Adjusting to Being a Caregiver
"Once a week, after I take the kids to school, I take Mom to her doctor's appointment. Then I take her home and fix her lunch and sit with her awhile. She argues with me every time because she wants to do it herself. It's hard for her to have to rely on me." - Lynn
Whether you're younger or older, you may find yourself in a new role as a caregiver. You may have been an active part of someone's life before cancer, but perhaps now the way you support that person is different. It may be in a way in which you haven't had much experience, or in a way that feels more intense than before. Even though caregiving may feel new to you now, many caregivers say that they learn more as they go through their loved one's cancer experience. Common situations that they describe:
- Your spouse or partner may feel comfortable with only you taking care of him.
- Your parent may have a hard time accepting help from you (her adult child) since she's always been used to caring for you.
- Your adult child with cancer may not want to rely on his parents for care.
- You may have health problems yourself, making it hard physically and emotionally to take care of someone else.
Whatever your roles are now, accepting the changes may be tough. It's very common to feel confused and stressed at this time. If you can, try to share your feelings with others or a support group. Or you may choose to seek help from a counselor or psychologist. Many caregivers say that talking with a counselor helped them. They feel they were able to say things that they weren't able to say to their loved ones. See "Talking with Family and Friends" for more tips.
Coping with Your Feelings
"It's emotionally exhausting, and I never know what to expect. One minute, things are looking up. Then a couple of hours later, something happens and I don't have the answers." - David
You've probably felt a range of feelings as you care for your loved one. These feelings can be quite strong and will likely come and go in strength as you go through treatment with the patient. Many caregivers describe it as being "like a rollercoaster." You may feel sad, afraid, angry, and worried. There is no right or wrong way to feel or react. These feelings are all normal.
You may relate to all of the feelings below, or just a few. You may feel them at different times, with some days being better than others. It may help to know that other caregivers have felt the same way that you do. One of the first steps to coping with feelings is to recognize that they exist and that having them is normal. Try to give yourself time to understand and work through your range of emotions.
Anger. Many caregivers say that they often feel angry with themselves, their family members, or the patient. Sometimes anger comes from feelings that are hard to show, such as fear, panic, or worry. Or it may come from resentment of all that you're going through. If you can, try to avoid lashing out at others because of these emotions. Anger can be healthy if you handle it the right way. It can help motivate you to take action, find out more, or make positive changes in your life. But if these feelings persist and you remain angry at those around you, seek help from a counselor or other mental health professional.
Grief. You may be mourning the loss of what you hold most dear--your loved one's health or the life you had with each other before cancer. It's important to give yourself permission to grieve these losses. It takes time to work through and accept all the changes that are occurring.
Guilt. Feeling guilty is a common reaction for caregivers. You may worry that you aren't helping enough, or that your work or distance from your loved one is getting in the way. You may even feel guilty that you're healthy. Or you may feel guilty for not acting upbeat or cheerful. But know that it's okay. You have reasons to feel upset and hiding them may keep other people from understanding your needs.
Anxiety and depression. Anxiety means you have extra worry, you can't relax, you feel tense, or you have panic attacks. Many people worry about how to pay bills, how things will affect the family, and of course, how their loved one is doing. Depression is a persistent sadness that lasts more than two weeks. If any of these symptoms start affecting your ability to function normally, talk with your health care provider. Don't think that you need to tough it out without any help. There are ways your symptoms can be eased during this hard time.
"There are times when you don't know how to help. You can't take away the pain. You can't take away the frustration. All you can do is be there, and it's a very helpless feeling." - CecileHope or hopelessness. You may feel hope or hopelessness to different degrees throughout your loved one's cancer treatment. And what you hope for may change over time. You may hope for a cure most of all. But you may also hope for other things, such as comfort, peace, acceptance, and joy. If you're not able to get rid of a feeling of hopelessness, talk to a trusted family member, friend, health provider, or spiritual or faith leader. As a caregiver, feelings of hope can get you through the next 5 minutes or the next 5 days.
