and hospital boards. She was a retired member of Unison, the union, and actively involved with her Methodist church.

Not safe 

Now semi-retired, Nova worked abroad for 20 years, during which time her dad died with dementia. She returned to England in April 2019 and started to see changes in her mum’s behaviour. 

‘I was noticing things she was doing that weren’t safe,’ says Nova. ‘I came back one afternoon and she’d put a ready meal in the oven still in the paper carton. 

‘Another time she had been given a portable stove because of work going on at the house, but she was cooking something that would have caught fire.’ 

Having also become very repetitive with her questions, Doris saw the doctor in October 2019, before taking a test at the memory clinic the following month. This led to a diagnosis of Alzheimer’s. 

During the first COVID lockdown, Doris’s levels of confusion increased. 

‘Mum became verbally aggressive towards me, which frightened me,’ says Nova. ‘She was also not recognising some of her siblings.’ 

On one occasion Nova called an ambulance because she thought her mum was having a stroke, which turned out to be delirium. Doris also lives with chronic back pain and cornea problems.

Daunting and sad 

With day centres closed because of the pandemic, Nova was feeling the pressure of having to be there continuously for her mum. So the family employed a carer to spend time with Doris during the day, while Nova and her siblings took turns to go in the evening and stay the night with Doris. 

‘Mum developed sundowning, saying it’s not her house. She kept wanting to go back to where I used to live, or go and see her mother,’ says Nova, who received support and advice on these challenges from Anuja Jalota, Dementia Support Worker at Alzheimer’s Society. 

With the easing of the pandemic restrictions, the family support Doris to attend a day centre, where she enjoys being around other people. However, many challenges remain, and Doris’s level of need is high. 

‘She can be in a foul mood and doesn’t want to go to bed some days,’ says Nova. ‘If you speak to her, she’s quite lucid, but she needs 24/7 support, including personal care, as there are many things she cannot do herself. 

‘Caring for Mum is daunting and sad, and we all have to work as well.’

Too much 

Additional support from a visiting relative allowed Nova to have a few weeks’ holiday. Since her return, the family is trying to decide on the best longer-term support for Doris. 

Doris is on a six-month waiting list to have her home assessed for potential adaptations, while another concern is the high cost of homecare. 

‘It’s at least £1,000 a week,’ says Nova, who is also critical of how little care workers are paid. 

‘What the staff get paid, compared to what we’d have to pay the company, isn’t fair,’ she says. ‘To get good care workers into the profession, they should be valued more.’

To the fore 

Nova believes there are lots of other families in a similar situation and she wants the government to improve the social care system. 

‘People will be torn, having to weigh up the care of a person with dementia with the cost of a care home.

‘People are living longer and something needs to be done,’ she says. 

‘They need to come up with a strategy, like a scheme which people pay into to cover their costs when they get older.’ 

And as she prepares for this new stage in her mum’s care, Nova would also like to see better support for families, greater investment in dementia research and more information about dementia prevention. 

‘It seems like every other person we hear of has dementia – it’s worrying,’ she says. ‘Dementia needs to be brought to the fore, even more.’