New Zealand cooking legend Dame Alison Holst recently moved into care some five years after being diagnosed with dementia.
It was not an easy decision for the family, says Simon Holst, the other half of this celebrated mother-son cooking duo, who spoke about Dame Alison’s descent into dementia at the New Zealand Aged Care Association Conference in Wellington on 22-24 October.
One thing he is very clear about is that New Zealanders need to talk more about dementia, a condition that touches the lives of many, many New Zealanders.
“There is still a social stigma associated with mental illnesses and particularly dementia. I am not sure why. Perhaps it’s because it is hard to watch and it’s hard to know how to react,” says Simon, who co-authored over 40 cookbooks with Dame Alison, and nine of his own.
“There are personal and societal aspects to it. For me, talking about Mum’s journey has really helped and in doing so I have been gobsmacked by how many who have come forward and told me they too have a parent with dementia. As they say, a problem shared is a problem halved.”
At a societal level Simon’s also clear that dementia and dementia care is something New Zealand must grapple with given our rapidly ageing population living longer and with the incidence of dementia on the rise.
“When we were looking at different dementia care facilities for Mum, all of them had waiting lists. So, we need to think about that as a country and to also think about different models of care. There’s no one size fits all solution because dementia is about people. They’re not the people they were, but they’re still people.”
Dame Alison was 77 when diagnosed, but the symptoms, including anxiety and forgetfulness, had been there for some time. By then, this prolific author who pioneered television cookery in New Zealand and had a half-century legacy on the screen and bookshelves, was no longer able to cook.
The family let the public know in 2015 and received an outpouring of support from New Zealanders and chefs alike.
Simon says seeing his mother and mentor no longer in the kitchen was upsetting, as were other the changes along the journey of this progressive illness. He developed his passion for food from his mum, learning how to source and appreciate fine ingredients and produce, as well as techniques involved in making a fantastic cooking.
“I know a lot of people associate Mum with good basic home cooking, but she was actually very adventurous and creative,” says Simon who is now a senior advisor at New Zealand Food Safey.
Indeed, Dame Alison has been credited with introducing New Zealanders to ‘exotic’ foods such as soy sauce, star anise, filo pastry and garlic.
Simon says his dad was committed to keeping Dame Alison at home for as long as possible and has been a devoted caregiver over the years, more recently with the aid of home support and respite care.
“Without daily respite care, Dad couldn’t have kept Mum at home as long as he did. Making the decision to put Mum, his partner of more than 50 years, into care was very tough for him. But once he’d made it, he felt better and is now able to think about himself and his own health.”
His parents had planned their retirement well, buying a single-level apartment in Orewa overlooking the beach. And while their travel plans did not transpire, Dame Alison took great pleasure and comfort from the beach view.
Simon says his mother had not been resistant to the prospect of care, having considered it in the earlier stages of the condition. And whilst he initially felt some fear around her entering care, he very much changed his mind after seeing the quality of care for his mother – as well as the way it’s enabled his father to refocus on himself and his health.
“There are very lovely people doing the caring; genuinely caring people. And I am just really grateful for that.
“Though I would like to see the current terminology around dementia care change to better reflect the fact that it’s about people and it’s about compassion.
“I mean, no one wants to put their loved one into a ‘psychogeriatric’ facility. That’s a pretty confronting term. So, maybe we need to change how we talk about it as part of making it more real.”