Just for Caregivers
Nearly one in four households has an informal caregiver — someone who is providing for the daily needs of a relative or friend with advanced illness.
If you are a caregiver, you may be asked to be the health care representative for your friend or loved one. In this role you will work with doctors, other medical staff and family members to ensure that your friend or loved one’s wishes, including end-of-life choices, are honored if he or she is unable to make these decisions. These tips may help you advocate on behalf of your friend or loved one:
- Learn as much as you can about your friend or loved one’s illness, possible treatments and their outcomes.
- Talk with your friend or loved one about his or her choices for care, both now and in the future. Encourage the person to put those wishes in writing.
- If you or your loved one has concerns about his or her care, make a doctor’s appointment so the doctor can allow enough time to meet with you in an unhurried way.
- Make a list of your questions so that you won't forget them.
- Speak up. Be clear about what you want to say to the doctor. Make sure you share your key concerns at the beginning of the meeting so that the doctor has plenty of time to address them. Don’t minimize symptoms or situations. Comments like, "it’s just a little pain," or "being awake all night really isn’t a problem," could lead the doctor to overlook something that concerns you.
- Ask questions. To make informed decisions, ask about the goals of the treatment plan. Sometimes a doctor’s definition of recovery can be different from what your loved one wants.
- Listen closely to what the doctors and other medical staff say. Take notes to help you remember details.
- Share your knowledge. The doctor knows medical care. You know family care. Be honest and thorough in tracking your friend or loved one’s symptoms; details are important. Consider sharing a copy of your list with the doctor as you review it.
- Separate feelings of frustration and not being able to help your loved one as much as you would like from your feeling about the doctor. Remember, you are both on the same side.
- Seek the help of a social worker or patient advocate. These professionals can help strengthen the communication between you and the doctor, if necessary.
- Be assertive. If the doctor is unresponsive to your friend or loved one’s requests, don’t be afraid to change to a different doctor.
Caregiver Organizations
- Indiana Hospice and Palliative Care Organization
Founded in 1979, this statewide not-for-profit organization is dedicated to serving terminally ill Hoosiers and their caregivers, and the professionals who care for them. - Family Care Alliance
This organization was the first community-based not-for-profit organization in the country to address the needs of families and friends providing long term care by developing services, advocating for public and private support, conducting research and educating the public. - National Alliance for Caregiving
Serves as a national resource for caregivers of the elderly and the professionals who serve them. - National Family Caregivers Association
A grassroots organization created to educate, support , and advocate for people who care for chronically ill, aged or disabled loved ones. - Rural Caregivers
A non-profit organization designed to meet specific needs of rural caregivers. - Well Spouse Foundation
A national, not-for-profit membership organization that provides support to wives, husbands and partners of the chronically ill and/or disabled.
Other Web Resources
Indiana Hospice & Palliative Care Organization, Inc.
The Indiana Hospice & Palliative Care Organization, Inc. is a statewide not-for-profit organization dedicated to educating the people of Indiana about end-of-life choices.
1720 Market Tower
10 W. Market St.
Indianapolis, IN 46204
1-800-559-5223
317-464-5145
info@ihpco.org
www.ihpco.org
Funding for Just for Caregivers was provided by the Nina Mason Pulliam Charitable Trust Fund, which seeks to help people in need, especially women, children and families; to protect animals and nature; and to enrich community life in the metropolitan areas of Indianapolis, IN and Phoenix, AZ.