The hardest thing we have ever done - Palliative Care Australia

This financial pressure may mean that carers are not able to meet their own needs if they
are not able to afford to participate in social activities or go without clothing, toiletries and
other necessities of daily life.
Feedback from carers highlights that they are experiencing an increase in adverse health
effects related to stress such as shingles, CVD and other stress related disorders. Eating
patterns often change and weight loss is not uncommon. There is often a change in sleeping
patterns and reduced sleep for the carer leading to fatigue. Carers have reduced opportunity
for social activities (including access to sport and recreation activities) thus further reducing
their own physical wellbeing. Carers ignore or diminish the importance of their own needs
and forego own health checks.
Carers become quite socially isolated and often home bound, as home becomes workplace
instead of sanctuary. The lack of respite care may also prevent a carer being able to attend
carer support groups or social functions, which might provide an outlet to the daily stress
and demands of their caring role. Therefore, lack of respite care can lead to social isolation,
exhaustion, illness and negative feelings towards the dying patient and carers putting their
own health at risk. Carers may also experience feelings such as guilt, fear, frustration, anger,
resentment, anxiety, depression, loss of control and sense of inadequacy. Periods of caring
may be brief or quite long and protracted, with a roller coaster of emotions, reactions and
frequent crises. They experience losses such as intimacy, freedom, identity, dreams, visions,
choices, lifestyle and status.
Gaps in Services and Recommendations By Service Providers
The recurrent themes emerging from the submissions by support organisations and other
service providers, on needs of carers and gaps in services, can be grouped into four
categories, quite interrelated at times: Information and education, financial and employment
difficulties, respite and other support services and recognition. These categories of
recommendations mirror those suggested by carers in the previous section of the report.
Information and education
Service providers suggest that the following is required for carers:
• information and education about the patient’s condition and its implications and
recognising and reporting changes in health/functional status
• training in specialised medical and treatment management skills to enable them to
provide the appropriate level of care in the following areas:
1. symptom management such as administering medication both oral and
subcutaneously – part of this role also requires the carer to determine which drugs to
use for different pain components eg Buscopan or morphine
2. management of urinary catheters and stomas
3. management of nutrition and hydration
4. hygiene care – this is an area where carers are often stretched because patients are
often reluctant to have help from outside agencies.
• information about available services and how to access them in order to stay emotionally
and physically healthy and provide appropriate care for the terminally ill person,
including information on how to access individual and family counseling services as well
as how to access physical support, such as appropriate respite care for themselves and
their care recipient
THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004
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