A huge responsibility as caregiver has just landed in your lap. Your loved one's life rests in your hands. Below are some tips to help you manage this new role.
Make sure doctors/hospitals are in your insurance plan and treatments are covered. Cancer treatments are very expensive and can continue for a long time, depending on the type of cancer. You don’t want to pay out-of-network charges.
If you are seeking treatment out of town, also find a local doctor for emergencies.
Take a list of questions to every appointment. Write down the answers or ask if you may record the appointment. Ask the doctor to explain things in terms you understand. If you don’t know what questions to ask in the beginning, search the internet for “Questions to ask about ________ cancer” or the medical condition you are dealing with.
Try to keep your emotions at bay during the meeting with doctors. Use the appointment time focused on gathering information, and deal with your emotions later.
Get a copy of all reports from the doctor, radiology, pathology, and labs, and obtain a CD of scans and x-rays as soon as they are available. They are usually free. You may need these to provide to new doctors, hospitals, cancer treatment centers, employer (if the patient is on disability or leave of absence), or to file a claim on a cancer insurance policy.
Try to understand the terminology on the medical reports. (Look up the terminology on the internet.) It will help you understand what you’re dealing with and will make conversations with the medical team easier. Don’t be surprised if the patient doesn’t want to know anything. Some things are just too frightening and are more than the patient can handle. The caregiver can give the patient information on a need-to-know basis.
Don’t assume no news is good news. Follow up if you don’t get the results within a reasonable time. The report may have been overlooked by medical personnel.
Keep a journal of the patient's health status so you can tell the doctor about improvements or setbacks. Keep track of changes in weight, temperature, blood pressure, heart rate, oxygen level, activity level, signs of depression, changes in appetite, illness, etc. (Consider buying a blood pressure cuff and an oximeter to measure the patient's oxygen level and pulse.)
Make sure the patient has an updated will, a medical power of attorney with a separate HIPAA release authority, a living will (directive to physicians and family), and a durable power of attorney. You will need the separate HIPAA release authority to obtain the medical records if the patient is not available to pick them up. (Make sure your own documents are current, too. Tomorrow is not guaranteed for anyone.) The hospital and treatment facilities will want a copy of the medical POA with a separate HIPAA release authority and the living will. Carry a photocopy of these with you when you visit a new treatment facility.
Find out all the recommended testing and procedures available for the patient’s situation. Don’t let the doctor limit your options based on what he/she thinks the insurance will or won’t pay for. The doctor isn’t an expert on your insurance policy and doesn’t know whether your financial situation can handle paying for a possible life-saving test or procedure if the insurance doesn’t pay.
If surgery is needed, ask how long the patient should be off medications that could cause blood clots or prevent blood from clotting. This includes hormone therapy, baby aspirin, fish oil supplements, prescription blood thinners, etc. Find out when these can be resumed after surgery.
Ask your physician when you should take the patient to the emergency room if he/she runs a fever. Find out if you need to avoid giving the patient medication to bring the fever down. (Masking a fever with medication can hide the seriousness of the ailment and can alter blood test results.)
In cancer patients on chemo, a high fever can be a sign of a poor immune system or a serious blood infection such as sepsis and can become life threatening quickly.
You can either let cancer destroy you or strengthen you. The cancer patient and the caregiver can either have a pity party or learn to see life from a new angle that others may never have the opportunity to see. Make the best of your experience and help others in any way you can.
Stay tuned for:
Part 2—Emergency Room Trips
Part 3 - Organizing Paperwork
Part 4–Cancer Treatment
Part 5–Financial Matters
Part 6–Caregiver Support
Part 7–Planning Ahead for Terminal Patients