Moving tribute to a son who died while taking ‘antipsychotic’ drugs.

Editor’s note: the author wishes to remain anonymous.

MY SON  – MOTHER’S RECOLLECTIONS

The last week I spent with Chris, my son, was lovely – picking him up on the evening of Sunday 16^th December 2024. We, (my husband and I), had been on holiday for three weeks and Chris was going to stay with us for four days to help with Xmas preparations.

We went shopping, Chris pushed the trolley and encouraged me to buy pickled eggs. Chris ordered a new PlayStation controller for the console we had upstairs. We visited my mum where he helped her make decisions about savings options, as well as my dad where he put up Xmas decorations and we went to see the film ‘Wicked’. It was the second time he had seen the film.  At the end he was choked up and said that he was nearly crying. “Is that because you feel ostracised and misunderstood like Elphaba” I asked?

“Yes,” he replied.

After the film, I understood so much better how Chris felt. I recommend it. During those four days Chris said his future life was bleak – he was also concerned that the friend he lived with might get back with her ex-partner.

On Friday 20th December at 3.30pm, Chris’s Community Psychiatric Nurse (CPN) phoned me, saying she couldn’t contact him. I also tried and wasn’t successful, but I couldn’t call his CPN back, because it was a withheld number. When I next saw Chris, on the 21^st December, I asked him to call his CPN. Chris said that his phone wasn’t working properly; it wasn’t ringing. Data sharing only flows one way, from the family to the NHS professionals, but not vice versa.

On Saturday 21^st Chris came over, having planned to go to ‘Glow Wild’ at Wakehurst Place with us and his eldest sister’s family. Chris asked if he could help with lunch, and he set the table for us all. He told me his friend had had an operation. Chris had won a karaoke machine at Bingo the week before – he and his sister sang two Disney Duets together (what a precious memory). But Chris had already told me that he might not be able to walk round ‘Glow Wild’ because of his back ache and muscle cramps. When it was time to go, it was raining. Chris said he wouldn’t come because he was getting over pneumonia.  Later, he left our house to go and stay with another friend for the night – his last words to me were, “I might need to go to hospital, I need to go to ‘Assisted Living’”.

Chris had been saying he wanted to go to ‘Assisted Living’ for the past year. He had applied but been turned down two months earlier in October 2024. He thought it would be a place where he belonged and where people would not look down or laugh at him.

Chris had also been to see the GP recently to ask for the Ozempic diet injection, to try and achieve weight loss, but this had also been refused. Chris told me that children were laughing at him. He always thought about what he wore and would wear colourful shirts, his appearance mattered to him.

On the Sunday evening of 15th December, I had picked Chris up and he said he had seen an alien abduction – his tone was inexpressive. Chris didn’t answer when I asked him what he had seen and suggested that he didn’t appear bothered by it. The following evening, I gave him a copy of the ‘Safety Plan Strategies’ he had written during a CBT course – he read it thoughtfully. The next day Chris said, “you are right mum, I have been thinking too much”.

On Chris’s ‘Wellness Recovery Action Plan for suicidal ideation and overwhelming anxiety’, triggers that Chris had identified were

• Existential worries.
• When I don’t see a solution.
• Perceived social judgement.
• My spirituality being undermined or questioned.
• Fear of being alone now and in the future – not being able to cope.
• Spending lots of time alone.
• Fatigue of ongoingness of anxiety.

The solutions included – ‘distracting yourself and learning new things’.

Chris enjoyed academic research. He also had a strong interest in what happens to you when you die. When others watched TV, he was often on the internet looking up the latest ideas for health, the environment, scientific discoveries etc. or playing computer games – his hobbies.

We did not know that Chris was a suicide risk until after his passing – after we inherited his medical reports and CBT journal.

Chris had talked about anxieties since he started on Paliperidone (October 2022) but never talked about ending his life. When I read his ‘Action Plan’, drawn up during his CBT course in September 2024, I thought, “What’s all this about suicide? It doesn’t apply to Chris. I suppose it’s all part of the course.” We and his friends were Chris’s care team, but we were excluded from this vital information. If a person is a risk to themselves, however slight, ‘Data Protection’ should be voided.

Ever since Chris started Paliperidone, he suffered horrendous anxiety, had panic attacks and found it very difficult to live on his own. He had put on a huge amount of weight and his world became limited to the quiet town where he lived.

