Medical Aspects of Caregiving

If you are going to care for your loved one at home during the course of cancer treatment, your very first step, before the patient is home, is to take advantage of the knowledge and experience of your health care team and ask for their advice, instruction and support.

Get thorough instructions about care needs at home from the health care team before taking your loved one home from the hospital. Ask for written instructions, as well as a detailed explanation about any procedure or responsibility that seems difficult for you to remember. It is difficult for stressed caregivers to continuously learn new information and most hospitals provide written instructions for that reason.

Topics to cover include:

• General information. Learn about the disease process and possible treatment ahead such as chemotherapy, radiation or others.

• Warning signs. You need to be aware of the signs of a worsening physical condition in your loved one. These vary to some degree, depending on the kind of cancer involved. While the general warning signs listed above are useful, you should also ask the health care team for information specific to the kind of cancer and particular condition of your loved one.

• Any special instructions. While these vary by cancer, they may include things like:

1) managing the port or catheter if the patient has one
2) pain management and relaxation techniques
3) medications — timing, side effects and coping with these, how to administer them
4) patient activity levels — limitations and duration of these
5) nutrition/diet — including a contact name of a registered dietician who can provide assistance and advice to you or the patient if needed

• Psychosocial issues. Sometimes cancer patients experience depression, anxiety and other symptoms that can become serious. Don't let your loved one endure prolonged emotional misery; if necessary (and it often is), take the initiative and talk with the health care team for their advice and assistance, including a referral to psychiatric experts who can diagnose and prescribe steps to help. Your health care team may recommend counseling for you both, or just the patient. Also, read the sections on this site on Depression and Anxiety for more detailed information.

You may also find yourself experiencing psychological distress. Even the most capable caregivers find new roles and responsibilities like these emotionally challenging at times. Counseling and support are also important for you, so that you can be well and strong and able to fulfill your responsibilities. For more information, please see Caring for the Caregiver on this site.

• Get referrals and information about providing care. Lists of home health agencies, social service agencies in your area and other potential sources of assistance will be helpful to have on hand. Your hospital oncology social worker is a good place to learn about this information.

• Others in your shoes. You may also find it very helpful to speak with other experienced family caregivers for their ideas and insights into daily family caregiving. Such individuals will have a different and very useful perspective on what you must learn to do, and prove very helpful.

Resources