For an elderly parent, using an Advance Care Plan is a way of communicating their wishes about their care, both now and in the future. For an adult child, discussing your parent’s preferences for end of life care can also involve complex negotiations over time with siblings regarding the practicalities of providing this care. Here, Maggie from Norfolk offers Age Space a very personal perspective
‘My mum is 86, frail and living in a residential care home. I have three sisters: the eldest lives in Spain, so can only visit every couple of months, and of my two middle sisters, one lives 10 minutes away from my mum and the other an hour away. I am the youngest and live three hours away.
The travelling distances have determined which one of us is my mum’s main carer. This undermines the normal hierarchy of sibling decision making, where the oldest may take a dominant role regarding decision making. However, in our family’s case, she is the least able to provide practical help – but still wants to be involved. So it became a challenge as my mum has become frailer and many arguments were had – sadly…
This situation has thankfully resolved, because the practicalities of the situation have driven the real life scenario: my sister who lives 10 minutes away is the daughter who takes the brunt of the caring tasks. My other sisters and I have realised that this is the case and that we need to support her as much as we can in this role.
So from my perspective, as the youngest and three hours away, I try to visit monthly – for a whole weekend – and also try to bring my mum to stay with me in Norfolk a couple of times a year, for a week at a time, so my sister who lives the nearest can feel she has a weekend or week off from being on standby for my mum.’
With an increasingly older population in Norfolk (of whom one in four will suffer from some form of dementia) it is important to start conversations about the sort of end of life care someone wants, before they are unable to do so for themselves. This can be written down in an Advance Care Plan and shared with family and care providers, and in Norfolk this documentation is called the Thinking Ahead Yellow Folder.
Maggie’s mum, who lives in London, has signed the declaration, which contains her wishes for her Advanced Care Plan. On the form she will have filled in her details; as well as details on the key person to contact about her care; her current situation and what she would (and would not) like to happen if her situation deteriorates; plus information on the Health and Welfare Lasting Powers of Attorney as well as the Property and Financial Affairs LPA. The Plan can also be filled in on behalf of a patient, and at the bottom of the form there’s space to write down your support network – for example, the main person to call in a crisis. Maggie says of the Advance Care Plan – Thinking Ahead Yellow Folder: ‘It has helped in that we all have a shared understanding of what she wants.’
You can obtain and Advance Care Plan from your GP or district nurse, or download the contents of the local Advance Care Plan by visiting www.greatyarmouthandwaveneyccg.nhs.uk.
An Advance Care Plan improves end of life care, and research has shown patient and family satisfaction to increase, whilst stress, anxiety, and depression in surviving relatives is reduced.
To read Healthwatch Norfolk’s 2016 published report, ‘Thinking Ahead’ – Advanced Care Planning, visit www.healthwatchnorfolk.co.uk