‘I’ll choose the date of my death’
After reading Eamonn Holmes’ interview, Alexander Pandolfo, a dementia sufferer, decided to speak out with honesty. He explains why – while he understands it’s not a choice for everyone – he believes we should all have the right to die with dignity…
When I read Eamonn Holmes’ comments in best last week about ‘pushing the red button’ to end his life if he was diagnosed with dementia, I was surprised. I was convinced I’d misread it, so I read it again.
Because that happens sometimes… I get confused when reading things. You see, I’ve been diagnosed with Alzheimer’s and I’m dying.
Just like Eamonn said he’d do, I’ve taken my own steps to ensure I can go to Switzerland for an assisted death when I need to. That’s my choice, and I believe everyone should have exactly that – a choice.
That became more apparent when my dad, Vincent, fell ill in 1999. He was a kind, proud, Italian man, who despised lewd behaviour. I can still remember him intervening when we worked on the buses together and were sitting in the canteen one day.
Some men were talking about their sexual conquests. My dad marched over and told them they shouldn’t be talking so disrespectfully. That’s just the kind of man he was. He adored my mum, Marie, and he took care of himself, running marathons in his spare time.
But in the late 1990s, we’d noticed him having mishaps, bumping into things and eventually he was diagnosed with multiple system atrophy – a progressive neurodegenerative disorder – and later, vascular dementia.
I gave up my job in education to move home and help Mum. My sisters, Anita and Gina-Maria, helped, too.
Dad’s deterioration was quick. He became scared, paranoid and even violent. Once he’d fallen asleep in the arm chair and I dozed off on the sofa. I woke up tasting blood and realised Dad was hitting me in the face, thinking I was a burglar.
He was devastated when he realised what he’d done. It wasn’t the only time he was violent.
In time, he became doubly incontinent and cried when he made a mess or I had to shower him.
He hated the lack of dignity and when he seemed well, he’d say, ‘Make it stop – help me die.’ I could see the permanent look of pleading and helplessness in his eyes. I don’t mind saying that if I could’ve ensured ending his life peacefully, I would’ve done it.
Being in prison couldn’t hurt as much as the pain I still feel for not helping him.
When dad died in 2005,
aged 73, it was a relief not to see him suffer any more. He would’ve hated being the angry, lewd person he’d become.
But I missed my best friend – we were all heartbroken.
Eventually, I went back into education – teaching and researching inclusive education.
By then, I’d been diagnosed with full-body gout and arthritis, which meant my mobility was affected and I was in constant pain. I’d had to stop my 60-mile weekend walks, jumping on my push bike and travelling as much.
But I could still take part in lively debates and conversations, which I loved.
However, by 2015, when I was marking papers, the essays didn’t always seem to make sense, and notes I’d scrawled at the bottom later left me confused. I struggled to remember dates, too.
Knowing something was wrong, I went to my GP, and, having seen Dad’s symptoms, I thought I might have dementia, too. I was sent to a memory clinic and for a brain scan, which revealed I had Alzheimer’s.
‘ You have five to seven more years,’ the consultant said. After much discussion, I was prescribed medication to try to slow down the effects of what I know is a horrible disease. I know it will kill me, but I accept it. I don’t want to worry myself to death in the meantime.
I’ve realised having dementia is like being in a relationship – sometimes you’re in control, sometimes they’re in control, and sometimes you get along perfectly.
Telling Mum about my disease was hard. ‘ You don’t want to go down the same route as your dad, do you?’ she asked. Despite her strong Catholic faith, she, like me, believed that her God wouldn’t want me to suffer. And that with a degenerative, incurable disease, you should have the choice when to end your life.
I told my family, my friends, and my partner, Poppy, who were all incredibly supportive. They found it difficult when I talked about assisted dying, but understood that I wanted a good quality of life. I didn’t want to lose my dignity and I certainly didn’t want to leave them with memories that haunted them, similar to those I had of my dad.
That’s just me, though. I believe that everyone should have a choice and be able to live how they want. I’m not suicidal, but I know I don’t want to go through what Dad did. I’ve had a good life, but I’m deteriorating.
Previously independent, I now get frightened going out, get confused by the noise of people talking on public transport and feel sick with fear in crowded places. I can only communicate with one person at a time, otherwise I lose the trail of the conversation.
I can no longer travel, which I loved to do, I can’t work and, devastatingly, I can’t be involved in debates with colleagues any more. I suffer time gaps and am unable to work out money when paying for my weekly shop.
My life has been devoted to finding peace within and for others. I’ve always been opposed to needless aggression and violence. Yet, now I find that I’m easily upset and experience episodes of anger and violence for no reason at all. Floods of tears follow this, knowing that it’s something I don’t want and cannot understand or control. I’m being stripped of who I am. Since my diagnosis, I’ve been in contact with Lifecircle in Switzerland, who support quality of life and assisted dying. I’ve put my affairs in order for when my time comes and started a Facebook page.
Not everybody will agree with my decision, but this is what I choose. I believe in safeguarding – that two medical professionals should agree a patient’s condition exists and cannot be cured, that you should speak to a psychiatrist to make sure you’re of sound mind and that a qualified person endorses this evidence.
Now, at 63, I have to ensure my illness isn’t so advanced that I can’t competently choose to die and pass a psychiatric assessment. It’s a juggling act, but one I fully intend to carry out.
‘Not everyone will agree with my decision, but this is what I choose’