Carers Project
Family carers are essential if people are to be successfully looked after at home in their final months or weeks of life, but their vital contribution has tended to go unrecognised in the past. There has been more publicity concerning the tasks of caring recently with government acknowledgement of carer's responsibilities and needs. There are undoubtedly some situations that cannot be managed in the patient's home, and not all situations can be predicted even in the terminal stage, but carer exhaustion and inadequate support for the carers are common reasons for patients being admitted to hospital or hospice at the end of life.
Although we know that around 50% of patients with cancer state that they wish to be looked after and die at home, less than 25% actually achieve their wish. Sadly, too many people are inappropriately admitted to hospital at the end of their lives and then die away from home. The Department of Health is committed to giving patients choice about their preferred place of care but this will only happen in terminal illness if the family members who are responsible for a great deal of care feel able and supported to provide it.
The St Mary's Carers Project aims to enable people to be more informed and confident about providing care in their own homes and is backed up by our Hospice@Home specialist palliative care nursing team who provide care in homes in collaboration with District nursing teams and Macmillan nurses. The carers' service also helps carers to look after their own health which is essential if they are going to manage the physical and emotional demands of caring.
Experience from public consultation carried out in Barrow by the hospice with regard to the asbestos-related cancer, mesothelioma, identified carers' needs as being around information, practical support and emotional support.
In common with our hospice services generally, our services support carers regardless of the illness that their loved one is suffering from, ie they are not restricted to cancer.
The St Mary's range of services for carers:
An Information desk based at Lesser Kings Hall - aimed at assisting people to find out about various illnesses, different types of support available, self-help groups , and other agencies. Carers need to understand the illness and its effects on the body, what is happening when new symptoms develop or complicated treatments are in progress, in order to be able to plan and also to know when to ask for assistance in a changing situation.
Drop-in support groups with tea and cake and a nurse or therapist to talk to. Sometimes it is important to just be able to unwind or unload problems onto someone who understands your situation - all our staff are familiar with the many extra roles and responsibilities that the carer role includes - many of them unfamiliar and worrying to the carer.
A Carers Course including basic coping skills, managing medicines, relaxation techniques, benefits and thinking ahead.
Group relaxation sessions led by our complementary therapy team. Lack of sleep is a common problem for carers who feel as if they are on 'red alert' all the time and looking after someone with terminal illness at home can be an 'emotional roller coaster'.
A social day care for respite for patients that gives their carers some 'time out'. Many family carers find that the responsibilities usually tend to fall mainly on one person, the husband, wife or adult son or daughter. As a result it can be difficult for the carer to get out of the house because there is no one else to take over. Knowing that the patient can be left in the safe care of hospice staff for a few hours allows the carer to get their hair done or visit a friend or just put their feet up without worrying.
Bereavement support - groups and one-to-one sessions. We have a well-established volunteer team of trained bereavement visitors who visit bereaved people in their homes. We also offer bereavement support groups which have proved very helpful.
For more information about caring for someone who has been diagnosed with a life limiting disease, please take a moment to read 'Caring Counts' a booklet produced by Help the Hospices which can be found in the downloads column.