Celi Adams has been a registered nurse since 1976, and a certified Oncology Nurse Clinician since 1983. Her professional activities include inpatient oncology care, service on the founding boards of two hospices, management of a general medical-surgery unit, and a consultancy business. In 1988, she co-founded Home Care Companions with Scott Jones after caring for a friend who died of AIDS. HCC is a community based nonprofit that provides free training for family caregivers on the practical aspects of home care. After Scott's death in 1990, she has continued to provide free classes for family caregivers. Currently, HCC offers programs about cancer, emphysema, congestive heart failure, and brain tumors.

Practical tips for caregivers

1) Be aware that doctors only have a thumbnail sketch of the patient's condition at home. Patients are usually well groomed and on their best behavior during the office visit. Their typical answer to the doctor's question, "How are you feeling?" is " I'm fine." If things are "fine" at home because the caregiver is consistently exhausted, tell the doctor about the state of your home life. Describe the patient's behavior, level of mobility, and the amount of time and effort you spend giving care. The only way that the doctors will be able to give a proper diagnosis, treatment, and tests or services will be from the details you've given during your experience as a caregiver.

2) In addition to your doctor, find out who can offer help in the medical office. Use the office nurse as another resource to answer your questions about treatments, medications, or other medical concerns. Nurses are often more accessible than the MD. They can also prioritize your questions for the doctor and solicit a faster response. If you need forms and bills filled out or signed, find out who handles the paperwork.

3) Inventory all your medication and supplies in the middle of every week. Make sure you have what you need to get through the weekend. It is always difficult, and often impossible, to get medication and supplies over the weekend.

4) Use a desktop calendar, appointment book, or journal with enough white space to keep track of a patient's weight, symptoms and signs, appointments and activities. Take the calendar with you when you go to the doctor's office. You'll have a record of the important points in hand to ensure an informed discussion between you and the doctor.

5) Fill all of your prescriptions at the same pharmacy. If there are any drug incompatibilities or problems, the pharmacist, familiar with your medical history, can then act as a possible check. Keep in mind that most pharmacists can answer your medication-related questions anytime and are often more accessible than your MD.

6) Every so often, bring all of your medications with you to your doctor visit for a medication review. Include your non-prescriptions like vitamins, herbal supplements, pain relievers, and cold remedies.

 

Celi Adams' Recommended Reading
The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life, authors: Nancy L. Mace, Peter V. Rabins MD, and Paul R. McHugh (Johns Hopkins, 1999) This is a great guide for families caring for persons with any kind of brain injury such as: Alzheimer's, Parkinson's, AIDS Dementia, brain tumors.

Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill, authors: Cappy Capossela, Sheila Warnock (contributor), and Sukie Miller (Fireside, 1995) A helpful guide to organizing a care-group.

Finally, I suggest you purchase any book about the disease and treatment of the disease that is specific to the person you're caring for.

 

Recommended Resources
Visit the Home Care Companions website at: www.homecarecompanions.org for additional recommended reading, HIV or cancer symptom management tips, and national resources.