Nathalie: A Love Story
April 29, 2019
On a recent morning in Sydney’s Bellevue Hill, Nathalie Rabin, 53, told me a love story – of losing love, finding love and the sacrifices we make for those we love when Alzheimer’s disease strikes.
Nathalie, tell me about growing up in Sydney’s Eastern suburbs.
Looking back my two brothers and I had a wonderful upbringing. My father, Alex, was a confirmed atheist but firmly believed that we should be taught about our Jewish heritage. What was instilled in us was the power of family, sharing a meal together and being interested in the broader world. He was a pharmacist and played tennis every day until into his 80’s. His other passion was singing and for many years he was choirmaster for the Great Synagogue and Central Synagogue. My mother, Gisele, grew up in France and had been hidden during the war at Chateaux Chabannes and then in a convent. Maman was a housewife when I was growing up and then she went to college and became a teacher.
When I was about eight, my parents took us to Europe for a year and we travelled in a 25-foot motor home with Maman as our arts and tour guide.
You worked as a professional chef in London till you were 26. How was your relationship with your parents on returning to Australia?
When I came back from overseas we had a much better relationship. Before I was always clashing heads with them. And when I came back we became friends. We had dinner maybe once or twice a week and spoke on the telephone at least once a day. As both of my brothers have lived overseas for many years it was really just me and them.
You went on to have a big career, gaining an MBA and working in investor relations. What happened when your parents became ill?
Dad was getting increasingly sicker, and I was burning the candle at both ends. By 2016, I was going to work, picking my mom from the hospital, taking her home, making sure she had something to eat and getting home about 9 or 10 pm.
At that time my job was pretty demanding and they wanted my full attention at work. But at the back of my mind, I was waiting for the phone call. And so I left work. Within two weeks, my dad had passed away.
Mum had already been diagnosed with Alzheimer’s, but we didn’t realize how far along it was. Dad had kept it a secret and Maman had learned strategies to cover it up.
You married photographer and videographer Luke Caldwell in 2015 after knowing him when you were young. How did you meet again?
Luke and I first knew each other when I was a teenager and Luke was in his early 20s. He was this gorgeous boy wearing a black leather jacket and black eyeliner. Around 2012, he contacted me on Facebook and we talked a lot and texted and then we finally went out. I said to him pretty early on that this feels right. If it’s on it’s on, and if it’s not let’s just leave it. I was perfectly happy on my own with a close circle of friends. We married three years ago and my brothers came out to Australia. My dad was pretty sick and we wanted an occasion where everyone was together and celebrating life.
What was it like being married for the first time in your late 40’s?
Luke knew the story that my family came with me; we were a package deal. He’s just an angel. No one else would have done this. He gave up his own home and moved in here to look after his mother-in-law. And we moved from our own home into one bedroom. We’ve been at Maman’s for two-and-a-half years.
Did you consider putting your mother into care?
No, never. I made a promise to Dad the night he passed away that I would never do that and Luke and I would look after Maman as long as we could. Dad made provisions financially that we could look after Mum at home. And this is just what we do. This is her home and we were trying to keep as much as we could the same.
Has your love for Luke changed since you married?
I knew he was always fabulous. Dad was worried because Luke was a photographer and didn’t have a full-time job. But I told Dad that families are made up of all different types of relationships and this is ours. And Luke is such a kind and considerate man. How could you not love such kindness? When Dad was in the hospital he realized it, the absolute love and kindness that is Luke.
After our wedding, Dad used to say to me when I’d come up to visit, “So Luke’s not coming tonight?” I’m like: “Hello. I’m your daughter!” Luke is the love of my life, and I respect him so much, what he’s doing, with love.
What is living with someone with Alzheimer’s like?
It’s exhausting, and there is not one minute of respite, even at night. But it’s easier now as compared to a couple of years ago because we’ve set up a strict routine. We’ve got some fantastic girls from Jewish Care that come four days a week and they adore Maman. I hear them laughing, singing and dancing, it’s really wonderful. And they have become my close friends as well.
Within that regimen, Maman operates fantastically. But she’s gone downhill over the last year, in new situations you realize how she has deteriorated quite dramatically, which is the nature of Alzheimer’s. It’s just an awful disease. The person who is strong and fierce, and you can lean on, who can hold you when things are bad and who can give you advice, just disappears before your eyes.
I’ve now read tons about Alzheimer’s and I joined a support group on Facebook. At first, I was angry with Dad for hiding it for so long. But now I’ve come to terms with it. And I meditate. Luke and I met a Buddhist nun in London and she said to me what a privilege it was to be able to look after a parent. And I wholeheartedly agree it is a privilege to look after somebody whether it’s a parent or a child and to give back and to make them feel safe and loved, especially for someone in this situation.
She hates it. She knows that she forgets and she hates it. But she’s still her.
What is Alzheimer’s like for the person with the disease?
Mamman hates it. She knows that she forgets and she hates it, but she’s still her. She tells me she doesn’t want to be a burden. I say: “Look it doesn’t matter that you don’t have a memory. You know we’re here. We love you. You’re safe. And we can be your memory.”
With Alzheimer’s you don’t recall what you have just done or what to do. You don’t know what’s happening as your reference points are in the past. And you get so scared and frightened. We are so blessed that Maman is happy to do anything with us. She’s just full of love. She is very bound to me because I make her feel safe.
We also have a Groodle, Daisy who has a special relationship with Maman. They just adore each other. We call them twins because they lie on the couch together and watch TV and have the same shade of blonde hair.
How is married life for you and Luke as full time carers for Gisele?
We don’t go out. We don’t see our friends and that’s the worst thing. You become isolated and people just don’t understand. At first, I was just so exhausted that I just couldn’t see anyone. And I’ve accepted that it is what it is. We are trying to get out more. We don’t get much privacy. We are a threesome.
What do you expect from the next few years?
There are all sorts of horrible things with Alzheimer’s that just get worse. We constantly monitor Mum’s eating because the brain tells mom she’s not hungry and she’s not thirsty. But we also tease her and make her laugh a lot. There are lots of hugs and kisses.
I’m applying for part-time jobs at the moment just because otherwise I’ll go insane. And I’ve gone for a role as a receptionist. It’s five hours a day and. will get me out of the house. There’s no ego attached to it. Having a big job is not my goal point on the planet now. It’s never about Luke and me; our focus is totally on Maman, which is hard. I’ve learned a lot about patience. I do want Luke though to go back to work. He is so creative and I know he needs that outlet. He doesn’t say anything, but he needs to be inspired again.
What are your personal goals?
I think I have to find myself again. One of the things with this disease is that your focus is on one person all the time. I don’t think I’ve put makeup on for two years. So I think it’s spending some time on myself. For Luke’s birthday, we went to a gorgeous hotel and I got one of the girls to stay the night. It was superb.
How is Gisele now?
You hear horror stories of people their personality changing and that has not been our experience. Intellectually, Maman is still there but she struggles at times finding words. The disease is horrible because in one sense you’ve got to keep them safe and healthy and in the other, you have to give them the respect that they deserve.
Do people understand your life?
It’s very difficult to understand unless you have seen it or gone through it because it’s so all-encompassing. We are starting to have our closest friends over for dinner, and they adore her and speak French with her. But no one really understands the constant responsibility.
But what’s now prompting change is the increasing incidence of early onset Alzheimer’s. It’s affecting more people in their late 50’s and 60’s. More money is starting to go into research. And it’s just going to become more prevalent. And to care for someone you love, for a long time, you just have to be kind to yourself. That’s the biggest thing. You grieve for the parent gone, but you also have to love the parent they have become.