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When Someone You Love Has Advanced Cancer: Support for Caregivers

  • Posted: 01/10/2012

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Caring for Yourself

Coping with Your Feelings
Caring for Your Mind and Spirit
Making Time for Yourself
Finding Meaning
Caring for Your Body
Do You Need Help with Depression or Anxiety?

Coping with Your Feelings

"Some days I'm stressed beyond belief. Then other days I feel thankful for the time I have spent with my wife all these years. Then the next day, I feel angry that I have to juggle so much, and then I feel guilty for being angry. Basically, I never know how I'm going to feel one day to the next."Jim

You've probably had a range of feelings as you care for your loved one. These emotions can be quite strong at times and less so at others. It takes a lot of energy to stay hopeful and cope with the ongoing waves of emotion. Now that the cancer has advanced, these feelings may be even more intense. Some common feelings caregivers have may include:

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 are 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.

Hope or Hopelessness

"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."Cecile

You may feel hope or hopelessness to different degrees throughout the cancer treatment. Your hopes and dreams change with time, and shift back and forth. Although remission may no longer be possible for your loved one, it's okay to hope for other things. You can hope that you and your loved one experience comfort, peace, acceptance, and even joy in the days ahead. As a caregiver, these feelings of hope may help you get through the next 5 minutes or the next 5 days.

Sadness or Worry

You may feel sad or worried as you watch your loved one struggle with cancer. You may be concerned with how he is coping with side effects or coping with fear. Or you may be worried about bills, your family, or ending up alone.

It's okay to cry or express your feelings when you are alone or with a trusted friend. You don't have to be upbeat all the time or pretend to be cheerful. Give yourself time to cope with the changes you and your loved one may be going through.

Anxiety or 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 coping. 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. It's likely that your symptoms can be eased. See Do You Need Help with Depression or Anxiety for some warning signs of depression.

Grief

"I think there's a great deal of preparation being done now, almost advanced bereavement. Sometimes I feel myself grieving her and she's not even gone yet."Artie

Grief is the process of letting go and accepting and learning to live with loss. Part of the grieving process is feeling extreme sadness as well as other feelings. You may feel sad about the losses you've experienced and the life you used to have.

But grieving doesn't mean that you have to feel a certain way. Everyone is different. Let yourself grieve in your own way and time. For example, some people may not show as much emotion as others do when they grieve. They show their feelings by doing things, rather than talking about them. This doesn't mean that they aren't feeling "the right way" or that they need to change how they react.

You may begin to feel the loss of your loved one even before he dies. This is called anticipatory grief. It's normal to feel sad about the changes you are going through and the losses you are going to have. You may have expected your life with your friend or family member to be different than what you are going through. Feeling sad over what might have been or what is to come is expected. It's normal for you to have grief over the future loss of your loved one and all the changes involved.

Understand that these feelings are normal. And grief can come up at times when you're not expecting it. Although it can come and go in intensity, grief can last for many months. It's important to seek help from hospice staff, a mental health expert, or a support group.

Hurt Feelings

You may be feeling more sensitive right now. Being tired and stressed can put you on edge more than usual. And because of this, your feelings may get hurt more easily. This could be because you feel like you're not being helped enough. Or it could be that you feel people don't understand how much you're going through. However, one common cause of hurt feelings is when the person you're caring for directs anger at you. She may feel stressed, tired, or scared, and in turn, take her anger out on you. Or sometimes medicine causes people to have more anger than they normally would. Try not to take this personally. Ask the doctor if anger is a side effect of medicine. You may also find it helpful to share your feelings with your loved one. Sometimes patients don't realize the effect that their anger has on others. But most of all, remember that we often show our feelings, good or bad, to the people we love the most.

Anger

"It's emotionally exhausting, and I never know what to expect. One minute, things are looking up, and a couple of hours later, something happens and I don't have the answers."Beth

Many things are going on right now that can make you angry. You may be angry with yourself, your family, God, or even the person you're caring for. At first, anger can help by moving you to take action. You may decide to learn more about different treatment options or get more medical opinions. But anger doesn't help if you hold it in too long or take it out on others.

It may help to pinpoint why you are angry. This isn't always easy. Sometimes anger comes from feelings that are hard to show, such as fear, panic, or worry. Or it may come from resentment. If these feelings remain, talk with a counselor or other mental health professional.

Loneliness

You can still 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 also may feel lonely because you have less time to see people and do the things you're used to doing. Whatever your situation, you aren't alone. Other caregivers know how you feel and share your feelings. See the Resources section for resources you can use to connect with others.

