Understanding the Cancer Experience When You’re a Caregiver

One of the first steps after being told someone you love has cancer will be learning about their diagnosis. This will help you understand the disease process and get an idea of what to plan for. 

Some of the first questions that you and the person with cancer can think about asking the doctor and/or the cancer care team are:

• What kind of cancer is it?
• Where is it? Has it spread to other areas from where it started?
• What are the treatment options? Which do you recommend?
• What’s the goal of this treatment?
• How long will treatment last? What will it be like? Where will it be done?
• What side effects should we expect?
• How will treatment affect everyday activities?
• What’s the likely long-term outcome?

When a person has cancer, no one can predict the outcome. There’s no way for them to know for sure, but the cancer care team can give you an idea of how things are likely to go. This will become clearer over time and as they get to know the person with cancer better.

How do we deal with medical delays?

Test result delays

Sometimes it can take a while to get results back for lab tests, imaging (x-ray, scan) tests, procedures, or biopsy . This can be even harder to deal with when you’re waiting to get test results to see if it’s cancer or if cancer has come back.

While waiting for these results, concerns and emotions may come up. It’s important to know that it’s normal for you and the patient to have these feelings. Some people find comfort in talking with other people about what’s going on, while others wish to keep it very private. Try to respect the patient’s wishes during this time.

Treatment delays

Planning cancer treatment takes time. Most people want to start treatment right away. They worry that the extra time taken to do tests or make decisions will take up time that could be spent treating the cancer.

Cancer treatment should start very soon after diagnosis, but for most cancers, it’s okay to wait a few weeks to begin treatment. This gives the person with cancer time to talk about all their treatment options with the cancer care team, family, and friends, and then decide what’s best for them.

The patient might also want to get a second opinion on what’s the best treatment. This maybe a good idea, especially if the patient can see a doctor who has more experience in treating their type of cancer. A second opinion can give the person with cancer more information and help them feel more confident about choosing a treatment plan. Learn more in Seeking a Second Opinion.

The patient also might want or need time to prepare to put their normal activities “on hold” while getting treatment. For example, arrangements for work or child care may be needed, and taking care of these things ahead of time can help the patient better focus on dealing with treatment. Learn more about these topics in the Family and Medical Leave Act and Helping Children When a Family Member Has Cancer.

If you or the patient is worried that treatment isn’t starting right away, discuss your concerns with the cancer care team and be sure that any delays will not cause more problems.

How do we deal with the uncertainty?

When a person has cancer, they go through different stages. Your understanding and your care will change over time, too There will be times when you will need to get more information about the processes of treating the cancer. You also will need to know about side effects of treatments and when to contact the cancer care team to let them know.

Some ideas that have helped others deal with uncertainty and worry and feel more hopeful are:

• Learn what you can do to keep the person with cancer as healthy as possible and learn about the services available to you. This can give you a greater sense of control.
•  Recognize when you worry. It’s normal for these thoughts to enter your mind, but you don’t have to keep them there. Some people picture them floating away. Others turn them over to a higher power to handle.
• Express feelings of worry or uncertainty with a friend or counselor you trust. Being open and dealing with emotions helps many people feel less worried. People have found that when they express strong feelings, like fear, they’re better able to let go of these feelings.
• Use your energy to focus on wellness and what you can do now to stay as healthy as you can. Remember to take care of yourself, as well as the person with cancer.
• Find ways to help yourself relax.
• Make time for regular exercise and be as active as you can.
• Control what you can. Keeping your life as normal as possible and making changes in your lifestyle are just a few of the things you can control.

You play an important role in the health of the person you are caring for, but you cannot control how they are doing physically or mentally. Your loved one may have good and not so good days. Uncertainties, highs and lows are part of dealing with cancer – no one, not even the best caregiver, can control them.

How do we deal with waiting for the diagnosis?

It can take anywhere from a few days to a few weeks to find out if it’s cancer and, if so, what kind of cancer. This is a difficult time for the patient as well as for loved ones who are aware of the possibility of cancer. Some notice that they think of worst-case scenarios and wonder if they’ll lose their loved one. Others may try to go through their days as normal as possible and not think about it. Most people have a mixture of worry and hope as they wait for the test results.

You may want to be there with your loved one when these results are shared. You can help remember questions, offer support, and begin to prepare yourself and others for what’s next.

How do we adjust to the diagnosis?

With time, the patient and loved ones will start to adjust to the cancer diagnosis. This is a time of change and action – everyone is getting used to the unexpected and different situations that they now find themselves in. Even with all the activity, some people go through their days feeling numb and withdrawn. Others may be sad, on edge, or angry. Emotions may change from minute to minute as everyone copes in their own way.

It’s important to get accurate, reliable information in writing to be ready when you or others must ask questions or coordinate care:

• What is the exact name and location of the cancer?
• What’s the stage of the cancer?
• What are the treatment plans? How are they done, and how long do they take?
• Will the patient need to be in the hospital? When and for how long?

After you know the name and stage of the cancer, you can find your cancer type to get more information about or call 1-800-227-2345 to talk with a cancer information specialist.

