'We left nothing unsaid'

Voluntary Assisted Dying became available to eligible people in NSW on November 28, 2023. One week later, Gunter Kosmala, who had end-stage Parkinson's, made his first request. He was among the first people to access VAD in NSW.

His wife, Sue Kosmala, tells the story of their VAD journey, in the hope it will help other people. 

''In August 2023, my husband Gunter was diagnosed with end-stage Parkinson’s and I booked a cruise with a return date of November 30th.

That date was no coincidence - Voluntary Assisted Dying was to become available for the first time in NSW. 

Gunter had been following the progress of VAD becoming legal in NSW. He had said many times that when his life became intolerable to him, he would end it on his terms. 

The cruise to the Pacific Islands was Gunter’s final bucket list item. Even though he was in a wheelchair, could not sit straight, suffered great pain in his head and limbs and had pronounced tremors, Gunter was determined to go and we were lucky to be able to celebrate an early 30th wedding anniversary.  

When we returned, we called the NSW VAD Care Navigators and had an appointment for the first assessment the next day. Dr Kathy gently examined my husband, and after a very anxious wait, said he was eligible to begin the process. Gunter was so relieved that he almost slipped out of his wheelchair - you could physically see the relief.

He said that he felt a huge weight had been lifted off him.

It was then a nervous wait for the second assessment with a different doctor, who concurred Gunter was eligible.

It felt strange going through the VAD process, then watching cricket and sitting sewing with my husband as if everything was normal. Well, as normal as it could be with my husband deteriorating daily and choking now even on saliva. All he wanted was strawberry ice cream and jelly snakes to suck on. But he never lost his spirit or the laughter in his eyes.

I was so incredibly proud of him and from somewhere was able to pull a veil of calmness over myself, even though I felt my heart beating in my chest.

The whole process from first contact to us having the substance in our home took 16 days.

We talked often about the process and felt very reassured with all the checks in the VAD process that the law was being followed to the letter.

Finally the day arrived when the substance was delivered. The whole process from first contact to us having the substance in our home took 16 days. It was now the 20th of December. We stored it in the walk-in robe. 

Every time I went into our room; I tried not to look into the walk-in robe but invariably my eyes would stray to the shelf.

At some times when Gunter was choking and gasping for breath or moaning in his sleep, I wished he would just take it so he could stop the suffering. At other times I felt like tipping it into the toilet.

He asked me if I could organise an early Christmas lunch with our family for the 22nd of December and we had a wonderful, sad, fun, emotional and uplifting day with our children and grandchildren. 

He was so happy and so sad at the same time. He was able to tell everyone how much he loved them and how he would always watch over them. He explained he wished to be alone with just me when he took the substance as he didn’t want a fuss and it was a private thing to him.

They were all understanding and some a little relieved.

As our daughter drove away crying, she stopped the car and ran back for one last ‘I love you dad’. This was almost his undoing. He slumped in his wheelchair when they all left and said that was the hardest thing he had ever done in his whole life.

I could see in Gunter's eyes a kind of quiet determination. 

The day before Christmas he had a terrible choke and I’m sure that some soft drink went into his lungs.

He said to me he wanted to practice the procedure of the way he was to take the medication.

We did this several times, familiarising ourselves with the process while watching the cricket.  It still didn’t seem real to me, but I could see in Gunter's eyes a kind of quiet determination. 

After dinner he said to me out of the blue: ‘I am not feeling well, it's getting hard to breathe.

'I think I am going to take it the day after Boxing Day because I want to watch the start of the Sydney to Hobart yacht race. I don’t want to ruin Christmas for everyone and so the 27th of December is as good as any day'. 

He said that if he waited much longer he was worried he wouldn't be well enough, and he didn't want to go to hospital.

I sat there trying hard not to cry and I just said, ‘ok my darling if that’s what you want’. I asked if he wanted to go somewhere, maybe the beach or the lookout or out to the lake.

He said he just wanted to go to Mcdonald’s for a soft-serve ice cream and to the service station to explain to me how to put air in the car tyres. I was flabbergasted but just said ok.

We went to bed and I lay awake all night listening to him breathe

He also wanted to write down a list of things he wanted me to do when he was gone - it was three pages long!

We went to bed and I lay awake all night listening to him breathe, trying to remember the sound.

In the morning we went over the finances to make sure everything was in order. We had organised our plot at the memorial park and he had planned his funeral. 

By now he was quite sick with, I’m sure, pneumonia. I got up before 5am and did the washing, all the time thinking - ‘I’m washing his clothes that he will never wear again’. I burst into tears, and cried and cried.

We just sat holding hands, like we used to do. 

When it was time to get him up, he was not breathing very well. Before I said anything, he told me: ‘I’m not going to hospital'.

All day we seemed to be doing things on two levels: watching the start of the yacht race and re-reading the VAD paperwork. We just sat holding hands, like we used to do. 

I felt a calmness come over me. This was really going to happen, and I had to be as loving and supportive as I could be for the next 24 hours. 

That night we lay in bed talking, crying, laughing and reminiscing. We left nothing unsaid. It was a gentle, peaceful and very special time for the both of us.

At 3am Gunter needed to go to the toilet so I got him up and he said, ‘do you mind if I do it now - I don’t want to wait till 7am as I had planned and neither of us will sleep’.

And at 3.50am my brave, dear, sweet husband raised the glass looking at me for the last time, said ‘cheers’ and took the medicine. He fell asleep in my arms a minute later. 

He took his last gentle breath less than five minutes after that, still in my arms. Our full stop had been placed at the end of our chapter. He was finally, after 12 years of medical problems and unbearable suffering, at peace.

I loved him two weeks after meeting him and 30 years later I loved him even more. I loved him enough to support his decision and I stayed strong for him even though sometimes I wanted to scream - ‘stop I’m not ready to lose you’.

I am proud of him and I am proud of myself.

I feel a terrible loss but I also feel at peace.

He was able to end his suffering with dignity, grace and love for us all

Without the VAD team this would not have been possible and I am eternally grateful.''