Advanced Home Care 

It is a privilege for the staff and volunteers of the centre to be able to provide this special service. The service is adjusted daily to meet the needs of the people being cared for and their families. We endeavour to provide the service with respect, dignity and good care to the best of our ability. Aids are also provided to assist in the home as needed. If you have any concerns or would like any further information, please contact us. You may wish to download this information as as a pdf and share with your family.

How can you help when a friend has a terminal illness?

Personal Contact

After someone is diagnosed as terminally ill, people, whether consciously or unconsciously, begin to treat them differently. Our personal fears of death or lack of appropriate words, leads us to avoid contact with those who are suffering. We can communicate something positively by talking with the ill person, visiting them or extending an invitation to do something socially. It is important that they are included as much as possible with friends and their activities. The personal contact does not need to come from everyone; in fact, the person may welcome the contact most when it comes from familiar friends. This is especially true as the disease intensifies. If you wish to visit someone in hospital or at home, you need to check with a family member first. Be aware that a terminally ill patient will have both “good” days and “bad” days for visits and calls, so respect the family’s wishes and judgment. While it is important that visits be planned ahead, do not automatically assume that others are visiting.

Be a good listener

As you listen, be sensitive to the progression of emotions which come with a terminal illness: shock, denial, anger and bitterness, bargaining, depression and acceptance. Each person in the family must work through this process at their own rate, because not everyone will be at the same stage of preparation. This often results in misunderstanding and lack of communication between family members. Certain emotional steps may be skipped or be brief for one person, and much longer for another. Well chosen words can help greatly while poorly chosen words can seem empty or callous. If you are in difficulty here, a social worker, counsellor, minister, priest or nurse might assist you.

Help to meet practical family needs

This could be help around the garden, wood supply, cooking, mending, ironing or collecting a package from the chemist. Remember the Bush Nursing Centre can assist with home nursing, including personal alarm pendant systems, home care, property maintenance, meals on wheels/food services, respite care in the home for other family members, social workers, occupational therapy and referral to other health workers.

Nursing a terminally ill person at home

The last few days of a person’s life are very different and may be viewed with apprehension by all concerned, if you are not prepared. The Bush Nursing Centre is available to provide support, help and understanding during this time. If you have never seen anyone die you may be afraid of what will happen, but the moment of death is rarely one of struggle.

Possible signs and symptoms

• The patient will gradually spend more me sleeping during the day, and at times will be difficult to rouse. Increasing sleep is a result of a change in the body’s metabolism.

• There will be a decreased need for food and drink because the body will naturally begin to conserve energy.

• The patient may become increasingly confused about the time, where they are and the identify of family and friends who are normally familiar to them.

• As a result of blood circulation slowing down, the arms and legs may become cool to the touch, and the underside of the body may become darker in colour.

• Loss of control (incontinence) of urine and/or bowel movements may occur when the patient is very close to death.

• Urine output may decrease as death comes closer.

• Saliva and mucus may increase and collect at the back of the throat, as the patient's cough or swallowing reflex diminishes. This sometimes causes noise known as the “death rattle”, which is unpleasant for the carer, but is usually not distressing for the patient.

• Vision may decrease slightly. hearing may also decrease.

• Breathing patterns may become irregular, with 10 seconds to several minutes where no breathing occurs. This indicates a decrease in blood circulation and a buildup in body waste products.

What to do about these symptoms

• The best time to communicate with the patient is when they seem most alert.

• This is a natural process, and attempting to feed a patient who is unable to swallow at this me may cause distress. Moist swabs or tiny amounts of crushed ice will help to relieve feelings of thirst.

• Talk calmly and confidently with the confused person to reassure them, and to prevent startling or frightening them. Identify yourself by name, this may lessen the confusion. The use of a night light may also help.

• If the patient feels cold, use one or two blankets to keep them comfortable. Avoid too many bed clothes or electric blankets, as this may lead to overheating and increase restlessness.

• Use incontinence pads and sheets to protect the patient and bedding and to maintain comfort and cleanliness.

• If the urine output decreases, the patient may need to be assessed by your doctor or nurse for retention of urine, which may require draining.

• Elevating the head of the bed with pillows and turning the patient from side to side may relieve breathing problems.

• When vision decreases, provide a light in the room, particularly at night. Never assume that the patent can’t hear you, as hearing is the last sense to be lost, and letting them know you are there, will give them support and comfort. If desired, your religious leader can be informed that death is approaching. Unless the person you are caring for is religious, however, the appearance of a religious leader without their knowledge or approval can cause distress. Your doctor or nurse will be able to discuss these suggestions with you, please do not hesitate to ask them for further advice.

How will you know that death has occurred?

• No breathing

• No heartbeat

• Loss of control of bowel or bladder sometimes occurs

• No response to touching or talking

• Eyelids may be slightly open and pupils bigger than usual

• Eyes fixed in one spot

• Jaw relaxed and slightly open.

What should you do when death has occurred?

• You do not have to contact someone immediately unless you feel you need to. If you are usually alone with a patient, plan to have a close friend or relative available at short notice to be with you at this me.

• Do not contact the police, or call for an ambulance. The body may remain at home for several hours if you would like other close friends or relatives to be able to say goodbye.

• Contact the Bush Nurse to help you confirm that death has occurred. The nurse will then inform the doctor. It may be helpful to you and your family to ask a religious leader to call before the body is removed.

• Contact your funeral director when you would like the body to be attended to and to discuss funeral arrangements. Please ask your doctor or nurse for further information.
  

  Adapted from information supplied by Marg Venning, Clinical Nurse Consultant Western Hospice Palliative Care Service, The Queen Elizabeth Hospital ,South Australia.