"I am doing OK today, and I'm not worried about what will happen after I die, but I don't know what the path looks like between today and then."
- Ruth, a hospice patient
Just as in everyday living, the journey taken at the end of life is physical, emotional, social and spiritual in nature. While each person's journey is unique, we all share in some common experiences. As with Ruth, the unknown nature of her journey was the source of her questions and concerns.
Perhaps one of the most difficult things that families can do is to take the journey at the end of life with their loved one.
This journey can also be one of the most rewarding and loving things a family does.
While this web page addresses some aspects of the journey at the end of life, each person's experience is different.
What are some of the physical changes experienced?
The journey at the end of life brings with it some predictable physical changes:
Eating: As time progresses, most people require less food. Considerable energy may be spent by the family trying to persuade the terminally ill person to eat. They are simply not hungry. Instead, offering small amounts of favorite foods frequently throughout the day can provide the person with some nutrition while avoiding major conflicts over regular meal times. It is important to remember that a declining appetite is normal.
Walking: Just as a young child learns to walk in stages, a person at the end of life may slowly lose the ability to walk. Initially, a walker or cane may be used, then help from a family member, then finally the person is unable to walk, needing a wheelchair. After a period of time, the simple task of getting into a wheelchair may become a major chore. Again, these changes are normal and can be planned for.
Self-care: Being independent and caring for ourselves is important to everyone. As time progresses, the ability to do self-care declines. People may initially need some assistance with getting in and out of the shower. As time progresses, a person will be unable to get out of bed, and will require a bed bath. Families can be taught to do this, and some assistance is usually available through home care services.
There are other physical changes that occur. Specific changes should be discussed with the doctor or nurse involved in the care.
View more info about the last stages of life.
What emotional and social issues might be faced?
A family caring for a loved one facing the end of their life faces many emotional and social issues. Some of the issues they may experience are changes in their roles, grief over the impending loss, and social isolation. It is important to realize that their experiences are normal and shared by most everyone who undertakes this journey.
Role Changes: We are each used to being fairly independent and make our own decisions. Within our families we play certain roles -- someone usually cooks, or takes out the garbage, or performs a multitude of other tasks to help with the smooth functioning of a home and family. When faced with the end of life, the dying person finds himself or herself less able to do their usual tasks. It falls upon the other members of the family to "do what dad used to do."
Grief: As a person approaches the end of their life, families often begin to anticipate the grief that they will feel when the death occurs. This anticipatory grief is a normal response to the impending loss.
Social Isolation: Families commonly experience a growing isolation from their friends and the social groups they belong to. While friends have the best intentions to stay connected, people feel uncomfortable and uncertain about knowing the right thing to say. Unfortunately, the easiest thing to do is stay away. Terminally ill persons and their families also have less energy to entertain guests or to go out.
How does the spiritual journey change?
The last months of a person's life may be a time of intense spiritual reflection. Individuals often choose to take time and think about their life.
Life Review: People may take time to consider the meaning of their life. They may reflect back and look for where they made a difference in their life, in the lives of others, or even in the world. Often this is done with telling stories or reminiscing over the old times.
Bring Relationships to a Close: Many individuals take time to say their goodbyes to their friends and families. Evaluating their relationships and saying the things that need to be said can be difficult but rewarding.