Caregiving at the End of Life

Caregiving at the end of life is more than the practical tasks of helping a person with cancer. It’s also about promoting a feeling of peaceful acceptance. This fact sheet will cover the following:

• Practical ways to increase comfort
• Your own mental and physical health
• Your loved one’s emotional wellbeing
• The topic of death and dying

What Are Some Practical Things to Consider as a Caregiver

As a caregiver, you will need to work with the health care team and any others to make sure that all of your loved one’s needs are met. Here is some advice:

Create a peaceful atmosphere. Keep your loved one warm, clean and comfortable. Play soft music, as hearing is thought to be the last sense to remain.

Understand silences. Your loved one’s voice may weaken as their strength goes. They may talk less and avoid long conversations. This is normal as the end of life nears.

Expect a changed appetite. Your loved one may decline food or be unable to eat or drink. Talk with the healthcare team about the best way to respond to changes in your loved one’s appetite.

Be aware of medications. Some medications cause a person to be less alert in order to control discomfort. Make sure which one your loved one values more, being alert or having less pain.

Ensure all documents are prepared. If estate planning has not yet been completed, find an estate attorney who will help you and your loved one with this process.

Inform necessary friends and family. Inform necessary friends or family members about your loved one’s condition in case they need to make last minute travel arrangements.

What Are Ways for You to Take Care of Yourself While Caregiving?

Caring for someone when they are dying takes strength. Be sure to look after your own needs. This includes making time to eat, sleep, and take care of your own health needs. A hospice nurse or home health aide can help with the practical parts of care. Alternate respite care from family and friends can help with everyday chores, such as fixing meals or taking care of pets.

Caregivers need counseling, too. CancerCare can help find the resources you need. To learn more, visit www.cancercare.org or call 800-813-HOPE (4673).

What Are Ways to Help With My Loved One’s Emotional Needs?

Your loved one may let you know how much they want to discuss their illness. For example, comments such as “I don’t seem to be getting better” or “The treatment doesn’t seem to be working” can be openings to discuss end-of-life concerns. These are some of the things you may consider:

• Ask if they would like to speak to a professional, such as a social worker or spiritual leader, for emotional support or spiritual guidance.
• Ask if they would like to proceed with, cease, or change their treatment.
• Learn how they want to live the remainder of their life and how they would like to be cared for.
• Listen and let them know that you hear what they are saying.
• Be honest about how you are feeling too.
• Encourage them to think about the highlights of their life.

Be a good listener. Your loved one may speak of sadness and fear of pain or death. Your presence and courage to listen will help your loved one’s anxiety and fear.

Don’t forget humor. If your loved one has always enjoyed humor, don’t think that you need to only be somber or solemn around them now.

Follow their wishes. Even if you disagree with the wishes your loved one expresses, respect their right to decide while facilitating clear, honest communication about your thoughts and feelings.

Should I Speak to My Loved One About Dying?

Many caregivers want to protect their loved ones from thoughts of dying. However, most people living with cancer are aware when their bodies are not responding to treatment. Many people feel relief when they can talk about their changing condition, such as increased fatigue or sadness.

Does speaking about dying mean that I have given up hope? No. Hope changes over time. While they no longer hope to be cured, people often hope instead for a comfortable day that is free of pain, the company of friends and family, or the safety of familiar surroundings.

Edited by Dina Smith, LMSW

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