Author Pip Desmond writes about the difficulties of caring for a mother with dementia in her book Song For Rosaleen. The former parliamentary press secretary also documented her work with gang women in her book Trust.
1 In Song for Rosaleen you write about the struggle to get your mother's dementia diagnosed. Is that a common problem for families?
Since the book came out, quite a few people have told me similar stories. I'm not sure why doctors are reluctant to diagnose dementia but it was extremely unhelpful in our experience. We spent a year trying to find out what was wrong with Mum but the hospital geriatrician kept telling us it wasn't dementia. Part of the problem was that he didn't listen to us, her family. Also the test he used for dementia didn't work: Mum could still tell the time, the day of the week and the Prime Minister's name even in advanced stages of the disease. It wasn't until I rang the Alzheimer's Society that the field worker said to me: "Everything you are telling me sounds like dementia."
2 What difference did the diagnosis make?
It was a relief to have someone put a name to it. It was helpful to be able to access information and support. The field worker taught us that with dementia the rules change; there's no point arguing with the person or trying to get them to see your point of view because their ability to reason has been affected. Instead you do what's called "therapeutic fibbing" and respond to the emotion behind the words. I found that really hard to do because I've always believed in telling the truth and Mum still looked like the same intelligent, eloquent person she'd always been.
3 How did your mother react to the diagnosis?
The most heartbreaking thing was that Mum couldn't remember that she couldn't remember. It's called anosognosia. Because Mum had no insight into her condition, you couldn't explain to her why she had to stop driving or have a carer come and mind her. She hated having strangers in the house and was bewildered as to why we would take away her independence. Not being allowed to drive was absolutely devastating for her but it was getting to the point where she could have hurt herself or someone else.
4 What were the dangers of her living at home alone as the dementia advanced?
The biggest worry was her falling; she lived in a two-storey house with steep steps but we were reluctant to move her because 1) she was really resistant and 2) we knew that moving her would result in her deteriorating a whole level. All the things that filled her day — making a cup of tea, having a bath, putting on the washing, tending her garden, going to the supermarket and cooking her own meals — would get wiped in a single swoop because she wasn't able to relearn those familiar tasks in a new setting. That was our terrible dilemma. We got her a medical alarm but she wouldn't wear it. We managed to get by with one of us visiting every day.
5 What was the catalyst for her move to the retirement village?
Mum had a final fall that put her in hospital. It was clear she couldn't go home; her needs were too great and we were too exhausted. It was hard to find a place at short notice. People with moderate dementia don't fit easily because they're not independent enough for an apartment but not sick enough for a rest home or secure unit. Some not-for-profit ones had a good vibe but were a bit shabby and crowded so we opted for a studio unit in a large retirement village.
6 Were you happy with your decision?
We were warned that these retirement villages are "real estate, not healthcare" and those words haunted us. Most of the studio residents had dementia yet the staff seemed to have no understanding of dementia or systems in place to deal with it. Atul Gawande in his book Being Mortal writes about food being the 100 Years' War in nursing homes and that was the case with Mum. She was losing weight fast with few records kept or oversight of what she was actually eating. When she broke her shoulder and ended up in the hospital part of the village, the care got even worse.
7 Did you make a complaint?
By the time Mum died we were too overwhelmed and exhausted to make a formal complaint. Several years later a daughter of a resident did complain for all the same reasons. The Ministry of Health upheld the complaint and the manager resigned. I felt huge regret that I hadn't done the same earlier.
8 Why are families reluctant to complain about rest-home care?
You worry that your loved one will get bullied as a result. They can't tell you what's going on. We were already seen as troublesome because we were forever ringing up and calling meetings with management. Reading the hospital notes after Mum died was just so sad. There was so little sense of her as a person. People with dementia were seen as naughty and obstructive rather than confused and distressed.
9 Do you have any concerns about the wider rest-home sector?
I think there is more understanding about dementia than when Mum died in 2009. Dementia care requires a lot of well-trained staff and comprehensive systems. We're heading for an avalanche and to deal with people humanely we're going to have to decide to put resources into this.
10 Growing up in Wellington did you always want to be a writer?
No, it was always expected that I would go to university. At Victoria in 1973 I quickly became involved in feminism and left-wing politics. Lots of graduates were going to work in factories to show solidarity with the working class. We wanted to change the world and be a voice for the oppressed in our very naive way.
11 How did you get involved in gangs?
I moved into a flat with a community worker called Annie and a gang matriarch named Bubbles. Muldoon's PEP scheme allowed men to work in gangs so we thought, "Why can't women do it too?" We set up a work co-operative and got jobs like scrub cutting, painting and playground maintenance. We had an all-women house and paid 10 per cent of our wages into a communal kitty. About 30 women came through Aroha Trust over its three years. It was idealistic but difficult in practice.
12 Did you always plan to write a book about your experience?
No, I lost touch with most of the women once I married and had children. I went on to lead quite a conventional life; I edited a magazine for the Federation of Voluntary Organisations and worked for Ruth Dyson in Parliament. But I always wondered what happened to the women so in 2000 I got an oral history grant to interview 12 of them about their lives. I became a writer because I had a story I wanted to tell.
• Song For Rosaleen by Pip Desmond, Massey University Press, RRP $29.99, in bookshops nationwide.