What the Patient May Be Feeling
You will likely find your loved one experiencing a wide range of emotions that can include sadness, guilt, fear, anxiety, loneliness, grief, withdrawal and disengagement. He or she can be stubborn and resistant, though oftentimes patients do this to maintain a sense of control. Some people welcome death, some fade slowly and some fight death intensely till the very end. We are all individuals, and it's important to remember that your family member will die in his or her own way. There is no "right" way to die, and it's important to remember this as well.
What Family and Caregivers May Be Feeling
Family members, loved ones and caregivers may also be feeling a wide range of emotions such as anger, guilt, anxiety, sadness, lack of focus, meaninglessness, fear and resentment. They may feel a loss of hope, independence or security. It's important to remember that you may have different emotions than other loved ones and that all feelings are acceptable, even negative ones. You should not be harsh or judgmental with yourself. Many caregivers are confused by the withdrawal and disengagement that's sometimes exhibited by dying individuals. It's important to understand this as a part of the dying process.
If you're a friend or an extended family member, you may be at a loss for words or not know what to do. Sometimes, the patient and immediate family can interpret your awkwardness as neglectfulness. The best thing you can do is to take a chance. Offer to help by making specific suggestions. "Can I food shop for you this week?" or "Can I come and read to ____, so that you can get out to the hairdresser?" are possibilities. If met with a refusal, then ask "What, then, can I do for you?" If you're speaking with the patient, let him or her lead the conversation. He or she may want to have a normal conversation or discuss serious matters. Listen for cues.
What Can Help?
- Honest communication is of utmost importance. But remember that communication is a two-way street. Listen to your loved one and other family members but also communicate your own needs.
- Realize that communication is both verbal and nonverbal. You can be saying one thing verbally and conveying something else with your body language and facial expressions.
- Try to remain open. Avoid making statements like, "You shouldn't feel guilty." Instead say, "Help me understand what's making you feel that way." This lets dialogue and communication continue. Phrase your concerns or questions in sentences that promote open conversation.
- Understand that we all have differing needs for information. Studies show that most patients want to know if they're terminal. It's important, however, to take the lead of the patient in this. Look for signs of what they want to discuss and when they want to discuss it. Protecting them by not telling them about their condition can greatly increase a sense of isolation, which will in turn intensify other feelings like depression and loneliness.
- Use touch to communicate. A touch on the cheek or a shoulder is another powerful way to say, "I love you."
Listen to Experience
Hearing what other terminal patients have said during their final days may help you better understand how your loved one is feeling. The following comments from the Hospice Foundation of America are direct quotes from patients:
- "Be honest with me. I can tell when your feelings or actions are insincere."
- "Laugh with me; cry with me. Allow me to express intense emotions."
- "Don't feel sorry for me. Your understanding helps preserve my dignity and pride."
- "Touch me. I want to be accepted despite the way I may look. Inside, I'm still the same person you always knew."
- "Let me talk about my illness if want to. Talking helps me work through my feelings."
- "Let me be silent if I want to. Sometimes I don't have much energy, and I just may want your silent companionship. Your presence alone can be comforting."
- "Space your visits and calls. Consistent support is very helpful to me."
- "Support my family. I may be very sick, but they too are suffering. Let them express their grief."
- "Offer to help me with the simple chores. Routine jobs are often difficult to accomplish."
- "Offer to baby-sit. The children need a break from my illness, and private times with my spouse are treasured."
- "Continue to be my friend. Don't let my illness overshadow all the good times we've shared together. I know this is hard for you, too."
Try to allow your loved one as much autonomy as possible within the constraints of the illness. Let him or her make choices, and treat your loved as you always did. Just because someone is ill, it doesn't mean he or she is no longer your parent or spouse. Help your loved one maintain grooming. Whenever possible, let him or her get dressed and made up. This can enhance self-esteem.
Finally, always maintain hope. Throughout the course of an illness, hope can take many forms. It can be hope for a cure, hope for quality of life, hope for a peaceful death or hope for an existence beyond our mortal lives.