Over the weeks and months following the grim diagnosis of terminal illness or a debilitating injury, your loved one experiences many losses. Once a healthy, functional, productive individual they begin to suffer a severe loss of identity. The valued role they played is soon a thing of the past. How do you, as family, or primary caregiver, deal with this role-reversal? What does your loved one need from you?
“I can do my buttons, for heaven’s sake.” Your loved one suffers a marked loss of energy which brings on more dependence. Even if they are unable to care for themselves, don’t turn into a mother-hen and cluck all around them. Encourage them to do simple tasks which are still easy for them to handle. It honors their sense of dignity.
“Can you please listen to me?” People respond differently to pain and discomfort. Some become chronic complainers; others are more stoic. Be patient with their need to express, vent, rage. It is not about you; it is simply their outlet in the face of a complete absence of control. Fear is a big issue that stalks them. Encourage conversations to help them speak about their fears. In many cases, fear of death is the biggie. Instead of turning away from it, ask questions and address concerns. If you’re squeamish about it, rope in a trusted friend or family member who can have these dialogues. There are books that help you address these issues and ask the questions. Make use of all available resources.
“I’d like to talk to…” Limited energy also means they may no longer be available to family members and friends in the way they used to be. Respect the new reality and work around their schedule, whether it is naps or mealtimes. Sometimes, they will ask for specific people they feel comfortable conversing with. Encourage this. Don’t feel threatened that their affections are being diverted. Imminent death can be frightening. Your loved one may not be able to discuss issues surrounding “Life After Me…” with you because they’re witness to your personal pain of impending loss.
“What did my life count for?” For many people, it is when their time on earth is finite that they wake up to questions of meaning and purpose. Those who are close to the end may wonder what their life meant as they look back on it with new eyes. Some may request a chaplain vist. Some may want to go to church or receive Holy Communion. Others may try to make peace with people toward whom they have harbored ill feelings. As caregiver, you may receive requests for inspirational music, books, or audio CD’s. If the person shows a desire to debate the meaning and value of life, be the patient listener they seek. Allow them a sense of closure, whatever form it may take.
Caring for a dying friend or family member and helping them transition is a precious gift, the value of which will glow in your heart for years to come.