Remembering Lesley

Lesley Amos passed away on 8 September 2022. Her husband, John, had been planning to visit Lesley in her care home that day but got waylaid by the news of the Queen’s sudden death that afternoon. When John got the call from Lesley’s care home it was too late. Lesley had died peacefully in her sleep.

Lesley and John had been married for 47 years. Together they raised two sons and had five grandchildren. Lesley was caring, always willing to help anyone that needed it and never let anything get her down. She enjoyed theatre, musicals, cooking, growing vegetables and flowers in the garden, and travelling the world with John.

At the age of 62 Lesley was diagnosed with young-onset Alzheimer’s. John had been taking care of her at home but, after two years, reluctantly agreed that she should go into a nursing home. This was a very difficult decision for John but Lesley’s disease had progressed and remaining at home was no longer feasible for either of them. John remained dedicated to Lesley and for six years visited her in the care home every day, supporting her to eat and drink as well as simply spending time together.

On 9 March 2020 John and Lesley’s lives were turned upside down again when John was suddenly shut out due to the pandemic. John spent the next two and half years campaigning tirelessly to be allowed to spend quality time with his wife again. He called, emailed and wrote to the care home, the local authority, his MP and anyone else who might help. He challenged the care home when they weren’t following the Government’s visiting guidance, at times making headway but also hitting many brick walls.

I was very privileged to have Lesley as my wife for 47 years and I miss her, and her smile, terribly

John only wanted to be with his wife but was forced onto a cruel rollercoaster of emotion. When Lesley stopped eating and drinking in October 2020 John was permitted end of life visits. After a few days with her husband Lesley rallied and recuperated. However, John was then told end of life visits were withdrawn and they were back to meeting two meters apart. With Lesley’s advanced dementia, these ‘visits’ resulted in no interaction at all.

John was supported by R&RA’s helpline and joined our campaign to End Isolation In Care, becoming an outspoken lobbyist for change. He shared Lesley’s story with Parliament’s Joint Committee on Human Rights in January 2021. He spoke passionately to MPs and Peers at a Parliamentary event in March 2022, convincing them of the need for a new legal right for Lesley to a Care Supporter, so that he could be with her to help as she needed. John continues to work with R&RA to make this a reality.

Being a part of Lesley and John’s journey these past couple of years has been a privilege. At times we have been heart-broken by the barriers they faced to be wife and husband but we have also been inspired by them. No-one should have to battle to be with the one they love. If we were ever in this position, we can only hope that we would have someone like John in our lives, fighting to sustain our relationship. We are thankful that Lesley and John got to spend quality time with each other in her final months, and with the wider family. We will continue to push for a change in law so that people like Lesley will never be in this position again.