Denial

You may have trouble accepting that your friend or family member may not recover. You may think that if she keeps getting treatment, something may finally work, or a new discovery will be made. There's nothing wrong with this. But try to listen to your loved one and the doctor to really hear what they're saying. Your way of coping may make the patient feel that you don't really understand what's happening. Again, it's okay to deal with things at your own pace. But be aware of the effect this may have on others.

Caring for Your Mind and Spirit

Find Comfort

Your mind needs a break from the demands of caregiving. Think about what gives you comfort or helps you relax. Caregivers say that even a few minutes a day without interruptions helps them to cope and focus.

Take 15-30 minutes each day to do something for yourself, no matter how small it is. (See "Small Things I Can Do for Me.") For example, caregivers often find that they feel less tired and stressed after light exercise. Try to make time for taking a walk, going for a run, riding a bike, or doing gentle stretches.

You may find that it's hard to relax even when you have time for it. Some caregivers find it helpful to do exercises designed to help you relax, such as stretching or yoga. Other relaxing activities include taking deep breaths or just sitting still.

Look for Positives

"I have gotten a lot of patience from caregiving. I learned it's okay for me to have all the feelings I'm having and for her to have all the ones she's having. I see that we both go through a lot."Esther

It can be hard finding positive moments when you're busy caregiving. Caregivers say that looking for the good things in life helps them feel better. Each day, try to think about something that you find rewarding about caregiving. You also might take a moment to feel good about anything else from the day that is positive - a nice sunset, a hug, or something funny that you heard or read.

Find Acceptance

You're on your own path toward accepting the fact that your loved one may die. Although it may take time, acceptance can bring feelings of peace. You may find that cancer helps you value life more. You may feel that you live each day more fully, even though the future is unknown.

Feel Thankful

You may feel thankful that you can be there for your loved one. You may be glad for a chance to do something positive and give to another person in a way you never knew you could. Some caregivers feel that they've been given the chance to build or strengthen a relationship. This doesn't mean that caregiving is easy or stress-free. But finding meaning in caregiving can make it easier to manage.

Connect with Other People

Studies show that connecting with other people is very important for most caregivers. It's especially helpful when you feel overwhelmed. Sometimes you want to say things that you just can't say to your loved one.

Try to find someone you can really open up to about your feelings or fears. You may find it helpful to talk with someone outside the situation. Some caregivers have an informal network of people to contact. Some also see a counselor or a therapist. If you're concerned about a caregiving issue, you may want to talk with your loved one's health care team. Knowledge often helps reduce fears.

Let Yourself Laugh

It's okay to laugh, even if your loved one has advanced cancer. In fact, it's healthy. Laughter releases tension and makes you feel better. You can read funny columns and comics, watch comedy shows, or talk with upbeat friends. Or remember funny things that have happened to you in the past. Keeping your sense of humor is a good coping skill.

Write in a Journal

Research shows that writing in a journal can relieve negative thoughts and feelings. It can also help improve your health. You can write about any topic. You might write about your most stressful experiences. Or you may want to express your deepest thoughts and feelings. You can also write about things that make you feel good or what went well that day. Another technique people use is to write down whatever comes to mind. It doesn't have to make sense or have correct grammar. It just gets all the "jumble" out of your mind and onto the paper.

Confront Your Anger or Frustration

"It's okay for a neighbor to ask how I'm doing when they want the answer to be, 'I'm fine.' But when I'm really not fine, all I need is to talk to someone who can understand, or just hear me out. You don't have to have an answer, just listen to me."Kathy

You may find that you're getting more and more angry and frustrated as the person you're caring for gets sicker. It may help to try to process these feelings as they happen, rather than hold them in. Ask yourself what's really causing the anger. Are you tired? Frustrated with medical care? Does your loved one seem demanding? If you can, try to let some time pass before bringing up your feelings. It may also help you to express your anger through exercise, art, or even hitting the bed with a pillow.

Let Go of Your Guilt

"I get tired and angry because I run myself ragged all day. Then I feel guilty for feeling this way because I'm not the one who is sick. Some days, though, I just can't help it. This can seem like a thankless job that I didn't sign up for."Hao

If you are feeling guilty, here are some things you can do:

  • Let go of mistakes. You can't be perfect. No one is. The best we can do is learn from our mistakes and move on. Continue to do the best you can. And try not to expect too much from yourself.
  • 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 rest instead.
  • Forgive yourself and others. Chances are good that people are doing what they can. That includes you. Each new moment and new day gives you a chance to try again.

