Despene Sattler: Watching my husband fight the disease that made him a stranger

It has been 11 days since we buried Howard Sattler, my husband of 25 years. It was a second marriage for both of us and our time together was cut short in a way that was as devastating as it was unexpected. Neither of us could have imagined that the last 10 years would turn out the way they did and that he would succumb to a rare degenerative neurological disorder on June 11. His death from this cruel disease was always going to happen. It was a spectre that enveloped us every day and tinged both happy and sad occasions. Our very happy marriage had been tarnished. It started with slight changes to his personality, he wasn’t acting like himself. Then there were the physical changes, so minuscule that it was difficult to decipher whether they were there or not. We thought his new shoes were the cause of his changed gait. Or the slight slurring of speech that came and went might have been due to the glass of pinot he so enjoyed the night before. It was now 2011. Yes, we were in denial for a long time. Eventually, he sought more medical advice. A slight stroke was one suggestion. Then that was ruled out. It took more appointments, scans and then finally, a neurologist who said that it might be multiple system atrophy. We Googled it and didn’t like the diagnosis. So, we went to another neurologist, who decided it was Parkinson’s disease, and because we liked the sound of it, we went with that diagnosis for about three years. There was no tremor in his hands but his balance was getting worse. In our hearts we knew this was not Parkinson’s disease. We spent long hours on research and his deterioration was not going to plan. In the end it was our sensitive and caring neurologist, who had initially diagnosed Parkinson’s, who came up with an answer to the questions hanging over us. I had told him I feared that we could be dealing with something even worse. HE WAS GOING TO DIE He had himself suspected for some time that the beast that had robbed me of the man I had married was a very rare neurological disorder called progressive supranuclear palsy. Now referred to as PSP, it is a disease so rare that there is very little research or attempts to try and find a cure. Very small numbers meant little to no funding for medical trials. Hearing those words confirmed what we had suspected but never dared to say out loud. He was going to die. But not only die, he would die badly. It would be a long, slow and cruel existence till the very end. He lost his speech, he lost his mobility, he couldn’t eat the foods he had always loved because there was a choking hazard and yet his brilliant mind was still as sharp as ever. He was trapped in a body that prevented him from communicating his thoughts, ideas and opinions. The very things that made him the successful journalist and broadcaster he had always been. The job was gone, his independence along with it and he was reduced to outings with carers or myself. A fiercely independent man now shackled. Never to drive again or even to walk the course at the golf club he loved so much. His golfing mates were amazing. They organised a golf buggy and would support him to the tee. Then he would swing that club like there was nothing wrong. We never could work out why his broken body still enabled him to hit the ball just as well as he had for his whole golfing career. The next indignity was the loss of his sight as the muscles around his eyes clamped shut. We tried Botox which helped at first, but then lost its efficacy. He was now blind. Cable television, news broadcasts, current affairs programs and his beloved AFL football could now only be heard, never to be watched again. His last years became a blur of appointments, carers and frazzled nerves, exhaustion and dependence on pain medication, delusions and irrational behaviour. FIGHTING SPIRIT I was living with a stranger. The man I had married was no longer there. He didn’t look the same, the disease had ravaged his body and twisted his face, legs, arms and hands. His once distinctive and commanding voice had been reduced to at best a raspy whisper before it went almost altogether. But he was strong. He tried alternative methods. Punishing himself with exercise regimes, hyperbaric chambers, speech pathology, physiotherapy and peddling on a mobile cycling unit. The last year of his life consisted of one indignity after another, yet he persevered. He pushed himself to stay with us, continuing to use his breathing device, eating healthily and insisting his grooming regime stayed the same. There were days when he demanded that I contact the advocacy group Go Gentle and get the forms organised for voluntary assisted dying. A euthanasia Bill had been passed in our State and was due to come into effect 20 days after he died. He had campaigned publicly for assisted dying, death with dignity, for most of his career. DEATH ON HIS OWN TERMS Had he lived long enough he would have used the chance the legislation would have given him to ease his passing. But I am glad he left this world naturally and on his own terms. The idea of euthanasia did not sit well with me. His passing was peaceful and natural and I was able to hold his hand till the very end. A pill designed to end someone’s suffering is wonderful but for me, I would have never been able to reconcile the fact that I had aided and abetted his death. My loving husband mercifully spared me the horror of watching him being “put to sleep”. Looking back on those years, there were many happy events: weddings, grandchildren, new jobs and promotions. Despite his suffering he rejoiced in them all. The years were tinged with disappointments and family estrangement but he took it in his stride and made the best of the life he still had. He had lived a big life in the media and beyond. It wasn’t all miserable and there were times when we joked about his falls, rating them from ordinary to spectacular. Or he laughed at the tedium of only being able to eat pureed food. BEING HIS CARER WAS HARD The visits with his old friends, the grandchildren and his favourite carers cheered him up at a time when I could only wonder how he managed to continue to glean every ounce of enjoyment he could. He always made the best of each day. The burden of caring for him took its toll. I was exhausted and sometimes short-tempered. He always forgave me and apologised that he was putting me through this hell. When he couldn’t speak properly and I had left him with a carer there were times when I ignored his calls. I knew he was safe and I was annoyed he was encroaching on my time off. I look back on my caring role now and see that it was a tough gig but it was a gig I was privileged to do. The idea of putting him into a care facility was never an option. He was firm about wanting to stay at home. I agreed. But it came at a cost to my own health, I lost a lot of weight and was constantly fatigued. There were times when I pushed people away because I was tired or I didn’t want people to see him so diminished. Friends found it difficult to cope with his deterioration and some stopped visiting. He didn’t understand. But I did. Despite the ravages of the disease, his vanity and compulsive grooming even on days we weren’t expecting visitors always amazed me and reminded me that the man I had married was still there, somewhere inside the body that wouldn’t work. He had always been careful with his appearance. His job in the media demanded it and even in his last days he wanted a shave, moisturiser and cologne. When his condition deteriorated to the extent that it was no longer possible to stay at home, he was admitted to the St John of God Hospice in Murdoch. The caring staff obliged him and patiently met all his grooming requirements. It was bizarrely comical that he regretted he hadn’t had a back wax before his admission. OUR LAST GOODBYE On his last morning at home, I had showered him, shaved him and dressed him in his favourite jeans and sweater. When the ambulance crew arrived, he refused the stretcher and with Herculean strength left the house for the last time by walking, albeit with some help, to the ambulance. He was brave, strong and a wonderful man and he didn’t deserve the hell this cruel disease had turned what was left of his life into. While he didn’t welcome death, he wasn’t afraid of it. His advanced care plan was very specific and included a strict no resuscitation stipulation. By the end, pneumonia set in and without pain he drifted away to finally be free. There is a void now where he should be. I refuse to mourn the sick man I buried and will always remember the clever, cheeky and handsome man I had fallen in love with so many years ago. No matter how bad the day had been or how many times I complained, he always managed to get out the words, “Goodnight, my darling. I love you.” As I kissed his casket I repeated those words for the last time: “Goodnight, my darling. I love you.”