Chris’s words to his psychiatrist during a phone ‘meeting’ on 25th September 2024 were “I have been having hot and cold sweats, my heart has been having palpitations, my tongue is cramping and is uncontrollable as well as my chest and ribs cramping. My colleagues at work have noticed and I cannot do my work properly. They have expressed serious concerns and have said I need to get my medication sorted out. My singing teacher has also noticed my tongue cramping and has shown concern. The side effects have become unbearable. I also don’t like being constantly anxious and I want to go back on Olanzapine. I am suffering with negative symptoms now, depression, anxiety, cognitive and memory problems……. I can’t do it mum; you speak to her”. I said “I am very concerned about my son’s tongue cramps, I don’t know how dangerous it is? I am concerned that he might get Tardive Dyskinesia. Chris has been to A&E twice in the last month with heart palpitations. He has put on at least 3 stone with Paliperidone”.

Chris also wrote down his side effects from Paliperidone: “left me with panic, anxiety, cramps, restlessness, lack of ability to concentrate, suicidal thoughts”. I believe Chris had been asking to switch to Olanzapine for well over a year, but his requests were denied. He was adamant that he did not want to be on Risperidone since he had previously reacted badly to it. Imagine our shock when we read in the toxicology report that Paliperidone is the active metabolite of Risperidone. It’s hardly surprising that Paliperidone shares the same side effects in common with Risperidone – rapid heart rate, an irregular heartbeat, anxiety, depression, irritability, and Parkinsonism.

In 2021 Chris was taking Quetiapine. He would often go round to his friend’s house to clear up packets of pills after his friend’s suicide attempts. Chris said to me “I’m lucky I don’t have a problem with suicide”.

At age 18 Chris’s lifelong best friend was killed in a motorbike accident. Chris carried his casket on his shoulder at the funeral. A month later he went to university, and was trying to make new friends while grieving the loss of his best friend. Four months later Chris saw a university counsellor and was given antidepressants to ‘treat’ his grief. The counsellor also highlighted the fact that Chris could be homosexual. Realising that this was true but having grown up in a strict Christian sect, Chris understood it meant he would be barred from the ‘Kingdom of God’. His friend’s death had also provoked an existential crisis – his friend had worked so hard at school but what was the point?

Chris excelled at school gaining six ‘A*’s and four ‘A’s at GCSE. He wanted to make sense of things and took four A levels – Physics, Maths, Geography and German, gaining AABB grades, and then a 2:1 degree in Geography with International studies (at the University of East Anglia).  In addition, Chris was interested in ecology, the universe, Egypt, how things worked, what you had been doing and what you were thinking.  He was interested in existentialism and loved to meditate and develop spiritual enlightenment; he investigated Eastern religions including Hinduism and Buddhism. As a young adult Chris was baptised privately, because as a gay man, he was not accepted into the strict religion he had been born into. But Chris had a strong sense of the presence of angels working in the world.

Everything Chris did was at full throttle. As a child TV bored him; he always wanted to be doing something. He dug a potato patch and amazed me that it was over two feet deep! I still pick the raspberries that Chris planted in the same spot.

Chris was always up for a challenge whether it was white water rafting, learning to sail, swimming 70 lengths or descending a black ski run.

Chris wanted to make the world a better place and prevent human suffering. He was deeply caring, yet enthusiastic and hardworking; he still tried to be ‘eco’ as he travelled to work even if it meant cycling two hours to his job at Tesco Freetime or Waviatech, where he worked in customer support and sales. He took the district line to get to Aditus Audience Acquisition, and only finally succumbed to owning a car in 2012, when he worked at Niagra Healthcare and Esure.

Chris dared to be different. He visited six different places in Africa, travelling alone for four of these trips. One of these was during university when Chris went to research whether the provision of ovens would be beneficial, but what he found was that fire gave more than heat and light – in this culture, it was a social activity.

Chris was also a volunteer – he wanted to help plant trees in Ghana, however, when he arrived, there were no trees to plant, so he bought them himself. He returned two years later and found the trees had died because no one had watered them. He also discovered that the person he had sent money to, allegedly because of serious medical problems, had a motorbike and a recording studio, but no sign of any surgeries!  On his return to the UK, in 2010, Chris had his first breakdown. Unfortunately, we rushed him to his GP, which led to a short admission to the local mental health unit as a voluntary patient, where antipsychotics were started for the first time.

