The caregiver is one of the most important members of a cancer patient's care team. As a caregiver, you will be arranging transportation, spending hours in waiting rooms, being available for emergencies, and many other tasts. Whether you are a spouse, relative, or a close friend, this is a tremendous responsibility. Here are ten tips to help you survive as a caregiver.
1. Remember: the patient is the one who is sick--not you.
Don't dwell on your own medical problems, or the inconveniences you are going through to get her to clinic. Your charge may not have the energy to provide support for you, too--and she is worried about her own health, and is feeling guilty for imposing on you. Be there for her. Be a listener. You may be the only friend she has who is willing to keep her company when she is at her worst, in pain or depressed. If you become discouraged about her condition, keep it to yourself. Remain positive and cheerful, even if you have to force yourself.
And don't forget: take care of yourself, too. Being a caregiver is a difficult and stressful job. Ask for help if you need it!
2. Clarify your role
Let the medical staff know that you are the caregiver and make sure they know how to reach you. Clarify whether you have any other legal standing, such as next-of-kin, medical "power of attorney," etc. Each of these roles has specific legal rights, such as ability to give consent for procedures, hospital visitation privileges, and phone or paper access to HIPPAA-protected information (including clinic appointments). Don't take anything for granted or you may find yourself in a bind. If you are not the next of kin, find out who has the authority and how to reach them.
3. Write it down
Take notes or bring a recorder to every doctor's visit. Note if and when your charge has side effects from treatment, or symptoms such as pain or fever. Write down questions for the doctor--and encourage your charge to do this before every clinic visit. Don't rely on your patient's or your own memory for the short time the doctor is in the room with you.
Keep your own detailed medical records, including lists of prescription drugs and over-the-counter meds, dates of clinic visits and the name of the doctor; dates of chemo, injections, and radiation; dates of tests and location; test results including X-ray results. Don't expect the doctor or emergency room to have easy access to the record, because HIPAA rules and incompatible computer systems have made it much more difficult. You will want to get a folder or binder, because the papers really mount up.
4. Get online
Your patient should enroll in electronic medical records at every institution where he gets care, but even if he is not, you, as caregiver, will need access. You can check appointment dates and times, request prescription refills, find test results, and send messages to the doctor and her staff. Your patient may have to give permission for you to access her records and get your own password--ask the front office how to do this.
The patient and staff rely on you to get him there! Chemo treatments or procedures may be cancelled if there is no accompanying adult. If you can't be available to drive, find someone else.
6. Look for ways to reduce the time spent at the doctor's office
Many cancer patients feel that they no longer have a life because so much time is spent at the doctor's office. And if you are the caregiver you probably feel the same way. Many clinic visits are scheduled because the computer had a slot to fill, or for the convenience of the staff--not the patient. You can request alternative dates and times to suit your own convenience, unless it is a chemo or radiation appointment.
Try to bundle appointments so they take place on the same day--lab, imaging and blood work, for example; see if the blood work and X-rays can be done closer to home; speak to the doctor about changing the chemotherapy schedule if it is too demanding --some chemo can be given ever 2 or 3 weeks instead of weekly, and some can be given in pill form, for example. And doctors will make every effort to accommodate a break for a special event, such as a wedding or new grandchild. But whatever you change, be religious about keeping the chemotherapy and radiation appointments--that's why you're there in the first place.
7. Offer to help keep an eye on the paperwork
Keeping track of the bills, appointments, prescriptions and other paperwork resulting from cancer care can be a full time job! It can be overwhelming for a person who is dealing with fatigue, side effects, and pain. Unless someone takes charge, bills pile up, the mortgage and taxes are unpaid, and disaster can follow.
Your patient may not want you managing her finances, but there are things you can do to help. At the very least, offer to keep an eye on the medical bill: check for errors in dates and treatments; confirm that insurance and Medicare were billed properly and that the claim was paid. Offer to make calls if there were errors, or negotiate costs if they are unreasonable. Make sure drug prices are not excessive--and you may have to shop them around or ask the doc to consider an alternative. Remind your patient that Medicare open enrollment starts in November, which gives him the option to change to ore affordable insurance and prescription plans.
At the start of treatment make an appointment with the social worker; see if your patient qualifies for: a handicapped driving hang tag; social security disability; paid sick leave, and subsidies for medications. You, as caregiver, may want to consider taking family leave from your job if things get difficult.
Take advantage of services such as handicapped seating at concerts and theaters, wheelchairs, motorized shopping carts, etc. Find out about local services such as meals on wheels, home health care, etc.; join a cancer support group; call the local American Cancer Society and see what they have on offer.
Have a plan if cancer progresses and you need additional help as caregiver. Ask the social worker about home health and nursing care and specialized medical transport--know the options under your patient's insurance. And don't forget to find out about hospice services, so you will be prepared in advance if they are needed.
9. Plan in advance for emergencies.
Know whom to call during the day and after hours; ask what preferred ED to use. Know what symptoms require prompt attention, such as chills, fever, loss of breath, mental confusion, or sudden pain. If you call with problems, or make a trip to the ED, make sure to have available a list of medications, diagnosis, treatments, dates of treatments, and names of the doctors. Don't wait to call an ambulance or drive to the ED if things become too urgent to wait for a callback.
Make sure you discuss with your patient how she wants to deal with an emergency hospital admission--everything from moving a parked car, getting the house keys and mail, and feeding the cat. Know which relatives you will need to call, and who can consent for the patient if she becomes unconscious. Have copies of the insurance card, ID, and a signed copy of the living will (if needed).
Make sure the patient has addressed "end-of ‘life" issues well in advance.
Remind the patient to get necessary affairs in order, including passwords and access codes that you will need if she loses consciousness at any time during her treatment.
10. Keep living and having fun
The purpose of cancer treatment is to help the patient live as normal a life as possible for as long as possible. The purpose is not to be her life. Take a break to enjoy simple things, like a good movie, a restaurant meal, a glass of wine (she may have to cheat on her diet), a visit from a grandchild, a family reunion. Celebrate small victories -- this will make it easier to deal with the large defeats.