Helen Holt manages Livability’s York House Ossett, a a residential service home for over 20 adults who have physical and intellectual disabilities. Helen has over 40 years experience in working in care homes and tells us why she thinks it so important to get support at this time.
Tell us a bit about yourself?
I’ve worked at York House for over 40 years. We support disabled people, many of whom have very complex needs. I’ve worked with many residents and families over the years and like so many of our care homes we’re experienced in working with family and friends of residents with end of life care.
Why is end of life care so important to the individual and families that support them?
It is the last thing that we get to make any decisions about, it has to be right & it has to be what the individual has chosen to happen. A lot of the people we support are from all over the UK so communication, the logging down of wishes is key. As a staff team we need to know when to be there & when to move into the background so that families can be together.
It’s incredibly important to involve the family and to have open discussions around the plans that might be in place. To have open discussions around what their wishes might be such as funeral arrangements, can help ease the burden on the family or partner when the time comes.
Do families find it hard to think about arranging funeral when they’re grieving?
It can hard to think about a funeral at this time but where discussions have taken place and the wishes are already known it can be so much easier for the family. In fact many families are comforted by the fact that their loved one’s wishes have been followed and this makes things easier at a difficult time. With the restrictions in place during the lockdown funerals are even more difficult to arrange and many funeral directors are arranging services that can be attended online with memorial services also being held online or delayed. Livability will adapt to whatever the crisis throws at us and make sure we’ll continue working with the families to support them at this time.
We all grieve differently and Helen has seen people go through varying stages of grief. There are lots of different reactions. The major and most common reactions are shock, anger, grief, sorrow, protest, numbness, disbelief and ultimately acceptance and eventually moving on with life. Not everyone get’s all of these feelings and not always in this order. ‘I don’t think it’s always easy to recognise when grief is the reason you’re acting or feeling differently’.
How do you support families?
We try to support them as much as we can, we know families well, there is a fine balance to be had, we are often recognised by families as ‘second families’. A place where they can talk freely to people who knew their loved ones. Organisations such as Cruse Bereavement are excellent in providing support. They recommend you try talking about your feelings to a friend, family member, health professional or counsellor – or contact them directly to help.
Do you think remembering the person can help?
To help look forward it can sometimes help to look back and remember the good times. And many people find that remembering a loved one can ease the loss that they feel. In fact we often encourage this at York House and we’ve had families create a memory box or a memory book. Memory boxes can be a special box that can be bought or made to put precious possessions such as letters or cards from friends, dried flowers from the funeral, photographs or treasured possessions of the person who has died – for example a piece of jewellery, their glasses, a diary or letter. We also have Celebration of Life services that are quite different to a funeral service & are often quite a joyous gatherings where we all share individual memories.
To find out more on ways to support in memory of a loved one, visit: www.livability.org.uk/get-involved/give-in-memory/
Dying well is not easy to talk about but at Livability, we know what a difference good end of life care makes to families and their loved ones. Often this involves thinking ahead as someone’s illness progresses, to make plans that will be a comfort in bereavement – as for a resident and his family, at a Livability residential home.
When this person’s advancing MS required an increased level of care, they moved to Livability York House in West Yorkshire to be closer to his partner and daughter. A former professional driver and martial arts enthusiast, his condition now means he is a full-time wheelchair user requiring 24/7 care, with his speech and memory increasingly affected by MS.
After a hospital stay earlier this year, Livability staff raised the idea of creating a memory book for his young daughter, in case he would not be around for milestones in her life. They discussed this with him and his family, who wanted to go ahead.
Staff support Leigh to add to the book when he wishes – something they count a huge privilege, says manager Helen Holt. ‘He dictates life tips to staff and his thoughts about his daughter when she was a newborn, when he is able. Personally, I feel that it is a great honour to be allowed into someone’s life in such a way that they are sharing their innermost and private thoughts.’
The memory book is kept secure with staff able to access it, as he cannot always remember where it is kept. A member of staff offered a special memory box for the book and other items, with a message on the lid that reads: ‘When someone you love becomes a memory, that memory becomes a treasure.’ The box’s contents include special items for his daughter.
Family visit him every day, says Helen, ‘and is an amazing support to him and us – she will come in ten minutes if we call her.’ His daughter is part of the York House family too: ‘To her, this way of life is the norm. When dad is on his bed because he’s too weak to sit up, it’s ok because she just climbs on the bed. Nothing at the service phases her because she sees the people here, not disabilities. She is like a blast of fresh air when she enters the building – we all know that she is here!’
Helen represents many experienced managers across Livability’s services whose teams are trained in issues around end of life. Dealing with such a sensitive aspect of life is something Livability sees as a vital element of good care and support.
‘This shouldn’t be unusual – it needs to be on offer as the norm,’ says Helen. ‘Discussions about death should always be on the table because it’s a natural progression for everyone. Sadly, some people will be taken way before they can reach their threescore years and ten, so an open opportunity like this should always be there.’