Jolyon’s story: "My Admiral nurse made me realise that I needed to take care of my mental health"
Jolyon’s story of the emotional and practical challenges of supporting his sister with young onset Alzheimer’s from a distance.
Jolyon and Fiona
Brother and sister, Jolyon, 64, and Fiona*, 66, were close while growing up in South Africa, mainly on the beach, but after moving to the UK their paths diverged. Fiona worked as a city lawyer, while Jolyon’s architectural training frequently took him to the Middle East. This meant that they only saw each other occasionally. “Ten years ago, we barely knew each other. Time together tended to be at Christmas when we’d meet for family reunions in Cape Town.” Jolyon says.
He was subsequently based in Kabul, Afghanistan, which meant that he did not initially pick up on what was going on in his sister’s life in London. Something was amiss however, with memory loss impacting on her work. She also seemed to be emotionally fragile after a succession of unfulfilling relationships. “From a distance, it was hard for me to know what was happening to Fiona or what the cause for her struggles might be. It was hard to see her at times shaking and crying uncontrollably, and unable to explain why she was upset.”
Getting a diagnosis
Whenever he was in London, Jolyon would spend time with her and, when abroad, took to ringing Fiona every day to check up on her and provide a sense of daily routine. Increasingly, these calls seemed to become her primary source of social interaction, as Fiona’s friends in the UK drifted away, confused by her changing behaviour. “Although still living independently and on her own, over time she began to struggle with the simplest of tasks like operating a cooker. Any task that required a decision – what clothes to wear, what to eat – seemed to cause anxiety,” Jolyon says.
At times, Jolyon noticed that Fiona would be in a ‘dwaal’ – South African slang for a distracted state with no coherent communication. “I soon realised that she needed my support and that I needed to get to the bottom of what was wrong. Rather than a psychological cause, a neurological one became more apparent. ” Jolyon continues.
Fiona’s GP was highly supportive and referred her for memory tests, scans and MRIs – a process that took more than nine months. Finally, a consultant neurologist confirmed in late 2018 that Fiona, then 63, had the symptoms of Alzheimer’s. Rather than being devastated, her reaction was to turn to Jolyon and say: “At least we now know what it is!”
Supporting from afar
In Afghanistan, Jolyon has met Afghan friends for whom care and support for family is paramount. “My observation of my friends’ commitment helped me to realise that this was my responsibility,” he explains.
He set up weekly singing lessons to encourage her passion for music – which is something she’s done throughout her adult life.
In time, it became necessary to employ carers to visit Fiona daily, as she struggled with routine tasks and her communication became more limited. Jolyon explains that there were other matters to manage too: “On the advice from a mutual friend, I had an LPA set up that enabled me to legally act on her behalf and manage her financial affairs, tax and property. It feels at times like a full-time job – running Fiona’s life while she’s present only in the physical sense.”
Admiral Nurse Amy Kerti
Having been signposted to further dementia support by neurological specialists at Chelsea and Westminster Hospital, Jolyon met Admiral Nurse, Amy Kerti. Her attitude and good counsel was invaluable to him. “Amy was able to pick up my feelings of guilt at not being able to do enough for Fiona – she made me realise that I needed to take care of my mental health, otherwise I risked being overwhelmed and of no great use to my sister.”
Jolyon returned from Kabul and – with the support of Amy – moved Fiona into a larger flat with space for live-in carers just before the first lockdown of last year. After initially being disoriented by her new surroundings, she began to settle in and appreciate its space and bright character. “Lockdown led to a closer relationship to my sister, as I was able to be spend more time and do tasks like furnishing her flat, involving her in every decision.”
As a long-time expatriate, Jolyon was not as aware of the system in the UK as he might otherwise have been, and Amy’s knowledge and suggestions were crucial. “I would have struggled to find my way without Amy’s knowledge of the health and social care systems in the UK and her access to resources,” Jolyon acknowledges. “The Alzheimer’s support group which she hosts means that I could talk to people going through similar experiences. Amy was able to spot my reactions to discussions in the group and reached out to offer support after the sessions.”
The challenges of caring for someone from a distance
Commenting on her support for Jolyon, Amy says: “Caring for a loved one with dementia from a distance is emotionally and practically challenging. If the person lives alone, as Fiona did, the responsibility falls on a loved one to organise all medical appointments, bills, and affairs. Family carers may also be worried about how the condition may progress, and the social isolation that may come from their relative living on their own.”
For Jolyon and his sister, despite many challenges and geographic distance, a relationship has been re-built through the experience of a diagnosis of Alzheimer’s. A mix of common sense, compassion and willingness to listen to others has enabled them along this journey. “On her good days, Fiona and I reminisce about places we’ve been to and things we’ve enjoyed together; I’ve put together photo albums charting our family’s lives, which helps to bring us closer together. As does listening to her respond to – and sing along with – the songs of Purcell, Schubert and Joni Mitchell. Singing seems to transform her. Without the support and guidance from Amy and others, this would not be possible.”
*Names have been changed to protect anonymity.