End of life care forms a significant part of your role as an activity coordinator, and is perhaps one of the most challenging.
There are a lot of things to think about during these significant moments. How to communicate the news to other residents, how to allow meaningful time for people to say goodbye, and how to involve and support relatives – these are all aspects that need to be handled respectfully and smoothly. Do you prepare tributes or celebration of life services in your home? Do you maybe run sessions to involve other residents in celebrating those who have passed?
In May, we ran a very thought-provoking competition, looking at providing end of life care for residents – how you do it, and how you celebrate the life of a resident who has passed away. We have collated and shared all the entries we received, as each home had its own special way of remembering and acknowledging each resident as they passed away.
In the days before a resident passes away, there are little things you can do to make those days peaceful and as happy or positive as possible.
“We put a butterfly sticker on the door, which notifies everyone that it is time to say goodbye, and we pay special attention to make saying goodbye easier.” (Thanks to Roberta Cretu, Ivelhurst.)
“Respecting the person is important, no matter their culture, beliefs and requests. Natural light, music, comfortable position, somebody present, holding their hand, talking and celebrating their life and all you will remember them by.” (Thanks to Anabela Teixeira.)
“We have music, lava lamps, hand massages, and we always invite the families to join in these activities. We ensure the room is calm and quiet, with smells that we know they like – whether that is lavender or the smell of home cooked bread.” (Thanks to Charlene Rosewarne, EastHill Care Home.)
Training and Guidance
Local hospices will often offer training for end of life, which means some of your care staff can become particularly well equipped to help everyone through this time, and to be respectful of the resident and their family.
“We have had training from our local Mary Stevens hospice, and we now have eight end of life champions. These all help with supporting other staff members to be able to look after those who are towards end of life.” (Thanks to Rachel Davenport.)
“Lent Rise have joined the Gold Standards Framework for Care Homes Programme, which aims to build on the good work already present in the home, to develop the very best quality of care for residents in the last years of life aiming for a gold standard of care. Supporting residents to die well means the whole team is involved, with effective leadership and team-working.” (Thanks to Junior Walker, from Lent Rise.)
Some homes are equipped to offer funeral or memorial services at the care home, which can be very special. Kay Bullock, from one of our competition winning care homes, explains how her team handle this. “Working alongside our wonderful Revd Andrews, who works full-time at the home, we all work in partnership to create various ways to remember and celebrate the life of the resident who has passed away. Revd Andrews has various meetings with relatives to discuss how they would like the home to remember their loved one. If we are having a service at the care home, we start with a Guard of Honour, where the coffin is brought into the home where relatives, residents and staff hold a one-minute silence lead by Revd Andrews.
“We share reflections and memories that are gathered together from relatives, residents and staff, and afterwards we have a remembrance book, displayed for everyone to write any memories and messages for the family to have and cherish. For memorial services, we begin with a prayer, and relatives, residents and staff read out reflections. I accompany this with a PowerPoint presentation displayed on a projector of a collection of pictures of the resident, their life story, memories and videos with music played in the background. We finish with The Lords Prayer and serve refreshments.
“We all adore our residents and understand they have created strong loving friendships and relatives, and staff are also grieving. We aim to ensure we support everyone to say goodbye.”
Celebrating a Life
It’s important for those left behind to feel that they can share their memories of the residents who have passed and that they’ve got somewhere to go where they can be reflective.
“For most of the patients I know, it is their biggest fear that no one will remember them. It’s important that the residents, therefore, get given a chance to say goodbye, as well as talk about the person and the positive things they will remember them by. When they are gone, plant a tree in the garden or have a memorial space with names engraved.” (Thanks to Anabela Teixeira.)
“We celebrate the passing of each resident by decorating our garden wall with a commemorative butterfly celebrating each of our residents’ lives. We also have a remembrance book in our garden room, and this has details of which butterfly is dedicated to each resident.” (Thanks to Belinda Piovesana.)
“We have a rose memorial garden where once a year we hold a rose memorial service with the help of our local vicar, we invite family, friends, past and current residents, and also the local community to come and celebrate with us.” (Thanks to Charlene Rosewarne, EastHill Care Home.)
“We have a sensory memory garden, where our residents can sit and think about past residents with family and friends.” (Thanks to Lizzie Penman-Green.)
“We create flower arrangements made by residents from wreaths donated by families, and have a remembrance book with photos and a board in a quiet area which enables us to share thoughts about those who have passed away.” (Thanks to Roberta Cretu, Ivelhurst.)
Part of the Family
Ensuring that relatives and families feel part of what you are doing is so vital. They need to be as involved as they wish to be in everything that happens in their loved one’s last days.
“Providing end of life care is a privilege, and we support everyone through the end of life journey. What is wonderful is that we continue to have visits from family and friends years later who continue to get comfort and support from the staff – a true family.” (Thanks to Jackie Box.)
“Death is a very natural experience and part of one’s own life journey. We want everyone who is with us at the end of their life to have that natural experience. We like to remember them in our hymns and reflections, we have a quiet moment in the service to remember the friendships gained from knowing that person, and a thought for the loved ones that are left behind. Each passing is like losing a dear friend. There are many ways to remember people, but the best thing is never forgetting them.” (Thanks to Sally Godfrey, Walstead Place.)
Of course, for some residents, who have little or no family left, it falls to the care home staff to be there in someone’s last days.
Activity coordinator Chris Bourne explains how he made sure to listen to one of his residents and help ease his passing in exactly the way he wanted. “Recently we had an Irish resident pass who had very little in the way of family. I sat with him every day and just listened to Irish music, because that’s what he wanted. It gave him comfort. We are honoured to be spending a residents last remaining time on this earth with them, and helping them and their family celebrate the life they had, both outside and inside the home.”
Making things Personal
Crucially though, end of life care is simply about love, and about compassion. This beautiful story from one activity coordinator speaks volumes about how much simply knowing someone can help them the most in those last days. “Percy was in care because of abuse. He had no-one and no money. He was very withdrawn, did not speak or walk. We gave Percy love, hugs and cuddles. He loved drums, Yarmouth and his cat so we made a set of drums, and his life had worth again. Eventually, Percy died and so did his cat. The vicar conducted his funeral free of charge. The vicar was regaled in robes embroidered with scenes from The Broads, and we left the church to the sound of ‘Show me the way to go home’, everyone doing the conga to the crematorium. After the cremation, we celebrated his life with a party. Now, Percy is resting in peace.” (Thanks to Sandra Edmonds.)
We also love this story from Lizzie Penman-Green, who shows how personal you can make these moments. “We had a resident who passed away five days before what would have been her 98th birthday. With her family’s blessing, and at the residents request, we still held birthday celebrations in her memory. We had balloons and a large picture of her on show. We shared our memories of her in a group setting. She was known as Queenie, and once danced for Great Britain. That evening we were joined by ballroom dancers, and we each wore crowns and sashes that said ‘Birthday Queen’ in her honour.” (Thanks to Lizzie Penman-Green.)