Dementia saved us: Why Wendyl says her mum’s diagnosis brought them closer

In her latest book, Wendyl Nissen uncovers family secrets while caring for her mother, who had dementia. They walked in the clouds together and became close for the first time.

For me, demented Mum was an absolute delight. Having been terrorised by her for most of my life, to the stage where I couldn’t hug her any more without feeling nauseous, Elis turned into a sweet little girl. She was childlike in her mannerisms, really loved being visited and developed a sing-song-y way of talking. She would ask what day it was and be so surprised! Then five minutes later she would ask again and be so surprised again.

She would take great delight in receiving things, like a new cookbook. She would spend hours going through cookbooks, putting little slips of paper in to mark recipes she would never cook. But she didn’t know that.

Some days Mum was very aware of what was happening to her, and others not at all, in fact, she was away with the fairies. There would be another person in the room quite a lot; visitors we were never aware of. She would quite often look at them but not include them in conversations. Later she would say, “Did you see that woman sitting over there before?”

I would say, “Of course, she seemed very nice.”

She also lived in the past and would tell me long, often funny, sometimes harrowing stories of her childhood.

For some people, talking to a person who repeats themselves and forgets things can be frustrating. In care homes I’ve seen some terrible examples of relatives constantly correcting their demented person. “No that’s not right, no that didn’t happen. Honestly, I just told you that five minutes ago!”

The key to spending time and talking with someone with dementia is to just go with the flow, and get used to repeating yourself without rolling your eyes or using a frustrated tone of voice. They’re not deliberately trying to annoy you; they can’t help it. It does take a bit of practice, but eventually you get really good at coming up with several different responses to the same statement. My mother-in-law, Valmai, also has dementia, and will often tell me 20 times in 20 minutes about her sore back.

I pride myself on having a different answer each time. “You need a couple of Panadol for that,” I’ll say. “You must have slept funny,” or “Let’s put a hotty on it.” Once you get into that, it can be quite fun.

Mum was relatively easy to care for during those two years when she lived with us. When she wasn’t childlike and full of wonder, she was having fun in the clouds or with imaginary people. Mum and I would go on fantasy journeys together, during which I would learn quite a lot about my mother that I’d never known. I was also quite safe from Bad Elis and Lady Elis (my mother’s other personalities) who seemed to have been murdered by dementia. Thank you, dementia.

During this light and airy, sunny time in our relationship, I often imagined with a thrill exactly how Mum’s demented brain was starving Bad Elis and Lady Elis of oxygen until they shrivelled up into nothing.

I had lived in fear of those two Elises all my life; now they were gone. I couldn’t believe my luck. Finally I was getting the mother I had wanted all my life. Cheery, loving, sunshiny and pleasant to be with. Dementia had saved my relationship with my mother and bought me some time to find out what it is like to have a mother who is constantly in the same personality (albeit demented).

Wendyl Nissen's mother Elis standing on wharf with dog

I knew we were very lucky. There are many stories of perfectly lovely old people turning into horrible, abusive and violent people in the throes of dementia. I saw it a lot in care homes later on. One woman in particular haunts me to this day. She would sit in the day room with a large teddy bear and systematically beat it to death. Really violently, like she knew what she was doing. When she wasn’t beating up the teddy, she was yelling abuse at her neighbours and the staff. If a staff member came too close, she would lash out and hit them. Imagine how terrifying and distressing this would be for her family.

Instead we had Nice Elis, who was quite happy as long as she had a cookbook to look at, a comfy couch to doze off on in the sun, and plenty of food. She was also not a wanderer, which can often be a problem. She had lost most of her movement and could really only walk two metres at a time.

I know that Mum missed her social life in Auckland: her trips to the bridge club, having friends around for coffee, lunches and dinners. But the reality was that most of her friends were dead, and others had not kept in touch after Mum’s dementia started to kick in and she couldn’t play bridge any more. Instead, Dad would take her for drives, or I would. We would sometimes visit friends nearby for a game of Scrabble and lunch. Anything to get out of the house.

She would sit quietly in the front seat and be absolutely delighted at everything she saw.

When I was doing my radio show, a listener contacted me and told me that she cared for her dad who had dementia, and his daily drives to the seaside kept him going. “Every day it was all new to him and he loved experiencing it all over again.” Mum was the same. She loved looking across the paddocks and out to sea on our drives into Kaikohe. She would sit patiently in the car while I did my errands, then I would buy some lunch and we would drive to a park up on a hill and eat it looking out over the town. It was always the same for me, but not for her.

We would have lovely chats. In the confines of my small Toyota Corolla she could hear me very well, despite her deafness, and so we talked. About her revolting childhood where food was a major theme. About her not having enough, and her sister having her own biscuit jar. About always being hungry.

“Consider the lilies of the field, how they grow. They toil not, neither do they spin,” Mum would say as we passed some lilies growing in a paddock.

“Where’s that from, Mum,” I asked.

“The Bible. Probably something we did at church.” She was remembering her childhood where she played the organ at church.

“Bloody church,” she mumbled.

We drove a little further, both marvelling at the beautiful sunny day, with light fluffy clouds in the sky – a perfect late winter’s afternoon.

“Have you ever walked in the clouds, Wendyl?” she asked.

I took a moment and then answered. “No, Mum. What is it like?”

“Oh it’s a lot of fun, but getting from one cloud to another can be a bit difficult. Once you’re there, it’s very enjoyable.”

She stared at the clouds a little longer and then switched her attention to the paddocks again.

I didn’t laugh. I didn’t react. The last time I had had a conversation like that, it had involved a lot of recreational drugs. Instead, I indulged in a moment’s thought about what it must be like to think you can walk in the clouds. Not bad, I imagined.

Mum would forget things on a five-minute cycle. Sometimes she would come out with things that were in her imagination. She saw two cats when there was one. Mum used to hate cats because her sister with the biscuit jar once threw one at her. She has avoided them ever since; but now, in her new state, she quite liked them.

Mum’s brain was busy exploring a new dimension, one she wasn’t unhappy with, and where all her needs were met.

My Mother and Other Secrets by Wendyl Nissen
Extracted from My Mother and Other Secrets by Wendyl Nissen (Allen & Unwin NZ, $36.99).

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