Chris volunteered again – this time to a charity that wanted to market strawberries from Kenya to Sainsbury’s. He was driven hundreds of miles from the capital Nairobi where the charity was based, to stay at a small village bed and breakfast with virtually no internet. Ever resourceful, he tracked down some punnets, bought the strawberries at a fair price from farmers, and with the help of a local, sold them at open-air tourist events. The local man might still be doing it now! But Chris soon became disillusioned with the so-called charity and returned to the UK having also lost touch with reality. Once again, we trusted the professionals and so began the revolving door.

Chris loved to laugh and loved making others laugh too. He loved to dance and in his younger days would be found on a Friday night in a club, rather than a pub. He loved singing – we would often have a YouTube karaoke at home. Chris loved to create fun for people. He also enjoyed going abroad eating different foods and seeing different ways people lived. He visited many different nations including Kenya, Ghana, Malawi, Zambia, America, Italy, Tenerife, Croatia, Germany, Austria, Switzerland, Luxembourg, Belgium, France and Spain. But when he went on a two-week Buddhist retreat, it was closer to home – in Brighton.

All this changed in 2014 when the psychiatrist suggested Clozapine. He turned into an 80-year-old man overnight, sleeping 18 hours a day. Previously his crises had resolved with 28 days, but this time it took months. Now, Chris could only hold down his part-time job working as a deputy manager at Oxfam, by working one day, sleeping the next. I felt he had been switched off. When Chris had another crisis, he ended up on Quetiapine. He was never able to work full-time or drive a car again.

Chris trusted psychiatry but I began asking for the scientific evidence that psychosis is caused by a chemical imbalance. A Judge agreed that I should be given this data and my ‘displacement of nearest relative’ case was adjourned. I am still waiting for this evidence.

In my opinion, Chris struggled with emotional distress because he was so deeply affected by human suffering. When he was low in mood, sometimes he distracted himself by creating a reality that he could control and understand. When he abruptly stopped the dopamine increasing ‘antipsychotic’ drugs, his body may have noticed – perhaps he produced an excess of a catecholamine to replace it and got a boost of adrenaline. Perhaps this fuelled the mania and increased his susceptibility to believe in this fabricated reality.

Before he died, Chris was on a depot injection of Paliperidone. Unable to stop his drugs, perhaps it meant that he could not get the huge dopamine rush – his previous escape route from emotional distress. As parents, we were only ever used to seeing signs of mania and this is what we looked out for. We had no idea that Chris was a suicide risk.

Personally, I am also using ‘a delusion’ to cope with my emotional distress – I delude myself that Chris can hear me when I speak to his ground up bones. My delusion is the result of my overwhelming despair, and since I am in a heightened emotional state, it enables me to bear the feelings, even though I know Chris cannot hear me. My delusion is a symptom of emotional distress not the cause.

Friendship was the quality that was most important to Chris. He was one of my best friends, but I know that he also made many other people feel that he was their best friend because the love he gave them was unconditional. Chris was my rock. He loved rocks – a new gemstone arrived in the post after he had left. Chris was a light in a dark world showing all of us how we should treat each and every person with kindness, honesty and gentleness.

Everyone liked Chris. He was polite, treated everyone with respect, always had a smile and a cheerful greeting. Chris cared for others, noticed when someone needed help and never had anything unkind to say; he showed real loyalty, never judging people, accepting them just as they were. Chris helped anyone – whether they needed something taken to the dump or the table laid, whether they wanted someone to sit with them while they waited for a hospital appointment or help to get rid of a carpet, alive with moth larvae. Chris cared about human suffering and volunteered for Save the Children, British Heart Foundation, Compass, a local Homeless charity, Sense, The Cat Protection League, Activenture and he was a Sustrans Ranger. Chris also shared his talent by running an art workshop for a local charity. At university, he was president of the Art of Living Society.

Chris loved being with people. He shared his flat and shared the food he cooked; he loved visiting and meeting up for coffees, going for walks with friends, and listening to music with others. If we went shopping or I just picked him up in the car, inevitably we would bump into someone he knew, and Chris would stop and talk to them. Chris talked to anyone, never leaving anyone out. Chris brought people together, organised cinema trips, cafe meet ups and invited people round for coffee. Chris engaged with everyone including those whom the rest of the world had given up on.

I am so proud to be able to call Chris, my son.

The author has given permission to view a video which was also made as a tribute to their son. Please click on the link. 

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Mad in the UK hosts blogs by a diverse group of writers. The opinions expressed are the writers’ own.