Family and Carers

Finding out that someone you know – a relative, acquaintance, workmate, or friend - is diagnosed with cancer comes as a shock. Anxiety, sadness and even anger at the news are all quite common reactions.

 

As a family, friend and/or carer, being there for a person diagnosed with cancer involves looking after their needs with physical, emotional, social, cultural and spiritual support. Importantly, it also involves making sure you don't forget to care for the family and friends who are providing the most of that support, such as a spouse or child of the patient.

 

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 a major illness.

 

A patient’s illness can affect the entire family; especially when the illness is progressive and causes changes in the patterns of life for all of the family. Although caring for the patient at home is rewarding, it may also be strenuous, both physically and emotionally. 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 family and caregivers; usually the people the patient knows will continue to love and care for them despite their bad moods. This type of behaviour is usually a reflection of the mixed feelings and emotions that the patient is experiencing due to being diagnosed with cancer. This may stems from:

 

• A sudden loss of independence after being diagnosed;

• A change of role in the family dynamic. For example, if the patient stops becoming the breadwinner of the family, or used to be the one the family relied on to do things such as wash the car or lift heavy things but they are unable to undertake those tasks any more due to the illness.

• Feelings of "why did this happen to me?"

• Anger at the diagnosis;

• Confusion;

• Fear of the future and possibilities.

 

Many caregivers, naturally, feel hurt or angry when this behaviour is directed towards them, particularly when they are feeling emotionally ‘fragile’. On the other hand, if the friend or caregiver has become quiet or withdrawn, this may also be an indication that they are feeling anxious, confused or scared. As friends, family and caregivers, be conscious to keep communication open with eachother.

 

Sometimes the patient is not aware that they are behaving differently. You can share your feelings, fears and frustrations with counsellors or psychologists of the hospital or cancer therapy unit, who are there to help the entire family cope with this difficult experience.

 

Below are some tips to assist you in this difficult time:

 

1. 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.

2. 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.

3. 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.

4. 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.

5. 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.

6. 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.

7. 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 usually becomes involved when one member is ill, sharing this experience makes it easier. Each member of the family is unique and will deal with the news and its progression in his or her own way.

 

It can also 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 counsellor. They can help family members explore any issues, listen and support each other. Below are some suggestions of who can assist:

 

• Social Workers/Counsellors: Social workers are available through most cancer therapy 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.

• Volunteers: Many cancer therapy services have volunteers who are selected and trained to work with people who are diagnosed with cancer. 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.

• Spiritual Care: The journey to find meaning and purpose in life may become a focus for someone diagnosed with cancer and their loved ones. 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.