Alzheimer's Disease Health Center

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End of Life Caregiving

Are you a caregiver? You may not consider yourself a caregiver, but do you regularly:

Drive a family member, friend or neighbor to doctor's appointments?
Make meals for someone?
Help someone with household chores such as cleaning, grocery shopping, lawn care, etc?
Make regular phone calls to someone to "check in" on them?
Provide hands-on care, including bathing, help eating, toileting, or other help?
Help someone make decisions about medical decisions?
Assist someone with personal business affairs, such as bill paying?

If you answered yes to one or more of these questions you may be a family caregiver.

Caregivers provide support to someone who needs help. It doesn't matter how many hours per week are spent providing support. Caregivers may live with the person they are caring for, providing assistance with daily needs, or may visit the person weekly or call regularly. Being a caregiver involves an investment in time, energy and support.

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What it means to be a caregiver at the end of life

Dying is a natural part of life, and may be filled with mixed emotions, and times of reflection for both the dying person and caregiver. There are losses for both the person who is dying and the person who is the caregiver. Caregivers often experience a variety of feelings, including:

Loss-grieving the loss of the person who is sick, and feeling a sense of loss of your life before the illness.
Acceptance of what is happening, including your role as a caregiver with new demands and duties.
Letting go of hopes for a long-term future with the person who is sick, of life before being a caregiver.
Finding purpose and meaning in the experience. Providing care for someone who is dying can be personally rewarding even in the midst of grieving losses and balancing the demands of care giving.

Providing Care

As a caregiver you may need to provide for all aspects of your loved one's comfort. People who are near the end of life have complex needs so it is important to know various ways to provide support.

Physical Comfort

It will be very important for you to ask the person you are caring for if they are comfortable. The health care providers need to know if they are experiencing physical pain, breathing problems, confusion or other symptoms so that they can work to ease the distress. By talking with the person's physician and other healthcare providers, pain medication and other therapies can be provided to achieve a level of comfort.

Tips

Ask your loved one if they are comfortable
If they are experiencing pain ask them to describe the pain rate it on a scale of 0-10.
Write down everything they say and review this before you call the physician and health care provider.
If you have specific questions, write them down too.
Write down the answers you receive so that you can refer to the information later.