Information for Families and Carers

This page contains information and links that might be useful to carers and families.

Helpful Reading

Care for the Caregiver(s)
Bethlehem Health Care Melbourne

Many people faced with a terminal illness prefer to stay in their own home surrounded by those with whom they share a special relationship; but, nursing and supporting an ill relative or friend can be difficult and demanding and may seem a daunting task, especially if the caregiver(s) have no prior experience with chronic illness and the dying process.

A patient’s illness can affect the entire family; especially when the illness is relentlessly progressive and causes changes in the patterns of life for all the family. Although caring for the patient at home is rewarding, it may also be strenuous; physically and emotionally draining.

It is important that you, the caregiver, take care of yourself to keep physically and emotionally able to help the patient.

During the illness, the patient at times may be angry or act strangely towards the caregivers; those people the patient knows will continue to love and care for them despite their bad moods. Such behaviour is usually a reflection of the mixed feelings and emotions that the patient is experiencing, the loss of independence, change of role and feelings of “why did this happen to me?” Many caregivers, naturally, feel hurt or angry when this behaviour is directed towards them, particularly when they are feeling emotionally ‘fragile’. If the patient is not directly angry or hostile, try to discuss your feelings with him or her.

Sometimes the patient is not aware s/he is behaving differently. You can share your feelings, fears and frustrations with members of the palliative care team who are there to help the entire family cope with this difficult experience.

  • Plan time for yourself to get out of the house. Other family members or friends may be able to help, or a volunteer can be organised through the palliative care program. Having ‘time out’ allows things to be put into perspective, as 24-hour caring can be overwhelming at times.
  • Try to get at least six hours sleep each night, and have a rest during the day when the patient is sleeping. If they do not sleep for long periods overnight, perhaps family or friends could assist with a roster system to enable you to get adequate sleep. Community services may be appropriate; this can be discussed with your palliative care nurse.
  • Setting priorities helps. Time spent on regular responsibilities, such as housework and shopping could be lessened, or perhaps given over to other family members, or a volunteer from the palliative care team.
  • Proper nutrition helps to maximise energy. Although the patient may not be eating it is important that you continue to eat regular and nutritious meals.
  • Share your feelings with family, friends or someone outside the family, such as the palliative care team. It is normal for you to have a mixed range of emotions and feelings at this time, and to feel concerned about continuing to cope. Talking this over often helps to clarify feelings and identify problems and to ‘share your load’. Resolutions can be planned together.
  • Relaxation techniques and/or medication may be useful in helping you to relieve tension and allow you to continue your role as caregiver in a calm and relaxed manner.
  • Respite care allows you to have a rest and time to yourself and can be very helpful in renewing you physically and mentally to continue caring for the patient at home. Many patients feel positive about a short-term stay in a hospital or palliative care inpatient facility (formerly called a hospice) during which they can be reassessed and reviewed by the medical staff.

Because the entire family has usually become involved when one member is ill, sharing this experience makes it easier. Each member of the family is unique and will deal with the patient in his or her own way, contributing as they can. Not all families can be open and share their feelings. It can be helpful for family members to talk with someone outside the family with whom they feel comfortable, such as the nurse, doctors, social worker, pastoral care worker or a counselor. They can help family members explore any issues, listen and support each other.

Children, as part of the family, need to be involved and can be encouraged to spend time with the patient and help with the daily care. Sharing the experience helps to lessen their fears and assist them through the grieving process. Death may have different meanings to children, depending on their stage of development and past experiences. Answer questions honestly and in a way they can understand.

Spiritual Care

The journey to find meaning and purpose in life may be described as our spiritual dimension. For some people, faith and their religion is a source of strength and comfort during this time. For others, the spiritual dimension may involve a less formal search for peace and comfort. Individuals have differing beliefs and needs. These are respected by those who are caring for them. The church community, minister or pastoral care worker from the palliative care team can visit to support the family.

Volunteers

Many palliative care services have volunteers who are selected and trained to work with people who are dying and their families. They can provide additional support by staying with the patient so the caregiver(s) can get out of the house and have a break, or by assisting with chores such as shopping. They can also be there to provide companionship and an open ear to listen to your fears and frustrations. an outsider may also bring comfort and friendship to the patient who may choose to ‘unload’ to a person who is not as close as family members. Read more about volunteers here.

Social Workers

Social workers are available through most palliative care services to provide advice and support concerning financial matters, identifying community resources available and to liaise where appropriate for the patient or family. They can also provide counseling to deal with the many changes that occur, and the issues that arise, in the family as a result of an illness.

Friends

Some of your friends, as well as friends of the patient, will want to provide support and assistance. Others may find this time more difficult, feel awkward and disappear out of your lives during this time.

When friends offer help, accept it and give them direction as to how they can be most useful, such as doing the shopping or preparing a meal. Spending time with the patient, sharing past experiences and common fond memories can be enjoyable for all.

Although friends want to continue to visit, this can be tiring for you as a host, and for the patient. Making visiting times, limiting the number of visitors and leaving some space for the family will help alleviate this.

Shared Experiences

Download the Palliative Care Association’s publication ‘A Journey Lived’. Click to download the PDF of A Journey Lived.