Empowering People to Look After their Loved Ones as effectively as possible

As an experienced palliative care professional, Sue Marshall knows exactly the sort of pressures that families are under in looking after those they love as they approach the ends of their lives. “It’s difficult at the best of times, but the pandemic has changed everything. If people are in denial about the approaching death of someone they love, or they’re fearful they won’t be able to cope, it’s natural to think that expert care in a hospital or hospice is the best option. Under the current circumstances though, increasingly people want to stay at home, or their families want to keep them at home, simply to avoid the spread of covid as far as they possibly can, and so they can be sure of being with them.”

Sues’s own beloved father – who had been under our care for a number of years because of respiratory disease and advancing dementia – was in hospital over the lockdown period, having had a fall in his care home. “He’d had a hip replacement, then another fall in hospital and we were told by the consultant that he was approaching the end of his life. My absolute priority was to get him home to be with me and the family for however long we had left together, and thanks to ellenor, this proved possible.”

The hospital would only release Sue’s father once the necessary equipment – a surgical bed and oxygen – were in place in her home, something that our team was able to provide quickly “And that wasn’t because I work for ellenor, it’s because my father was under the charity’s care – it’s a provision that’s available to any patient.”

Although Sue’s father only lived for another couple of days, they were rich ones in which he displayed customary flashes of strength and humour. The family were able to say goodbye to him in their own space and under their own terms.

“So much of our fear of death is hereditary,” reflects Sue. “Families will say ‘Auntie Dot had a painful death’ and that memory stays with them, making them reluctant to contemplate handling the death of a loved one themselves. But with ellenor's help, it’s never about handling death on your own – it’s about being empowered and supported every step of the way. Under those circumstances, people can – and do – have good, comfortable deaths surrounded by those they love and in their own homes.

“I’m part of the team that walks beside those who are dying and their families, ensuring that they remain in control as much as possible, and we will only step in when we’re asked to – we’re never more than a phone call away. I’ve worked with families who, though initially in denial about someone’s imminent death, have been supported to take care of their loved ones so that they can die comfortably at home. I know from my own family’s experience that the result of this sort of death is a sense that you’ve been part of something meaningful. You’re not left with any regrets because you’ve been so involved with your loved one’s care as his or her life draws to an end. My father’s wish was to die at home and with our support, we were able to bring him home where he died peacefully, surrounded by people who loved him. This experience made our family stronger and at peace, knowing that we have done everything we could”.

Here at ellenor, we work hard in all sorts of ways to destigmatise death both for the patient and their carers, and to remove much of the fear that surrounds it by ensuring people are aware of what they may be .” All of us left behind are at peace as we had those invaluable days with him. Sue herself works as part of our education team and as such is involved in delivering a session for the six-week course for carers that offers advice on everything from feeding those who are unable to feed themselves to ensuring families are fully up-to-speed with the benefits to which they may be entitled. Says Sue, “We have to keep working – particularly with younger people – to get them to understand that death isn’t the end of life, it’s part of life’s journey. Families who are able to share that journey together will never forget the experience and are likely always to be comforted by the fact that that they made that journey together.”