Learning The Diagnosis
The diagnosis or a life-threatening illness such as cancer, dementia, motor neurone or other neurological diseases, cardiac or respiratory disease, or kidney failure, is a devastating event for all involved. It can bring with it a range of intense emotions and reactions, which may include sadness, anger, guilt, anxiety, loneliness, helplessness, shock and numbness.
It is common to hear people say that they cannot believe this is happening. As the reality of the illness sinks in, however, it is not unusual, even in the early stages of the illness, for the sick person and family to begin grieving over the person’s loss of health and possible death.
For some people, however, it may even be a relief to finally have a diagnosis after a period of ill health and uncertainty.
Living With Illness
During the course of the illness, many changes and losses can be experienced by the patient and the family, and a process of grieving may accompany these losses.
Such changes may include:
- a sense of uncertainty about the future
- disruptions to normal household routines and life style, for example: time spent in attending appointments and undergoing treatments
- adjustments such as giving up work to take on a caring role
- increased stress and demands in caring for the sick person
- reduced contact with friends
- increased, potentially intrusive, contact with those who provide medical and nursing care
- limited opportunities to talk about the illness and its impact due to social “taboos” about topics such as cancer, dying and death
- the physical deterioration and gradual loss of functioning experienced by the sick person
As the illness progresses, many emotional ups and downs can be experienced, with those involved fluctuating between times of hope and times of despair. This emotional roller coaster can leave patients and carers uncertain about how to deal with the patient’s possible death. However, many people will experience what has been called “anticipatory grief”, in which they acknowledge, albeit unwillingly, the possibility of death and begin to grieve and prepare for life after the death.
Finding Help And Support During The Illness
During the illness, those involved may find it helpful to:
- get answers from health care professionals involved to any questions or anxieties that arise
- make contact with support groups run by many illness-related organisations
- talk to someone who has been through a similar experience
- keep in contact with close friends or relatives who will understand their feelings and give support
- try to keep communication open and honest as the illness progresses
As the likelihood of death becomes more evident, the dying person and their family can go through a very stressful, intense and complex process of coping and grieving.
The support of close friends and family can help immensely during this time.
Palliative care is care that helps people live their life as fully and as comfortable as possible when living with a life-limiting or terminal illness. Palliative care identifies and treats symptoms which may be physical, emotional, spiritual or social. Palliative care may be relevant at various times during a terminal illness, and receiving palliative care does not mean that all other treatments need to be stopped.
In most areas, palliative care is co-ordinated or supported by a Specialist Palliative Care team, but the care will often be delivered by a GP and community nurses at home. Palliative care can also be given in a hospice or hospital.
The support of a counsellor, social worker or pastoral care worker, either from the palliative care team or the community, can also help to talk things through and prepare for death.
For some, the whole community may come together to provide this support.
When a person dies after a long-term illness, there may be some specific factors or issues related to the grief of those bereaved:
- although the death could have been foreseen, the reality of the loss can be unexpectedly profound
- physical exhaustion, for those who have provided care, or even stayed with a loved one in hospital, may be overwhelming initially
- when the death occurs after a period of prolonged and intense medical care and treatment, the death may cut the family off from this previous contact and support, and leave them feeling isolated and disconnected from those they relied upon
- many medical services which treat long term, life-threatening illnesses also have bereavement support available or can assist families in receiving such help
- the long, deteriorating course of the illness may lead to some additional difficulties for those bereaved in this way:
- they may be bothered by memories of the physical changes and deterioration suffered by the person who died
- they may have ongoing feelings and reactions about the nature and quality of care provided during the illness, perhaps wondering if treatments might have been done differently or better
- bereaved family members may be able to deal with any such lingering questions by talking to their family physician or to the specialist(s) involved in the treatment of their family member
Adjusting To The Loss
While a death after a long term illness may bring relief from the demands and worries associated with the illness, it will leave a significant hole in the lives of the survivors, who often have dedicated much time and energy to caring for their dying family member. It may take some time to adjust to this loss of the caring role.
People who have cared for someone through an illness have often developed considerable knowledge and skill in dealing with that illness, and it may help in their grieving to volunteer for the relevant illness-related association or to be a support person to another family dealing with the illness. Many volunteers in hospice and palliative care programs have themselves had a family member die, and use their experience as a basis for helping other families.