Terminal illness has a significant impact on family members and carers who surround the person with the diagnosis. They walk beside that person observing their experience of illness and associated losses, at the same time facing their own challenges, confronting their own issues and concerns. The stress experienced in facing a future without someone we love can be overwhelming.
When someone arrives at hospice, in addition to their experience of their illness and treatment, how they are feeling at the time, their experience of life, relationships, their expectations, goals, beliefs, values, and importantly, those of their family and carers will influence the plan for their care.
The goal is to improve quality of life for our guest, their families and carers by providing care that addresses physical needs, including treatment of pain and other symptoms, emotional, social, cultural and spiritual needs.
Further information is available by clicking on these links: Australian Institute of Health and Welfare provides an overview of palliative care.
MedlinePlus, U.S. National Library of Medicine palliative care and hospice car.
Some people and their families/carers will have had shared experiences of progressive disease. Perhaps shared concern about symptoms, anxiety over tests, sleepless nights waiting for results. The diagnosis might come as a shock, might bring life changing implications. This acute phase might mean treatment that is in itself stressful, invasive, intrusive into life as it was known, disrupting work, lifestyle, be expensive. Where recovery is not the outcome of treatment and the condition becomes chronic, uncertainties and stress may last months, possibly years. Once a disease becomes terminal when there is no cure and death the outcome, the meaning of life may well change beyond all expectation.
Caring for someone can be challenging, emotionally and physically. Many carers see themselves as a family member who looks after someone they love, rather than as a carer. Caregivers are often faced with multiple concurrent stressful events and extended, unrelenting stress. The nature of stress is likely to change as a disease progresses and carers can feel inadequate to meet demands. Carers WA website offering information on rights and resources available to carers in West Australia
In addition to the emotional strain, physical demands, constant uncertainty for family/carers, other major concerns identified by research include:
The shared journey through profound losses, illness and grief can affect our beliefs, values, quality of life and the meaning of life itself. Assessing the level and nature of stress is an important part of caring in palliative and hospice care and support can make a difference.
The kind of support offered will depend on individual needs. The responsibility for family and carer support is one shared by the Hospice Team and often provided by or through the Family and Carer Support Coordinator. Support begins when a guest arrives in hospice for care and ends once the family member/carer no longer needs support, has adjusted to a life after someone has died, or is receiving support from an alternative source.
There is no time limit on grief. Grief is a process, not an event. It is as unique as the individual and will depend on personality, previous experiences, physical and mental health, other stresses, culture and, most importantly, on the relationship with the person who has died.
Important elements to grieving include:
Support can assist with these elements.
Support is not always needed by family members or carers before someone has died. Some families/carers are well prepared, accepting of the situation, comfortable with the care, knowing that wishes are respected. They may be a close family and used to supporting each other, may have a strong faith, and may not need further information or additional support. Their reaction to the dying experience and death is likely to be a normal, manageable grief reaction.
Support is available, however. Listening to people’s concerns, resourcing people through information, facilitating decision making, identifying strategies that make the journey through grief and loss more manageable. For many this journey begins with a diagnosis and is peppered with multiple losses such as physical impairment, loss of independence, loss of the ability to work, financial insecurity, loss of self- worth. We cope with adversity in different ways. Although there is not a right or wrong way of grieving, some coping choices can be less helpful than others, can contribute to behaviour that can lead to family rifts, quarrels that add another layer of complexity and detract from a meaningful, positive experience of dying.
Support can assist in choosing healthy, helpful strategies that maintain well-being, can assist some people to say goodbye in ways that are mutually meaningful, that promote a sense of emotional healing and completion that can add a positive dimension to the dying experience.
The consistent focus of the hospice team is on providing best care for our guests in terms of symptom relief, comfort, dignity, respect and on the needs of family/ carer, whether it is information, practical assistance or emotional support.
Consistent with the hospice team’s plan of care, support is tailored to the needs of the individual. Grief and bereavement may have some shared core elements but there is no one way that people grieve. Grief is experienced differently, can involve different emotions, cause different actions, be expressed differently.
Support usually involves time set aside to be with the person who is bereaved, listening, sharing memories, answering questions, finding appropriate resources that do so, referring to alternative sources of assistance. Generally walking alongside the person who is grieving, who is mourning a loss of presence. Supporting them in ways that are helpful and meaningful to them over time, as they seek to adapt to their circumstances.
Federal government support following a death
What happens first, insurance policies, funeral plans and wills, who to notify, removing someone's name from mailing lists, social media accounts, assistance from us, financial matters, support for you after someone has died, other government and community support services, payments and services. State Government information local information cemetery board, Albany
10am - 2pm at the Hospice
5pm - 12pm King River Tavern