For family and friends, caring for someone living with a terminal illness who is approaching the end of their life can be one of the most challenging and difficult times. Yet they often do not get the help they need.
Sadly this can lead to their health deteriorating, they might have to give up their work, may lose contact with friends and family, and can experience a sense of failure and isolation. These experiences can impact severely on their grief for years after the person they have cared for dies.
When asked, the vast majority of people with terminal illness would like to be cared for and die at home, if they can. Research shows that having a person who lives with them, and can provide that care is the biggest factor in making it possible. Supporting carers will be crucial if the Scottish Government is to achieve its vision of enabling people to get more of their care at home rather than in hospitals.
From April this year, everyone caring for someone in Scotland will be entitled to have a plan developed to support them and their needs as carers. Getting this right for someone caring for a friend or family member with a terminal illness will be absolutely crucial if we are to give people the support they need to provide the care they want.
There are a whole range of reasons why a person caring for someone does not get the support they need and often there is not an easy fix.
One of the biggest challenges is identifying carers. Often, moving into a caring role is a gradual process, where people see their role as wife, husband, child or friend grow into being carers as well. Many see themselves only in this way, and would not describe themselves as a ‘carer’. Everything is focused on the person they are caring for, meaning they do not know what they need and if they did, are reluctant to ask for it. Similarly, carers’ needs are often overlooked by a range of people who could be giving them help, including doctors, district nurses, social workers, social care teams and others.
Sometimes the person caring for someone, and even the person being cared for, can be reluctant to accept help from outside. Some perceive needing help to be an admission of weakness and failing, and so they struggle on.
Being a carer of someone with a terminal illness is all-encompassing, especially as the person’s condition deteriorates, sometimes rapidly. It may require the carer to administer medication, manage equipment, run the household and all the other aspects of care. The overwhelming nature of providing care in this way can leave the carer feeling they do not have time for themselves and cannot make any. When someone is terminally ill, the carer can be reluctant to leave them, which can lead to them being less likely to seek help.
There can be many things that a carer of someone with a terminal illness can need to support them to care. It can range from a break from caring, information and advice, training, peer-to-peer support, a plan for when things might go wrong or if there is an emergency.
If carers do not get the support they need, then there is a very real risk that they will not be able to continue to provide the care they do. They are at risk of falling ill and being admitted to hospital. Exhaustion, depression and a range of other issues can have an impact on the carers’ ability to care.
All this can lead to the care situation reaching crisis, so it is vital we get care and support right for carers too. Being able to plan or provide support will not be possible if we do not know who these carers are or make more of an effort to identify them. When the new plans for carers are implemented, greater effort is required to identify carers to ensure that they get the support they need. Through doing this we can truly shift the balance of care from hospital to home.
Richard Meade is Marie Curie’s head of policy and public affairs Scotland, www.mariecurie.org.uk/change