Loneliness. You can feel alone in your role as a caregiver, even if you have lots of people around you. It's easy to feel like no one understands what you're going through. You may feel lonely because you have less time to see people and do things that you used to. Whatever your situation, you aren't alone. Other caregivers share your feelings. See "Connect with Your Loved One" for ways to connect with others.
Other Ways to Cope
Let go of mistakes. You can't be perfect. No one is. The best we can do is to learn from our mistakes and move on. Continue to do the best you can. And try not to expect too much from yourself.
Cry or express your feelings. You don't have to be upbeat all the time or pretend to be cheerful. Give yourself time to cope with all the changes you're going through. It's okay to cry and show that you are sad or upset.
Put your energy into the things that matter to you. Focus on the things you feel are worth your time and energy. Let the other things go for now. For example, don't fold the clothes when you're tired. Go ahead and take time to rest.
Understand where anger comes from. Your loved one may get angry with you. It's very common for people to direct their feelings at those who are closest. Their stress, fears, and worries may come out as anger. Try not to take it personally. Sometimes patients don't realize the effect their anger has on others. So it may help to share your feelings with them when they are calm. Try to remember that the anger isn't really about you.
Forgive yourself. This is one of the most important things you can do. Chances are that you are doing what you can at this moment. Each new moment and day gives you a new chance to try again.
"Growing up, we were taught two rules. One is, 'Don't sweat the small stuff.' And second, 'Everything is small stuff.' And you have to decide what's important to you. Focus on what you can do, not what you can't." - Anne
One way that caregivers cope is to focus their energy on things they can control. This can mean:
- Helping schedule doctor visits
- Helping with daily needs such as meals and errands
- Taking on your loved one's tasks
- Learning more about cancer and treatment options
- Doing whatever else you can do
Many caregivers say that, looking back, they took on too much themselves. Or they wish they had asked for help sooner. Take an honest look at what you can and can't do. What things do you need or want to do yourself? What tasks can you give to or share with others? Be willing to let go of things that aren't essential for you to do.
Setting Your Priorities
Make a list of your weekly tasks and activities. Figure out how much time you spend on each one and how important it is. Scratch things off your to-do list if they aren't important. That will give you more time for the things you really want and need to do. This may mean disappointing someone else. But you need to take care of what's important to you, regardless of what others may think. Most people will understand if you tell them what is going on.
"You have to learn that if people offer, let them do something. Ask for what you need, because they don't know. You have to be willing to let go of your pride and let them help you." - Chevonne
Accepting help from others isn't always easy. When tough things happen, many people tend to pull away. They think, "We can handle this on our own." But things can get harder as the patient goes through treatment. You may need to change your schedule and take on new tasks. As a result, many caregivers have said, "There's just too much on my plate."
Remember that getting help for yourself can also help your loved one because:
- You may stay healthier.
- Your loved one may feel less guilty about all the things that you're doing.
- Some of your helpers may offer time and skills that you don't have.
How Can Others Help You?
Would you find it helpful if someone made dinner for you or ran some of your errands? If so, you may benefit from having people help with tasks you don't have time to do.
People want to help, but many don't know what you need or how to offer it. It's okay for you to take the first step. Ask for what you need and for the things that would be most helpful to you. For example, you may want someone to:
- Help with household chores, such as cooking, cleaning, shopping, yard work, and childcare or eldercare
- Talk with you and listen to your feelings
- Drive your loved one to appointments
- Pick up a child from school or activities
- Set up a website where people can find out what support you need or receive updates on your loved one
- Look up information that you need.
- Be the contact person and help keep others updated on your loved one's situation.
Who Can Help?
Think about people who can help you with tasks. Think of all the people and groups you know, including family, friends, neighbors, and coworkers. Members of your faith community, civic groups, and associations may also be able to help. The hospital or cancer center may also be able to tell you about services they offer, or have a list of agencies to call.
Finding Respite Help
Respite (RES-pit) helpers spend time with your loved one. They can be paid or may volunteer their time. Many caregivers say they wish they had gotten respite help sooner. It can leave you free to rest, see friends, run errands, or do whatever you'd like to do. Respite caregivers can also help with physical demands, such as lifting the patient into a bed or a chair. If this service appeals to you, you may want to:
- Talk with your loved one about having someone come into your home to help out from time to time.