What do I need to know about treatment?                                                                                    

Cancer treatment varies a lot depending on the type and stage of the cancer. The most common treatments for cancer are surgery, chemotherapy, and/or radiation. Treatment may mean time in the hospital or making many trips to a clinic for radiation or chemotherapy. The patient may be able to go to some treatments on their own. For other treatments, someone may need to drive or go with them. They may need more than one type of treatment, and each type comes with its own challenges.

You’ll want to be sure that you understand the treatment options chosen by the patient and doctor, since you will probably be helping plan how to make it happen. There's more information here if you’d like to read more about treatments and their expected side effects. .

Treatment can be long or short, but even short treatments tend to throw off a person’s life for several weeks. As the caregiver, your life and your family’s lives may be a bit off, too. You may find that you need to take time off from work. See Taking Care of Yourself When You're a Cancer Caregiver for more on this.

During treatment, you’ll want to learn about general cancer info, treatment effects, and how to manage side effects.

Some questions that you might want to discuss with the cancer team ahead of time are:

• What can we do to manage side effects?
• How will we know if treatment is working?

Again, youmight want to write this information down and keep it handy. This can really help if you or someone else runs into problems later.

What tools can help the patient be more independent during and after treatment?

Assistive devices are tools that can help a person be more independent and make your job a little easier. You may also hear these called adaptive equipment or independent living aids. These tools can be something as simple as a cane, or as complex as a high-tech lift used to move the patient. Some other examples are walkers, wheelchairs, shower chairs, bath mats, grab bars, portable commodes, or urinals.

Monitored medical response systems, webcams, and intercom systems are other options that can help some patients feel safer and give the caregiver peace of mind. But even little things like a pill organizer or large wall calendar can make things easier for everyone.

Think about the tasks the person with cancer wants or needs to do and how these devices may make it easier or safer. If you’re not sure, talk to the cancer care team or maybe an occupational therapist about tools that might help at home. These professionals can give you ideas for ways to help the patient. They can also help you find out where to buy or rent the assistive devices you need. And some may be covered by health insurance, too.

What should I know about new medicines?

If the patient gets a prescription for a new medicine, be sure you know the name of the drug, what it’s for, and why they are getting it. Some other things you need to know are:

• How and when should the medicine be taken?
• What’s the dose?
• Should it be taken with food, water?
• Are there side effects? (Like sleepiness, nausea, or dry mouth?)
• How will you know if it’s working? How long before you can expect it to work?
• Will it get in the way of other medicines or supplements the patient is taking?
• Are there foods, vitamins, or medicines that should be avoided while taking this drug?
• What should you do if a dose is forgotten? Take another? Skip it?
• How much does it cost? Will health insurance cover it? Is there a generic substitute?

What if they refuse cancer treatment?

There are people who choose not to get any cancer treatment. This can be very hard for family and friends who may not agree with this choice. But for the most part, people who are able to make decisions for themselves have the right to refuse any and all treatment. 

As someone who cares about and supports the person with cancer, you may wonder why they would make this choice. Maybe the person has health problems that make cancer treatment harder or high-risk. Maybe they feel that with their age and life history, it’s just “their time.” Sometimes, the person’s religious beliefs come into play. There are many reasons why people choose to not get cancer treatment. It’s OK to ask your loved one about their reasons for refusing cancer treatment. Even though the answer may be hard to hear, the choice to refuse treatment is the patient’s – no one else’s. Sometimes, their reasons make sense to you and give you a different point of view. Your loved one may or may not ask what you think about their decision. It is helpful to remember to support their choice and help them through this time the best that you can.

Even after a person refuses cancer treatment, it’s important to make sure they fully understand their options. You may want to ask the patient to talk with a doctor about their decision and whether any treatments might help. Some patients will agree to talk with a doctor, and others won’t. But don’t be surprised if, after talking with a doctor, the person still refuses treatment. Again, they have the right to make their own choices, just as you have the right to feel the way you do. Try to see it from the point of view of the person with cancer, and continue to offer your support. 

Supportive care can help anyone with cancer – even those who are sure that they don’t want treatment for the cancer itself. Sometimes called palliative care, supportive care helps keep people with cancer from having severe pain, nausea, or other symptoms. It’s care that aims to treat symptoms, not cancer. It helps the person feel as good as possible for as long as possible. 

The person who refuses cancer care may be open to hospice. Hospice workers give palliative or supportive care so that symptoms can be controlled as the cancer runs its course. They also try to help the family and the patient make the most of the time they have left. Keep in mind that a patient who is able to make their own decisions may choose to refuse this care. This can be hard on the family and loved ones, if the person seems to be suffering with pain and other symptoms. If this happens, you can keep offering hospice and palliative care as an option. As the patient’s condition gets worse, the time may come when you cannot manage without help.

What happens when treatment ends?

After treatment most patients go into a stage of healing and recovery. Less time is spent in the clinic and you see the cancer care team less often. Patient stress may go down, but caregiver stress may not. Day-to-day care for and monitoring of the patient becomes the caregiver’s job.  The caregiver plays a key role during this time and there can be many responsibilities.

