What About the Cancer Carer

The purpose of this information is to help support you as you adjust, now that treatment is over for the person you care about.

“You need to know all that you can about not only what happens during treatment, but what to expect right afterwards–so you don’t get depressed when it doesn’t magically all go away.” – Evan

Use this information in whatever way works best for you. Each caregiver has a unique response to having had a loved one with cancer. This information was written to share common feelings and reactions that many caregivers just like you have had after treatment ended. It also offers some practical tips to help you through this time.

It’s important for caregivers to understand that even though treatment has ended, cancer survivors are still coping with a lot. Often they are still dealing with side effects from treatment and learning how to adjust to the many other changes they have gone through. They may not be returning back to normal life as soon as they, and perhaps you, had hoped.

During the course of treatment, you may have had many roles. You may have done a range of things, from helping to get a second opinion and deciding about treatment, to talking with visitors, or trying to keep your loved one’s spirits up. You may have worked with the medical team, too, about issues and concerns regarding care.

As treatment ends, patients and caregivers enter a new phase. Until now, you’ve probably stayed focused on getting the patient through treatment. You may feel that you haven’t had time to think on your own about things and come to terms with the many changes that have occurred. Did you put your own feelings and needs on hold until treatment was over? Most caregivers do.

Once treatment ends, most people want to put the cancer experience behind them. Still, many caregivers aren’t sure what to do next. It can be a time of mixed emotions – you may be happy treatment is over. But at the same time, the full impact of what you’ve gone through with your loved one may start to hit you

 One of the most common reactions by caregivers after treatment ends is to ask themselves, “Now what do I do?” They may wonder if they will be needed as much. And they may feel a sense of loss. Many have to think about how to adjust to this “new normal.”

It’s important to remember during this time that each person involved tends to adjust at his or her own pace. Some people are able to resume their regular activities right away. Others may need some extra time to recover. There may be pressure for you or your loved one to get back to the way things were before cancer. Yet it’s important to know that for some, this can still be an emotional period.

Your loved one needs time to come to terms with what has happened. She still may be coping with the effects of treatment and adjusting to all the changes. She needs to figure out a “new normal.” This means getting back to her old life, but in a way that’s probably different than before. This also applies to you. Taking time for yourself and finding a new sense of normal is a process you will be adjusting to as well.

During treatment, you took on many roles. You may have been in charge of many decisions. Your loved one may have stepped back from decisions to stay focused on getting through treatment. It’s common for caregivers to feel confused once it’s over. You may have questions such as: How do I help my loved one now? Should I go back to work, or stay at home? When will he be ready to take on former roles and responsibilities? The answers to these questions vary with each person. As you move forward, try to be patient and take things one day at a time.

The day the person you care about finishes treatment is the milestone you’ve both been waiting for. It is a time of celebration and reflection for making it through your experience. You can begin to start taking back control of your life and thinking about other things that are important to you.

You may be glad to have free time where you aren’t going to doctor visits, tests, treatment, and running related errands. Your loved one may start to feel better and you are able to venture out together to enjoy the things that are part of your life. Or you may decide to take a vacation or plan a special event. You may also have time to focus more on things you may have had to put on hold such as work and family issues.

Even though this is what you’ve been waiting for, it’s important to recognize that it’s a time when you may still have strong feelings

It’s normal to have many different feelings after treatment ends. Some caregivers say that their feelings are even more intense after treatment, since they have more time to process it all.

You may feel happy, yet sad at the same time. You may be glad and relieved that your loved one is through with treatment. But you could also feel anxious because you’re no longer doing something directed at fighting the cancer. You may feel a sense of sadness and loss at still seeing your friend or family member in a weakened state. This can also be a time when you feel more lonely and isolated than before.

For example:

  • You may miss the support you had from the patient’s health care team.
  • You may feel as if a safety net has been taken away.
  • You may feel pressure to return to your old self.
  • Friends and family may go back to their daily lives, leaving you with more to do. They may not be checking in with you as they did when your loved one was getting treatment.
  • You may still avoid going out with others for fear of something happening to your loved one while you are gone.
  • You may find it hard to relate to people who haven’t been through what you have.

You may have many feelings as you see the person you care about struggle with moodiness, depression, or loss of self-esteem. You may worry that any physical problem is a sign of the cancer returning, yet at the same time, feel thankful that this person is here and part of your life. You may look forward to putting more energy into the things that mean the most to you.

These feelings are all normal. It helps to give yourself time to reflect on your experience with cancer. People need different amounts of time to work through the challenges that they are facing.

It’s okay to cry or express your feelings as you cope with the changes that come after treatment ends. You don’t have to be upbeat all the time or pretend to be cheerful. Give yourself time to cope with what you and your loved one have gone through. Many caregivers say that the strong feelings they had right after treatment ends often lessen with time.

If feelings of sadness or despair last for more than a few weeks, this can be a sign of depression. Some signs of depression can also be symptoms of other physical problems. You may want to talk with your doctor if these feelings make it hard for you to function.

