Why my sister chose VAD, and why I now support VAD | Brigette Mitchell

Brigette Mitchell had always been against voluntary assisted dying until her sister Louise’s battle with motor neurone disease and decision to die with dignity changed her mind …

Adelaide businesswoman Brigette Mitchell, who is the owner of Finesse Models Australia, is sharing her sister Louise’s story to raise awareness about Motor Neurone Disease and voluntary assisted dying.

In mid 2023 I got the call from Louise, from her bed in Flinders, telling me they had found out what was wrong with her.

I was in an aisle at Coles, across from work … time stopped as I listened.

Her voice was calm and businesslike but I knew she was frightened.

It was Motor Neurone Disease, commonly known as MND.

Louise, who was in her mid 60s, had been a nurse, so she knew what was ahead … a long, drawn-out, torturous death.

I froze. I turned to face the stationery shelves to hide my crying from other shoppers but it was no use, the tears were flowing in a constant stream.

I walked back to the office in shock, knowing I had to keep myself together for Louise.

Louise. Picture: Supplied

Louise and Lucille. Picture: Supplied

Harsh reality

“I nursed someone in their final stages of MND and, you know, Brigette, I will never be a lump of meat laying in bed,” Louise told me when I visited her that afternoon.

Louise was fiercely independent. In her early 50s, she was diagnosed with breast cancer.

She went through all the chemo, and hell that comes with the disease, and beat it.

But Louise would never be able to tolerate such an ending. I nodded and said “I know”.

The medical team advised her to have a PEG (percutaneous endoscopic gastrostomy feeding tube) put in, while she was strong enough to take an operation. They told her, at some stage, she would not be able to swallow and would need to be fed via the PEG, which was a tube to her stomach.

Months went by with constant doctors appointments and tests and MND professionals coming to visit.

Brigette Mitchell, far right, with her daughters Claudia and Peta and sister Louise, second from left. Picture: Supplied

Our family – my husband Tim, brother Stephen and sister Helen and I – all tried to help as much as we could and Louise referred to us as being like a rash all over her. I told her to “suck it up” because she would be doing the same for any of us. Louise was a born carer, who totally would have dropped everything in her life to help others in the same predicament.

From the day she was diagnosed, Louise wanted to find out about voluntary assisted dying (VAD) and explore her options.

After asking one of her MND professionals about it, she was able to contact the right people.

Louise needed family witnesses to be present when the neurologist came to question her and ascertain if she was sound of mind. He was elderly and serious looking like an old-school doctor.

As he approached the house Louise and I joked that Dr Death was here.

Our jokes never stopped and it helped her cope, I think. I know it helped me and it certainly made for some hilarious memories of uncontrollable laughter.

Louise was given the all clear to go ahead with VAD and papers were signed.

Over the next few months MND took hold of Louise’s body and within a year she was being fed through a tube. She could not hold her head up and was unable to breathe on her own.

She went from a walking frame to an electric wheelchair and then she was bedbound. The ravages of the disease were attacking her with such ferocity that each day was a gift, yet brutal.

Brigette Mitchell and her sister Louise, with Buffy. Picture: Supplied

Louise. Picture: Supplied

Brave battle

Louise still had enough strength in her right hand to hold her phone and press on some prerecorded words, in her own voice, that had been recorded when she could speak.

She would lay in her bed watching TV and devouring any cricket she could find.

She was a cricket tragic!

Louise’s Blue Heeler cross Lucille, named after BB King’s guitar, was her constant companion, always by her side. We would have to make the dog go outside for some sunshine.

Louise didn’t want to die, she wanted to live and she would set herself goals.

Her first was to live long enough to watch the Paris Olympics and the second was to see the first female US president get elected and know that her vote counted; Louise was also an American citizen. It was not to be but at least she got to vote.

An overarching wish was to outlive our mum, so Mum did not have to be told of her passing.

Mum was in her 90s and Louise had been her carer.

MND raged like a bushfire, taking away strength from different parts of Louise’s body but her brain function was completely intact.

I am sure she would wake, every morning, hoping it was all a dream and then the horror would set in and she would be enslaved by the realities of the day; a never-ending round of drugs, PEG feeds, cough assist (a respiratory device used to keep lungs clear of secretions) machine beeping and boredom.

Louise sometimes would share her dreams of being able-bodied. Noone will ever know the inner frustration someone in that situation suffers.

Louise, right, and her partner Lori at Christmas in 2023. Picture: Supplied

Louise and Brigette and Tim's dog Buffy. Picture: Supplied

Time to say goodbye

Louise could not wait for mum to leave any longer. She needed to leave! She wanted to leave!

She and I talked about death, her thoughts, our feelings and her wishes.

For the first time we didn’t hide our tears and we all knew that she was leaving us soon.

On Friday, November 15, 2024, around lunchtime, Tim and I walked up the path to visit Louise like we had done so many times but this time was different.

We knew it would be the last time we would see her.

She was in her wheelchair sitting in the sun watching Lucille in the garden.

A friend of Louise’s was there, about to leave after their final goodbyes.

We told her we loved her, hugged and kissed her many times and left weeping as our brother arrived to say his goodbyes.

After all the goodbyes were done Louise showered and changed into her travel clothes she always wore on long haul flights.

She spent her final hours with her lifelong love Lori, who had been her primary carer, and Lucille.

The doctors arrived at about 2pm to administer the first drug which is a relaxant.

Louise and Lori settled in to watch cricket.

At about 3.45pm a doctor returned to administer the final drugs to send Louise to her next adventure.

But Australia hadn’t batted yet so she made the doctor wait in the kitchen until she had watched the Aussies bat.

The drugs were administered and she fell into an eternal slumber listening to her favourite opera with her dog on her bed and her love by her side.

After Louise had passed we returned to see her lying on her bed – no masks, no machines, no pain.

Her nose, which had been distorted by the tight breathing mask, had returned to its normal shape and she looked happy.

I sat there with her as the opera still played and contemplated her life, her death and her decision to VAD.

I had alway been against it for many reasons until Louise’s journey. Now I feel it’s a choice someone has the right to make.

Would I do it? I don’t think I would be brave enough.

Louise was independent. Her last act on this earth was her taking control.

Mum joined her four weeks later and Lucille will live out her life with me.

as told to Anna Vlach

* Brigette and Filip “With an F” Odzak are staging a runway show Frock at Festival Plaza on Saturday, March 29, to raise awareness and funds for MND South Australia.

Tickets are available from TryBooking.