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Find out exactly what kind of cancer it is.
The initial diagnosis that your parent receives from her doctor may be very clear and specific or it may be quite vague. You may find out that it's a specific type of cancer (such as colon or breast cancer), the doctor may give you more-specific terminology (such as a scientific name or some explanation of how far advanced the cancer is), or he may even tell you that the cancer can't be identified (something that happens in about one out of ten cases). Although the medical terms may be unfamiliar, they can be key to making sure your parent is getting the best possible treatment. The more you know about the specific type of cancer it is and what stage it's at, the better you'll be able to understand what your parent is up against and how you can help.
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Find out exactly what treatment your parent's doctor is recommending and what to expect.
Every type of cancer treatment has its own set of symptoms and requirements for care, as well as a treatment schedule and side effects. Knowing what to expect as your parent goes through treatment will help you prepare for the symptoms and side effects she will experience. You'll also be better prepared to coordinate supportive care such as pain relief, diet and nutrition, massage, and counseling, Understanding treatment goals will help you know how to evaluate whether the chosen plan is working. And knowing exactly what steps your parent's doctor plans to take in combating the cancer will help you.
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Ask about other treatment options.
Start with your parent's doctor, but don't hesitate to seek other opinions if he balks at your questions. You'll want to know the pros and cons of all the options available — various chemotherapy regimens, radiation, surgery — as well as experimental therapies, clinical trials, and alternative therapies such as nutrition supplements and Chinese medicine or acupuncture. Some treatment regimens are much more difficult to tolerate than others or have side effects that might affect your parent negatively. Depending on what you learn, you might ask your parent's doctor to consider another treatment based on your sense of what her body can tolerate. Or you might wish to engage an alternative practitioner to provide supportive therapy that combats side effects.
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Understand your role. What does your parent expect, want, and need?
Does your parent expect you to communicate with her doctor, or just drive her to appointments and pick up prescriptions and other items afterward? Will she be able to cook for herself, or will you be in charge of grocery shopping and meal planning? If she has to stop working, will she need financial support? Think, too, about what you can realistically do. The role of caregiver can encompass many things: driver, cook, nurse, even social coordinator. It will all seem less overwhelming if you can speak frankly with your parent about the best ways you can help -- and then find other friends and relatives to fill in whatever gaps might exist.
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Understand the prognosis.
The diagnosis tells you the type of cancer your parent has, while the prognosis tells you how far advanced the cancer is (the stage) and how likely it is to respond to treatment. This can be a difficult subject, but getting the doctor to tell you exactly what he expects to happen (as much as he can anticipate) will help you choose a plan of treatment and decide whether it's working or whether it's time to consider other options. As a caregiver, you’ll find yourself with many questions about prognosis as treatment progresses, especially when it comes to what milestones to look for and how to know whether the treatment is effective.
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Get a second opinion.
No matter how much you respect your parent's doctors, there will be times when it's important to get another perspective. But how do you find the right expert to ask? And, since this can be a tricky subject to bring up with your parent's doctor, how do you discuss it without causing tension or problems in your relationship with him? Even more important, you'll want to know how to work the system to get a second opinion quickly, cutting through the red tape.
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Understand your parent's health coverage.
Almost immediately, questions about insurance coverage will come up as you research treatment. How do you find out what's covered and what's not? You may need to know, for example, which doctors, labs, and facilities your parent's insurance company considers "in network," particularly if it's an HMO or PPO system. You'll probably also need to understand your parent's prescription drug coverage. If your parent is still employed, his company's human resources manager may be able to help you with these questions. If it's a private policy, an agent can help. And most HMOs have a business office that can pull up your parent's policy on the computer and tell you what it covers and what it doesn't. Finally, the government's Medicare website may be able to answer some questions, though it can be difficult to navigate.
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Get access to the information you need.
You'll want your parent's doctor to talk to both your parent and you about the diagnosis, recommended treatment, and prognosis. But hospital and insurance rules and regulations, as well as doctor-patient privilege, can sometimes get in the way. For full access, you'll need several legal documents. Start with a medical power of attorney and a document called a HIPAA authorization. This will enable your parent's doctor to release test results and other information to you when your parent is not available, and will let you easily obtain copies of medical records you may wish to look at or share with other providers.
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Get a signed advanced healthcare directive.
You'll be making key decisions about your parent's care, and in order to do so you need to know what she wants. This can involve asking some difficult questions about lifesaving measures, such as whether your parent wishes to be resuscitated with electrical stimulation or kept alive with artificial respirators or feeding tubes. That's why you need an advanced healthcare directive, which allows your parent to spell out the level of medical intervention she's comfortable with.
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Ask for help.
Taking care of a parent with cancer is a big job, and you can't do it all alone and shouldn't be expected to. It's a good thing, then, that family members, friends, neighbors, and other members of your community or church can help. It's just a question of turning their concern and desire to participate into concrete action. The more specific your requests, the more helpful the responses will be.
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