Written by Kath Murray
People who are involved in palliative care often say,
“Caring for the dying person is easy. It is caring for the family that is difficult.”
Of course, it is easier or simpler to care for an unresponsive person than to care for a group of people who have come together to be with, care for, and make decisions for a family member who is dying.
Just imagine all that is happening for this group of people! Imagine each person and what that person might be experiencing. Imagine what the whole person experience of grief might be like for each person involved—the emotions, the struggle to think, the stress and pains in their body, the spiritual angst, the difficulty relating to other people. All these things are normal.
Now think of these people who have come together as a group, perhaps as a family, with who knows what history of relationships, styles, personalities, struggles, wounds, communication blocks—imagine that they are together, perhaps for the first time in years, perhaps because they are drawn to close what have been difficult relationships, perhaps dancing a dance that they have danced for decades. Imagine that they are having to walk side by side with someone whose style does not mesh with theirs and whose presence irritates or reminds them of hard days gone by. Just imagine!
You say that caring for the dying person is easier. Of course it is!
Let me share a few secrets with you.
Caring for, or companioning, a loved one through to death can be a sacred and special experience, but it can also be a difficult and challenging one.
Some family caregivers choose to take on that role, and others may feel that they had no choice and feel resentment for having to do so. Some people respond to the dying of a loved one by wanting to help, while others may find it too uncomfortable or frightening to be involved at all.
It is normal for old, unresolved issues and feelings to bubble up to the surface when someone is dying, making family dynamics complex and sometimes even hard to watch. At other times, family members may actually be brought closer to one another by an impending death and the need to work together to make decisions and carry out a loved one’s wishes.
The point is that people respond to a family member dying in all kinds of different ways, and this is normal and to be expected. It is also true that the ways in which people respond when a loved one is dying are strongly related to their history as a family, including the nature of their relationships with each other, and the physical and emotional distance that separates them, as well as their existing obligations to work and so on.
Family members need your understanding, your compassion, and your warmth.
They do not need you to take sides, judge, or share your personal opinions.
They need you to empathize, support, acknowledge, inform, and encourage. I repeat: Be kind!
You would do well to remember the following:
– The dying person and the family are the unit of care. While you work to create a safe place for the person to die, try to create a safe place for the family too.
– Stress and grief may be a family’s constant companions. Understand and accept the wide range of emotional responses that various family members experience.
– Respond to questions and concerns, even if it is simply to reply, “That is a good question. Can I connect you with the nurse who can discuss that in further detail?”
– Accurate information given in a timely way allows family members to anticipate changes, validate what they see, and participate in caregiving. It can also reduce fears and prevent unnecessary crises.
– Receiving conflicting messages from various members of the team is difficult for the person and the family. If a family is struggling with conflicting messages, talk with the nurse. When you share information with the family, make sure it is accurate and consistent with information the team provides and with the care plan.
And lastly, remember to take care of you, so that you can provide care for the dying person and family.
An excerpt from Integrating a Palliative Approach: Essentials for Personal Support Workers
For more information like this, explore the resources for nurses and front line caregivers