- Get referrals from friends, health care professionals, or your local agency on aging.
- Ask respite helpers what types of tasks they do.
You can get respite help from family and friends,but also government agencies or nonprofit groups. Whatever you do, remember that it isn't a failure on your part as a caregiver if you need some help and time to yourself.
Be Prepared for Some People to Say No
"We've gotten lots of support, and some of it comes from people we expected it from. But a lot has come from those we don't know very well. And others we do know well have stayed away. You just never know with people." - Jessie
Sometimes people may not be able to help. This may hurt your feelings or make you angry. It may be especially hard coming from people that you expected help from. You might wonder why someone wouldn't offer to help you. Some common reasons are:
- Some people may have their own problems to cope with, or a lack of time.
- They are afraid of cancer or may have already had a bad experience with cancer. They don't want to get involved and feel pain all over again.
- Some people believe it's best to keep a distance when people are struggling.
- Sometimes people don't realize how hard things really are for you. Or they don't understand that you need help unless you ask them for it directly.
- Some people feel awkward because they don't know how to show they care.
If someone isn't giving you the help you need, you may want to talk to them and explain your needs. Or you can just let it go. But if the relationship is important, you may want to tell the person how you feel. This can help prevent resentment or stress from building up. These feelings could hurt your relationship in the long run.
|Roadblock||What Others Have Done|
|"His cancer is a private thing. I'd have to tell people about it to get any support."|
You and your loved one can decide who to tell, what to tell them, and when and how. Some options are to:
|"Everyone has a lot going on. I don't want to bother them or put them out."|
If you're worried about being a burden to others, here are some things to think about:
|"I can't explain it, but I just don't feel up to reaching out right now."|
Many people don't want support when they need it most. You may often back away from your regular social life and from people in general. You may feel that it's just too much work to ask for help.
Talk with someone you trust, such as a friend, member of the faith community, or counselor. This person can help you sort out your thoughts and feelings. They can also help you find ways to get support.
|"It's my duty to take care of my family, not someone else's."||Having a support system is a way of taking care of your family. Giving some tasks to others lets you focus on those that you feel you should do yourself.|
"Our family is spread throughout the U.S., so it's hard to have a hands-on experience. But the phone calls have increased, with them calling to say, 'I love you, and what can I do for you?' Even though there isn't much they can do to help me with Mom, just to have them call more has made it a little better." - Patty
It can be really tough to be away from a loved one who has cancer. You may feel like you're a step behind in knowing what is happening with her care. Yet even if you live far away, it's possible for you to give support and be a problem-solver and care coordinator.
Caregivers who live more than an hour away from their loved ones most often rely on the telephone or email as their communication link. But using these to assess someone's needs can be limiting. Aside from true medical emergencies, long-distance caregivers are faced with judging whether situations can be dealt with over the phone or require an in-person visit.
Many long-distance caregivers say that it helps to explore both paid and volunteer ways to provide support. Try to create a support network of people who live near your loved one whom you could call day or night in a crisis or just to check in. You could also look into volunteer visitors, adult day care centers, or meal delivery services in the area. Having a copy of the local phone book for your loved one's area or a list of web sites can also give you quick access to resources. Share a list of home, work, and cell phone numbers with the health care team and others in case of an emergency.
- Ask a local family member or friend to update you daily by email. Or, consider creating a web site to share news about your loved one's condition and needs.
- Talk to electronic or computer experts to find out about other ways to connect with people. New advances using video and the Internet are being made every day.
- Airlines or bus lines may have special deals for patients or family members. The hospital social worker may also know of other resources, such as private pilots or companies that help people with cancer and their families.
- If you are traveling to see your loved one, time your flights or drives so that you have time to rest when you return. Many long-distance caregivers say that they don't allow themselves enough time to rest after their visits.
- Consider getting a phone card from a discount store to cut down on long-distance bills. Or, review your long-distance and cell phone plans. See if you can make any changes that would reduce your bills.