The steps that family members take to cope with all of this, called “tasks”, are part of an ongoing process. Family will likely find that they are engaged in all of these “tasks” to varying degrees at the same time. There is no set procedure or need for completion; different ones will be more important at different times. Looking at each of these “tasks for families of dying patients” separately will help you to understand more exactly the demands of the situation and help family members make the best use of time, energy and resources to deal with them.
Some denial of reality is healthy and necessary for you to function. It allows you to take in information at a more tolerable pace, and gives you a break from the emotional stress of a situation. Acceptance of what is happening will not necessarily bring peace.
You may need to learn how to be constructively assertive as well as find a way to deal with frustration. Family and caregiver conferences can help to reduce your anxiety by opening communication lines and giving you direct information. It may help to write your concerns down before meeting with your health care providers.
As the illness progresses the patient’s physical and emotional needs will change. Your task will be to help in the best way you can without taking away control or independence. Remember to ask the patient about his needs rather than assume that you know.
When someone is sick it means that everyone has to take on new roles and responsibilities. At the same time it is really important to maintain some of the normal family routines. This helps to give everyone some security in the midst of chaos.
During this time both patient and family may experience intense swings in emotion. Having information about these feelings and being aware of reactions will help everyone begin to cope. It is important for family to let each other know how they are feeling and what they need. There may also be things that people prefer to discuss with someone outside the family unit.
There may be little energy for outside relationships and commitments at this time. Often, other people’s reactions may be unpredictable and difficult. Some friends or helpers may be too involved or too cheerful; others may avoid talking about the illness or even visiting the person who is ill. Many people don’t understand what family members are going through and it is hard not to resent others’ stability and good fortune.
It is impossible to imagine the future. However, estate planning, dealing with different kinds of unfinished business and building in supports are things that can help family members to prepare. The important is to do the best you can.
What everyone hopes for throughout this time will change. Long term plans need to be replaced by short term plans; treatment aimed at cure may be given up for that which relieves symptoms. Accepting the goal of comfort rather than of cure is a step toward acceptance of the inevitability of death.
Refusal to take medications or accept personal help may be very difficult to deal with, but it is important to recognize the patient’s right to choose activities that may put him at risk. However, these choices should not put family members at risk.
There may come a time when the patient is unable to make decisions for himself. Prior discussions, and Advance Directive, or Living Will and knowledge about the person will help you respect and represent his best interests.
When caring for someone else, it is hard to have energy for oneself and to see this as important. Building in time for self-care is crucial, e.g. sleep, nutrition, exercise, relaxation. Recognize that all members of the family have needs … physically, emotionally and spiritually. Also, family strength and good health makes it possible for them to support and care for the person who is ill.