Getting 'the call'
Featured article -
29 March 2016
By SCIE’s Information Specialist Sue Jardine, whose mother has dementia
Even though I thought I had prepared for this, it was still a shock when I got ‘the call’. I didn’t recognise the number, and when they said it was my mum’s care home, I knew it couldn’t be good news.
Hearing the words, no matter how gently put were hard to absorb, and due to the multitude of questions and emotions that flooded my mind, most of what I was being told I did not hear.
This call was not to say that my mum had ‘passed away’ as I expected, and in many ways hoped for, given her advanced dementia and age. They wanted to me to know that they thought she had ‘turned her face to the wall’ and had given up. I was told that she had been in bed a week and had not eaten or had anything to drink. The care home was giving me this information to enable my family to prepare for my mum’s ‘last days’.
- SCIE Dementia Gateway: Advanced dementia and end of life care
- Social Care TV videos on end of life care
What preparing means for my family is to manage my mum’s care needs from a distance. This is what we have been doing for the last nine years, since my mum’s diagnosis of vascular dementia.
When I received ‘the call’ it was 2am Australia, where my sisters live, and 11am in Canada, where my brother lives. I felt the weight of responsibility, as there were three people unsure of whether they should drop everything and fly over to the UK as soon as they could.
- End of life care for people with dementia, Dementia Partnerships video
- Working together: Improving end of life care through better integration. What can I do? Practical messages for front line workers (pdf)
As an information professional I take for granted that information needs to be relevant, trusted and timely. In this situation an additional, yet crucial element is that information is communicated in a clear, supportive and sensitive way. These key factors are not always present in end of life conversations, despite increasing awareness of their importance.
Fortunately SCIE has produced particularly useful resources and videos that helped me understand the situation and enabled me to ring the care home with questions that clarified what they meant by ‘last days’. It was also an opportunity for my family to reaffirm our wishes for our mum. On visiting my mum I could see that she had rallied and was not in need of end of life care.
- NHS Choices: Dementia and end of life planning
- The role of social workers in palliative, end of life and bereavement care (pdf)
My mum has recently turned 94 years old. I now feel much more prepared for the next ‘call’, whatever it may bring.