Ask the doctor these kinds of questions, and write down the answers for later:

• What kind of follow-up visits are needed? How frequent and for how long?
• Are there any symptoms we should let you know about? Who should we call for other problems?
• When will the patient be able to go back to a regular work schedule (if they have been off work or working fewer hours)?
• How will we know if the treatments worked? Are there tests for cancer after treatment?

After treatment is over, be sure that the patient has copies of their medical information. Some people collect this information as they go through treatment instead of waiting until the end. Either way, once all of this information is collected, be sure to keep copies for the patient. These records are important in the event that questions come up later or the patient needs to see a different doctor in the future.

When can the person go back to their normal activities?

In most cases, the person with cancer can slowly increase their activities at home. How quickly they can do this will depend on their physical condition and the type of cancer treatment they had, or may still be getting.

It’s possible that life-saving treatments may have an impact on the patient that may be temporary or permanent. For some people, there may be short-term effects and for others, there may be long-term effects. The long-term impact may limit the patient from going back to the activities they did before treatment. It’s normal for the patient and sometimes loved ones to grieve whatever might have been lost due to treatment. Accepting these losses can take time for both the patient and caregiver.

As the caregiver, you may find yourself continuing to do the things you did when the patient was in treatment. But it’s important that, over time, you let the patient go back to doing the things they can and should do on their own. This may take place over a period of months as the patient gets stronger. Check in every week or so to see what the patient can start doing, either alone or with a little help. If there are things that the patient can’t quite do, talk with the doctor about a referral to a physical therapist or occupational therapist. These professionals may be able to maximize the patient’s abilities by helping build muscle strength and/or offering assistive devices.

What if treatment doesn’t stop?

Sometimes treatment doesn’t end at the expected time. In some patients, cancer is treated as a chronic illness – a disease that people live with and manage on a day-to-day basis, much like diabetes or heart disease.

This can be a very demanding situation for a caregiver. You’re helping the patient as they get treatment, so there are ongoing side effects and frequent appointments to deal with. The difference is that in this case, you don’t really know how long it will last. Living with this uncertainty can be challenging..

Some patients are able to go back to work during long-term treatment, though they may need extra help just after treatments. They may also need help with home responsibilities, family, and bills. In other cases, less frequent treatments and better management of side effects mean that the caregiver can work a more normal schedule during long-term or maintenance treatment. In some cases, both the patient and caregiver go back to outside jobs. Still, chemo or other treatments usually mean that some schedule changes will be needed.

Even if everyone goes back to their jobs, someone will still need to keep up with the treatment plan, the medical records, and the bills. This can be a lot of work for the patient and caregiver. You may both need support with the amount of work that’s needed on top of working and dealing with cancer. And emotional support may be needed to help the patient, caregiver, and other family members cope with knowing that the cancer treatments are longer than expected.

When treatment stops helping – what then?

If treatment is no longer helping and the cancer is still growing, your loved one may decide to stop treatment and choose care to help them live with symptoms. This is a time when it helps to know what’s most important to your loved one. What makes their life worth living? It helps if the patient can put this into words and share it with others who are close to them.

Your loved one will have to make choices about what's most important to them. They might ask themselves whether they want to continue trying to treat their cancer, or whether they'd rather focus on enjoying the time they have left. Knowing what’s most important to the patient helps the caregiver and family members understand these decisions. Sometimes caregivers help patients set priorities to focus on. Other times, it may take someone on the cancer care team or a mental health professional to help the patient define what’s most important to them, and what can be expected from further treatment. This maybe a difficult time for everyone, and help from the cancer care team may be needed to fully understand the situation and figure out what’s best for the patient.

What do I do if the patient decides to stop cancer treatment?

If the decision to stop treatment has been made, it’s important to make sure that other family members and loved ones understand and can support the patient’s decision. This would be a good time for a family meeting, where questions can be answered, and concerns addressed. Be sure that other fill-in caregivers are invited, if they’re still involved in the patient’s care. It’s helpful for all caregivers work together to support the patient.

It’s also time to talk with the doctor about focusing on palliative (comfort) care. Palliative care helps to deal with the patient’s symptoms and often times helps them have more energy to spend time doing those things that mean the most to them. You’ll want to be in close contact with the doctor to be sure that any new symptoms are addressed quickly. For more information on what to expect at this time, you might want to read Nearing the End of Life.

If the patient is expected to live only a few months, hospice may be a good option. Hospice care is intended to relieve discomfort and make the patient able to enjoy the time they have better. In most cases, hospice is given at home and requires that the patient have a primary caregiver. For more on hospice and how it works, see Hospice Care.

If there are children in the family, it’s important for them to understand what’s going on. For ideas on talking with children and teens, see Helping Children Manage Uncertainty, Loss, and Grief.

As you work with the patient and help make the most of the rest of their life, it’s normal to feel sad and even start to grieve at the thought of losing your loved one. You’ll want to continue with your circle of support and any spiritual outlets you have. A support group or mental health professional may also help as you go through this time. You can find out more in Coping With the Loss of a Loved One.