Body & Fitness

Charlotte Devereux on coping with her mother’s Alzheimer’s disease

"I have mourned the mother that I had," laments the entrepreneur.

Charlotte and Colyn, with loyal Labrador Coco, who is often by Colyn’s side. Although her illness has robbed Colyn of her ability to walk and communicate, Charlotte says she still responds to music.

When Kiwi entrepreneur Charlotte Devereux’s mother was diagnosed with Alzheimer’s disease six years ago, she lost more than just a parent; she lost her business partner and her friend.

“When Mum first got Alzheimer’s it was almost like going through a death,” says Charlotte. “She was very vital and an incredible businesswoman and she was also my best friend – I talked to her about everything. Losing that meant I lost Mum, and for about a year every day when I was with her I would cry.”

The mother/daughter duo started Egg Maternity Wear in 2001 when Charlotte was pregnant with her first child Jasmin. Egg expanded into Australia and Asia and the pair worked and travelled intensively together.

Charlotte first realised something was wrong when Colyn started experiencing some confusion and paranoia, and began repeating herself.

“It wasn’t immediately obvious, because people do repeat themselves as they get a bit older. I repeat myself,” says the 47-year-old. “But then she started telling me something 10 times in a couple of hours and I knew something was wrong.”

After a number of tests Colyn, a vibrant grandmother of 11 who as well as running Egg was the chairperson of the Auckland Chamber of Commerce and tirelessly mentoring business start-ups, was diagnosed with Alzheimer’s.

“The diagnosis was awful,” Charlotte says. “We knew something was up but we just hoped it was minor.”

Charlotte is speaking to The Australian Women’s Weekly from her mother’s home in central Auckland, where Colyn lives with her husband Les Kay and their Labrador Coco.

Charlotte comes here every Friday to look after 73-year-old Colyn, who is now in the advanced stages of Alzheimer’s and has lost the ability to speak and walk. From Monday to Thursday Colyn is looked after by Celia, a registered nurse, while Les works.

“We are very fortunate that Les has kept Mum at home,” says Charlotte of her stepfather.

“In the early stages people would say to us, ‘You need to put her in a [care] home,’ and during the really hard times we did consider it, but Les was adamant and I am so pleased that he was.”

Charlotte says Les’ dedication to Colyn has been remarkable. He began working at Egg Maternity so Colyn could continue to go there daily.

“At that point it was still really scary for her, and so she would come into work every day – and he would be helping in the background and making sure she was okay. She thought she was working and we let her believe that because she wanted to be busy and active. She really felt she was fine and we still wanted her to be involved.”

The early stages were the most frightening for the Devereux family as they watched the bright and successful woman they loved fight a disease that was quickly taking over her body and mind.

“She was, at the time, very distressed and we were too,” says Charlotte. “The hallucinations completely take hold of your brain and she was imagining terrible things and thought she was in danger. And of course she was also wandering – she would get up and go out of the house and the next door neighbours would find her down the road. She was on a mission, and then she’d get so fearful because she wouldn’t know where she was.

“But she also became quite good at pretending. She would do things like insist that she could drive and people would say, ‘But she is okay isn’t she?’ It would come in waves – so that is when we knew we had to learn some techniques.

“Les and I did a course. We had to sneak off because we didn’t want her to know that we were doing a carers course on Alzheimer’s because in her mind she didn’t have it.”

The different stages of the disease called for different approaches in care. In the early stages they focused on her routine and keeping her active.

“I would take Mum out every Wednesday to have her hair done and then have coffee. She would be spilling coffee everywhere and shouting out these strange things and people would be looking at us – but I still wanted to keep her routine,” explains Charlotte. “I would do her make-up and dress her well because keeping her dignity was really important to me and while people say she doesn’t know, I say, ‘I still know, and she is still here.’”

Initially Charlotte did a meditation course so she could teach her mother breathing techniques for relaxation, she did yoga with Colyn and took her swimming.

“Mum has now been in a wheelchair for over a year but prior to that I used to take her swimming. She’d always swum a lot and loved it, so I would carry her in the water and just float her to make her feel really buoyant – it used to relax her.

“I think keeping people with Alzheimer’s active is really important, because during the early stages it is very typical to get depression – and we know exercise helps fight that.

“It doesn’t need to be strenuous but they often just want to go into their shell, so it is just getting them outside walking or whatever they love to do.”

