‘Deprived of a final goodbye, the grief is indescribable’

The Covid-19 lockdown has been a "living nightmare" for 87-year-old Kitty Brennan and her family. Her son Simon, who had been in the final stages of motor neurone disease, or MND, died in London on April 26th at the age of 53, without his mother, two brothers or his sister by his side.

Because of the restrictions on travel during this pandemic, Kitty, who lives in Arklow in Co Wicklow, was not able to go to London to say her final goodbyes to her son, or to attend the funeral, which took place in a crematorium near Hampstead Heath on Wednesday.

“For close family members, deprived of any means of saying goodbye in this surreal situation, the sense of grief is indescribable,” says Kitty, whose two other sons, Mark and Paul, live in California, and whose daughter, Katherine, lives in Kent.

Simon was diagnosed with MND less than a year ago. In October 2018, he had noticed a slight slur in his speech, followed by an increase in his anxiety levels. Over Christmas that year, believing he was suffering from stress, he decided to take a leave of absence from his job as a derivatives broker in the City.

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Last May, tests confirmed that he had progressive bulbar palsy, the most aggressive form of motor neurone disease, which mainly affects the muscles in the face, throat and tongue. The prognosis was poor; most people with this form of MND die within a year or two.

“This was the most devastating piece of news, because there’s no way back from it. If you’ve got it, you are going to die,” Kitty says.

“Many people in a similar situation would just have retired and gone into their own shell, but Simon set about fundraising and raising awareness of motor neurone disease.”

A keen athlete, Simon loved cycling, tennis and boot camp training. He had run the London Marathon twice, and the summer before his diagnosis, had completed an Iron Man race in Norway.

Shortly after his diagnosis last June, he cycled from Cornwall to London to raise funds for the My Name’s Doddie charity, founded by Scottish rugby player Doddie Weir who was diagnosed with motor neurone disease in 2017. His son Freddie and brothers Mark and Paul joined him on the 435km bike ride, raising more than £100,000. In the months before he died, Simon raised a further €250,000 for the charity.

“He was losing his ability to speak, and move. In the last few months, he only had the ability to move his eyes,” Kitty recalls. Right up to the day before he died, he was able to send the family text messages using eye-gazing technology, which converts movements of the eye into words.

“All this time, when you would read his texts, you would not have known he was paralyzed, that he couldn’t eat, that he had to be fed through a tube, or couldn’t walk. He had a tremendous sense of humour, which kept us all going. I would send him videos or recordings of music he liked.”

Over the past year, Kitty travelled back and forth between Ireland and London once a month to spend time with Simon. The last time she saw him was in early March. She had a booking for early April, but by that stage, the Covid-19 restrictions meant she couldn't travel.

“The risks were too big, that I could get over there but not get back,” she says.

Paul had visited Simon in February, but Mark, who had booked flights from California to London for March, was also unable to travel to see his brother, after Donald Trump suspended travel from Europe into the US on March 12th.

“My daughter, who lives in Kent, was the only one who could get up to see him, and even that was closed off in the last month or so. It was heartbreaking for all of us.”

Kitty got the call from Simon’s wife Sophia on April 26th, informing her that her son had died at home in Highgate in North London.

The funeral was limited to seven people: Simon’s wife, Sophia, his children, Freddie (24), Orla (23) and Juno (19), Sophia’s brother and Simon’s best friend.

“The crematoria in London are so busy, there are queues of people to be cremated, it is horrendous. They had a 20-minute slot to say their final words and play a piece of music.”

While the service was taking place, Kitty was at home alone in Arklow.

“The undertaker recorded the service and I will receive that in a couple of days. I had lots of friends who wanted to be here while the funeral was on, but I didn’t want that,” she says, given the current social distancing restrictions. Her niece and her partner came to stay with her that evening.

The family are planning a big celebration of Simon’s life, organised by Sophia, for October.

“The way of getting over a bereavement is to be surrounded by family and friends,” Kitty says. “And the idea of having to do it this way is just so hard. I do have a couple of good friends and we do our social distancing in the garden. So I consider myself privileged to have that space outdoors.”

Simon and two of his siblings were born in Rome, where the family lived for 10 years before moving to London. Kitty came back to Ireland to live in Arklow, where her husband was from, in 1991. Her husband's father – Simon's grandfather – was Arthur B Brennan, who founded the original Brennan's Bakery.

“Simon was an amazing person,” Kitty says, “ the sort of person who always made friends and held on to friends. He was tremendously considerate of other people, and in the family, he was our shining light.”