Join a Support Group

"What I need at least once or twice a week is to talk to someone or a group of people that are in the same shoes as I am."Vince

Support groups can meet in person, by phone, or over the Internet. They may help you gain new insight into what's happening, give you ideas about how to cope, and help you know that you're not alone.

In a support group, people may talk about their feelings and what they have gone through. They may trade advice with each other and help others who are dealing with the same kinds of issues. Some people like to go and just listen. And others prefer not to join support groups at all. Some people aren't comfortable with this kind of sharing.

If you feel like you would benefit from outside support such as this but can't get to a group in your area, try a support group on the Internet. Some caregivers say websites with support groups have helped them a lot.

Use Respite Help

"Since we're taking care of Dad at home now, Mom and I take turns running each morning while the other person stays with him. It's the only way I can keep my stress level down through all this."Meredith

Many caregivers say that they wish they had gotten respite help sooner. Some say that they waited out of pride or guilt. Others just didn't think of it earlier.

Respite providers spend time with the patient so you can rest, see friends, run errands, or do whatever you'd like to do. Respite services can also help with the physical demands of caregiving, like lifting your loved one into bed or a chair. If this service sounds useful, you may want to:

  • Talk with your loved one about having someone come into your home to help out from time to time. If she seems to resist this request, you may want to ask a friend or family member to help explain why this could be good for both of you.
  • Get referrals from friends or health care professionals. Your local agency on aging should also have suggestions.
  • Ask the respite helpers what types of tasks they do.

You can get respite help from family, friends, neighbors, coworkers, members of your faith community, government agencies, or nonprofit groups. Whatever you do, remember that you haven't failed as a caregiver if you need help and relief.

Small Things I Can Do For Me

Each day, take a short vacation from caregiving:

  • Nap
  • Exercise
  • Keep up with a hobby
  • Take a drive
  • See a movie
  • Work in the yard
  • Go shopping
  • Catch up on phone calls, letters, or email

Making Time for Yourself

"I just need some quiet time. If my husband's taking a nap, I will read a book or sit on the porch because sometimes it's so intense. We have days where we go straight from chemo to radiation. It's very tiring."Adele

You may feel that your needs aren't important right now. Or maybe by the time you've taken care of everything else, you have no time left for yourself. Or you may feel guilty that you can enjoy things that your loved one can't right now.

Most caregivers say they have those same feelings. But caring for your own needs, hopes, and desires is important to give you the strength to carry on. (See the "Caregiver's Bill of Rights.")

Taking time to recharge your own body, mind, and spirit can help you be a better caregiver. And if you are sick or not feeling well, it's even more important that you take care of yourself, too. You may want to think about:

  • Finding nice things you can do for yourself - even for a few minutes
  • Finding nice things others can do or set up for you
  • Finding new ways to connect with friends
  • Taking larger chunks of time that are "off-duty"

Giving yourself an outlet to cope with your thoughts and feelings is important, too. Try to think about what would help give you a lift. Would talking with others help ease your load? Or is quiet time by yourself what you would like best? You might want some of both, depending on what's going on in your life. It's helpful to take the time to think about your own needs.

Finding Meaning

"Before her cancer, I wasn't living my life the way I should have. But when I got the opportunity to take care of my wife, I became really close to her. I have learned things about her I never knew. And we have become really close. I think about life differently, you know. I take it more seriously."Armando

Many caregivers find that the cancer experience causes them to look for meaning in their lives. Taking time to think about your life and your relationship with your loved one may help you feel a sense of closure, accomplishment, and meaning. You may want to share your thoughts with your loved one or others, or you may just want to write them down or tape-record them for yourself.

Here are some questions to ask yourself or your loved one:

  • What are the happiest and saddest times we have shared together?
  • What are the defining or most important moments of our life together?
  • What have we taught each other?
  • How has being a caregiver affected my life?

When you're ready, you may want to step back and take a further look at life together. When someone you love has cancer, you may begin to rethink the things that are important to you. Some caregivers and their loved ones may do things together that they had always planned to do. Others don't make a lot of changes. Instead, they enjoy the life they have together much more. Life can become more about the person, not the disease.