Now in the advanced stages of Alzheimer’s, Colyn needs full care, has little ability to communicate and her awareness has deteriorated drastically, but Charlotte is determined to look after her mother in the way she knows she’d like to be.

“Not everyone likes to be tactile but Mum really loves connection – she loves to be hugged and cuddled,” says Charlotte.

“I do get these little moments of clarity from her, and I think in those moments she might know me, there is a flash of something.”

Colyn in 2011, shortly before her Alzheimer’s diagnosis.

Keeping her dignity intact is a sentiment shared by the Devereux family.

“I tease Les that he’s become a make-up artist and a stylist. He’ll dress her, put a scarf on her and do her make-up. He is also a great cook – he makes the most amazing food which has kept her so healthy. He’s amazing.”

Charlotte’s children – Jasmin, 16, Sam, 13, and India, seven, remain close to their grandmother.

“On the positive side, this has brought our whole family a lot closer and taught us about empathy and patience. My 16-year-old, Jasmin, is incredible with her. She will come and talk to her and hug her. As a teenager it is quite hard to cope with that kind of thing. India, my baby, hasn’t known my mum any other way but she will come in and snuggle with her. They all understand it is still Gigi but in a different form.”

Colyn and Les’ loyal Labrador Coco is dearly devoted too. During our visit she spends much of the time sitting loyally by Colyn’s wheelchair.

Things have plateaued somewhat now after those exhausting first stages. Colyn is on less medication and is more settled – as is her family.

“We’ve moved to this next stage now and although some days I feel sad, I am more at peace with it,” says Charlotte.

Watching her once healthy mother become so ill has led Charlotte to look carefully at her own lifestyle. At Christmas, feeling close to burnout, she made the decision to step back a little from the beauty business Girl Undiscovered, of which she is a founding partner. She sold Egg last year but remains a shareholder of the company.

“I have always had terrible problems with sleep and so did Mum and a lot of that ties back to stress. I have juggled family and businesses over the years and put a lot of stress on myself because I have wanted to be everything for everyone. I have realised now I can’t do that. Now I am being kinder to myself – I have got back doing my yoga and my exercise and I know that if I am calmer then I can help my kids and Mum and keep my stress levels down.”

While Colyn’s purpose was to help women into business, Charlotte is now encouraging them to step back a bit.

“As much as I love everything Mum did, she worked hard and now she is not getting to enjoy all that hard work that she put in, and so I want to make sure I stop and have time.

“That is what I have learnt from it. You can’t have everything perfect. Her house always looked immaculate; now I go, ‘Oh well, there is dog hair all over the floor and there are dishes in the sink but I can’t do that right now.’ I have taken the pressure off myself but it has taken 47 years to do that.”

In a bid to fortify her health, Charlotte started researching natural remedies to help her sleep, give her energy, keep her brain healthy and skin glowing. She had personal success with her concoctions and soon found friends asking to try them. She is now working with a herbalist and food scientist to produce a range of wellbeing products she has called ‘Temple Powders’, which will be tailor-made for each customer.

She has also started a blog – A Beautiful Mind – which journals her experience with her mum’s Alzheimer’s and documents Charlotte’s own research into how to stay healthy herself.

Charlotte now nurtures her mother in the way her mother once nurtured her.

“I have been a little bit scared of getting Alzheimer’s and I thought that because my mum has it and my grandparents and aunties and uncles had it, it was inevitable.

“I soon discovered that while there is a percentage that might have the gene, a lot of people can get it for other reasons and so it led me on a journey to what might cause Alzheimer’s and what might prevent it.

“It’s twofold though, because a lot of the things I am doing to keep me healthy can help in early stages of Alzheimer’s too, whether it is diet, exercise, meditation, dance – there are so many things that can help.”

Like music. There is a particularly moving video on the blog where Charlotte puts on Neil Diamond, a favourite of Colyn’s, and dances with her in the wheelchair.

“She loved it, her legs started moving like she was dancing. Music stimulates memories and movement. It is the same with fragrance. My brother Danvers owns Matakana Botanicals and he brings fragrances to her – and I can see that they really evoke memories too.”

Charlotte says while she has sad days, she has come to terms with her mother’s condition.

“I have mourned the mother that I had and I miss her but I also feel very lucky that I had that time with her. Mum now is like my child in a way and I nurture her like she nurtured me. It is my time to look after her and keep her clothed and fed and warm and loved. I think that is the most important – having the love – and while people say [Alzheimer’s patients] don’t know, I feel like she does know the love that she has.”

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