 Signs of Depression or Anxiety

  • Feeling helpless or hopeless, or that life has no meaning
  • Not feeling interested in family, friends, hobbies, or things you used to enjoy
  • Loss of appetite
  • Feeling short-tempered and grouchy
  • Not being able to get certain thoughts out of your mind
  • Crying for long periods of time or many times each day
  • Thinking about hurting or killing yourself
  • Feeling “wired,” having racing thoughts or panic attacks
  • Having sleep problems, such as not being able to sleep, having nightmares, or sleeping too much

Making Time for Yourself

If you’ve been putting your own needs aside, this may be a good time to think about how you can best care for yourself. Having some down time to recharge your mind and spirit can help you cope. You may want to think about:

  • Getting back to activities that you enjoy
  • Finding ways others can help you
  • Finding new ways to connect with friends

Let Others Help You

You may feel tempted to tell people that you and your loved one are doing fine and don’t need help. It may be that you don’t want to trouble people any longer. Chances are that both of you are tired and are still getting used to life after treatment. It may help to tell others that you’re still adjusting and let them know ways they can help.

Think about what type of support would be helpful. Do you need help from someone to do tasks? Or do you just need someone to be there to listen while you talk? The clearer you can be about your needs, the easier it is for people to help you.

Each day, try to take some time to do something for you, no matter how small it is. Some ideas include:

  • Napping
  • Exercising or doing yoga
  • Keeping up with a hobby
  • Taking a drive
  • Seeing a film
  • Working in the garden
  • Going shopping
  • Catching up on phone calls, letters, or e-mail

Are you concerned you or someone else in the family might get cancer now?

A blood relative’s cancer diagnosis may make you more concerned about whether you will get cancer, too. Most cancer is not passed down through families. Only about 5 to 10 percent of the most common cancers – breast, colon, and prostate cancer – are inherited. This is an important topic to discuss with your doctor.

Your doctor will want to know what types of cancer have been in your family and which family members had it. The more relatives you have had with certain types of cancer, the higher your risk. Talk to your doctor about prevention and screening.

If you have a strong family history of cancer, you may want to talk to your doctor about whether genetic testing is right for you. Some people like to know this, so they can get tests or cancer screenings more often.

Will their cancer come back?

After treatment ends, you may begin to worry about whether the cancer will come back. This is one of the most common fears people have, especially during the first year after treatment. As time goes by, fear of cancer returning may lessen for you, and you may find that you aren’t thinking about it as much. Yet even years after treatment, you may find that certain occasions, such as follow-up visits, anniversary of the cancer diagnosis, or even symptoms that may seem similar to when your loved one had cancer, may trigger concern and worry.

This is the time to begin shifting your focus from cancer treatment to follow-up tests and care. Your loved one should ask for a follow-up care plan. During follow-up care, the patient continues to see the doctors and specialists he saw during cancer treatment. They might recommend certain tests to monitor his health. They will also want to manage side effects from treatment and look for new ones that appear later. You may need to help keep track of information and help with your loved one’s choices for care. Being active partners in decision making can help both you and the person you care about regain a sense of control that may have been lost during treatment

If you attend appointments also, ask how you might be helpful. You may want to talk about any changes you’re seeing, no matter how small. These may be:

  • Fatigue
  • Pain
  • Lymphedema (swelling)
  • Mouth or teeth problems
  • Weight changes
  • Bowel and bladder control
  • Menopause symptoms
  • Sexual problems

Learn more about the type of cancer and recovery and what they could do for their health now. This may give you a greater sense of control.

Be open and try to face your emotions. This may help you feel less worried. Expressing strong feelings like anger or sadness may help you let go of them.

Try to use your energy to focus on wellness and what you and your loved one can do to stay as healthy as possible. This may help you to feel better about life.

Focus on controlling what you can. Try to stay involved in that persons health care if needed, keep appointments, and help with lifestyle changes. You may find that putting your life in order makes you less fearful and more in control.

Late effects of treatment

It may take time for the patient to get over the side effects from treatment. All people recover differently, based on the type of treatment they had and their overall health. If the person you care about seems frustrated, upset, or angry, it may help to understand that she may still be coping with some of the same problems that she had during treatment. Some of the most common side effects people report are:

Fatigue: Feeling tired or worn out after treatment is one of the most common side effects the first year after treatment. Rest or sleep does not “cure” this type of fatigue. For some, fatigue gets better with time, and for others it may last years.

Pain: Their skin may feel sensitive where she received radiation, or they may have pain or numbness in the hands and feet due to damaged nerves, or may have pain in a missing limb or breast.

Memory Problems: Memory and concentration problems can begin during and after treatment. They do not always go away. If a person is older, it may be hard to tell if the problems are age-related or not. Either way, some people feel that they cannot focus as they once did.

 Lymphedema The patient may have swelling caused by a build-up of fluid in the tissues. It can be quite painful. Some types don’t last very long, and other types can occur months or years after treatment. Lymphedema can also develop after an insect bite, minor injury, or burn.

Mouth or Teeth Problems: These problems include dry mouth, cavities, changes in taste, painful mouth and gums, infections, and jaw stiffness or jawbone changes. Some people also have trouble swallowing. Some of these problems may go away after treatment. Others last a long time, or never go away. Some may develop months or years after treatment.

Weight Changes: Some people have problems with weight loss because they have no desire to eat. Others have problems with weight gain. Unfortunately, the usual ways people try to lose weight may not work for them.

Bowel and Bladder Control: Some treatments or surgery may cause problems with bowel and bladder control. This may be a total loss of control for some, while others have some control, but have to make lots of sudden trips to the bathroom. These problems are very upsetting for people. People often feel ashamed or afraid to go out in public.

Menopause Symptoms: Some women stop getting their periods every month, or stop getting them altogether. For some younger women, their periods may start again, but for others they may not. Common signs are changes in periods, hot flashes, problems with the vagina or bladder, lack of interest in sex, and fatigue and sleep problems. Memory problems, mood swings, depression, and feeling irritable may also occur.

Sexual Problems: Sexual problems in the body can be caused by changes from cancer treatment or the effects of pain medicine. Sometimes these problems are caused by depression, guilt, changes in body image, and stress. Some patients lose interest in sex because they struggle with their body image, or because they are tired or in pain. Others are not able to have sex as they did before because of changes in sex organs. Other main concerns people have are symptoms of menopause, and not being able to have children.

These are all common side effects you may want to watch for

After the person you care about has finished their treatment, here are a few things to consider:

  • Give yourselves time. Many problems that you and they have now may get better over time, as each of you adjusts.
  • They may need extra emotional support to cope with physical changes or with feeling less adequate as a parent, partner, or friend.
  • If either of you are feeling constantly anxious or sad, it can be a strain on both of you.
  • Keep in mind that if they are acting angry or frustrated with you, it could be that he is still trying to adjust to recovery.
  • Couples who have honest and caring communication often find that their relationship becomes stronger after cancer.
  • Ask the person you care about how they are doing now that treatment has ended. The answer may help you both

Close Relationships

You may find that sex with your partner is different than it used to be. This can be caused by feeling tired or being afraid of causing pain. Treatment may also have affected your partner’s interest in sex or ability to perform. You can still have an intimate relationship with him in spite of these issues. Intimacy isn’t just a physical connection. It also involves feelings. Here are some ways to improve your intimate relationship:

  • Talk about it. Choose a time when you and your partner can talk and concentrate only on talking. Talk about how you both can renew your connection.
  • Try not to judge. If your partner isn’t performing, try not to read meaning into it. Let him talk about what he needs right now. Or give time and encouragement to talk when he’s ready.
  • Make space. Protect your time together. Turn off the phone and television and, if needed, find someone to take care of the kids for a few hours.
  • Go slowly. Plan an hour or so to focus on each other without being physical. For example, you may want to listen to music or take a walk. This time is about reconnecting.

 

  • Try a new touch. Cancer treatment or surgery can change your partner’s body. Places where touch once felt good may now be numb or painful. While some of these changes will go away, some may not. For now, you can figure out together what kinds of touch feel good. If you find it hard to get back to your sexual relationship, talk to a specialist about your sex life after cancer.

Coping with Work Issues

One of the greatest sources of strain is trying to balance work demands with providing care and support to people you care about. Some caregivers feel relieved to go back to work. However, for others it can be hard because you may not feel as if you’re back to normal. You may feel exhausted and find it hard to focus on work after the intense caregiving experience. Or you may not want to start back up full-time if you’re still caring for the person with cancer. People at work may expect you to be back to normal now that treatment is over. How caregiving can affect your work life includes:

  • Mood swings that leave co-workers confused or nervous about working with you
  • Trouble focusing or getting your work done
  • Being late or calling in sick because of stress

It’s a good idea to find out your company’s rules and policies. See if there are any support programs for employees. Many companies have employee assistance programs with work-life counsellors for you to talk with. Some companies have eldercare policies or other employee benefit programs that can help support you. Your employer may let you use paid sick leave to take care of your loved one, or they may let you take unpaid leave.

If your employer doesn’t have any policies in place, you could try to arrange something informally. Examples include flex-time, shift-exchanging, adjusting your schedule, or telecommuting.

 

Caregiver’s Bill of Rights

I have the right to take care of myself. This is not an act of selfishness. It will give me the ability to take better care of my loved one.

I have the right to seek help from others even though my loved one may object. I know the limits of my own endurance and strength.

I have the right to maintain parts of my own life that do not include the person I care for, just as I would if he were healthy. I know that I do everything that I reasonably can do for this person. I have the right to do some things just for myself.

I have the right to get angry, be depressed, and express difficult feelings once in a while.

I have the right to reject any attempt by my loved one to make me do things out of guilt or anger. (It doesn’t matter if she knows that she is doing it or not.)

I have the right to get consideration, affection, forgiveness, and acceptance for what I do for my loved one, as I offer these in return.

I have the right to take pride in what I’m doing. And I have the right to applaud the courage it has taken to meet the needs of my loved one.

I have the right to protect my individuality. I also have the right to a life that will sustain me in times when my loved one no longer needs my full-time help.

 

Remember, you are important to us also.