"I have found the cancer gives us a lot of time to spend together. So I ask him questions to find things out about him I didn't know. I wrote a long list out, and each day I ask him a few questions from the list. This has been really special for me and my father. And for my family, too."Ben

Some things you and your loved one can do to celebrate your life together are:

  • Make a video of special memories.
  • Review or arrange family photo albums.
  • Chart or write down your family's history or family tree.
  • Keep a daily journal of feelings and experiences.
  • Make a scrapbook.
  • Help write notes or letters to other friends and family members.
  • Read or write poetry.
  • Create artwork, do knitting, or make jewelry.
  • Choose meaningful objects or mementos together to give to others.
  • Write down or record funny or meaningful stories from the past.

You, the patient, and other family members can do whatever brings joy and meaning to your lives. Your loved one may even decide to make what is called an "ethical will." It's not a legal paper. It's something a person writes to share with people he or she cares about. Many ethical wills contain the person's thoughts on their values, memories, and hopes. They may also contain the lessons learned in life or other things that are meaningful.

Faith and Spirituality

"I have the utmost respect for people who've been through this or are going through it. It takes a special person to care for somebody. And you know, it really does change your life for the better."Louise

For some, meaning can be found in religion. Others look to another kind of higher power. Some caregivers wonder why they have to go through this experience. Others feel that they've been blessed by it. Some caregivers feel both these things.

Being spiritual is very personal and means something different for everyone. As you look at life in new ways, you may find a spiritual path helpful. Some ways to add spirituality to your daily life include:

  • Reading religious or spiritual books, listening to spiritual music, or watching related videos or TV programs
  • Keeping uplifting quotes handy
  • Praying or meditating
  • Talking with a member of your faith community or someone else with a spiritual nature
  • Visiting a place of worship
  • Finding a special place where you find beauty or a sense of calm
  • Asking the hospital social worker or recreation therapist to suggest relaxing music

Exploring Spirituality

Questions about the meaning of life and death may come up frequently now. On your own or with your loved one or a close friend, you might consider:

  • Why are we here?
  • What is a good life?
  • What is the meaning of my being a caregiver?
  • What do I look back on as most positive and negative about my life?
  • How has my faith or spirituality helped guide me as a caregiver and as a person?
  • How has my faith or spirituality changed during my life?
  • Do I have anger or other strong emotions that are directed toward God?
  • What kinds of questions do I have that can't be answered?
  • Who or what can support me spiritually during this time?

Caring for Your Body

You may find yourself so busy and concerned about your loved one that you don't pay attention to your own health. But it's very important that you take care of yourself. Taking care of yourself will give you strength to help others.

Added stress and daily demands often add to any health problems caregivers already have. They also may have one or more of the problems below:

  • Fatigue (tiredness)
  • Sleeping problems
  • Weaker immune system (poor ability to fight off illness)
  • Slower healing of wounds
  • Higher blood pressure
  • Changes in appetite and/or weight
  • Headaches
  • Anxiety, depression, or other mood changes

Taking Care of Yourself

These ideas for taking care of yourself may sound easy. But they're a challenge for most caregivers. You'll need to pay attention to how you're feeling, in both body and mind. Even though you're putting your loved one's needs first, it's important to:

  • Keep up with your own checkups, screenings, and other medical needs.
  • Try to remember to take your medicines as prescribed. Ask your doctor to give you extra refills to save trips. Find out if your grocery store or pharmacy delivers.
  • Try to eat healthy meals. Eating well will help you keep up your strength. If your loved one is in the hospital or has long doctor's appointments, bring easy-to-prepare food from home. For example, sandwiches, salads, or packaged foods and canned meats fit easily into a lunch container.
  • Get enough rest. Listening to soft music or doing breathing exercises may help you fall asleep. Short naps can energize you if you aren't getting enough sleep. But talk with your doctor if lack of sleep becomes an ongoing problem.
  • Exercise. Walking, swimming, running, or bike riding are only a few ways to get your body moving. Any kind of exercise (including working in the garden, cleaning, mowing, or going up stairs) can help you keep your body healthy. Finding at least 15-30 minutes a day to exercise may make you feel better and help manage your stress.
  • Make time for yourself to relax. You may choose to stretch, read, watch television, or talk on the phone. Whatever helps you unwind, you should take the time to do it.

Self-Care*

Myth: "Self-care means that I have to be away from my loved one."
Fact: You can do things to take care of yourself with or without your friend or family member in the room with you.

Myth: "Taking care of myself takes a lot of time away from other things."
Fact: Some self-care only takes a few minutes, such as reading an upbeat passage from a book. Other self-care can be done in bits and pieces between tasks.

Myth: "I'd have to learn how to do this 'self-care' stuff."
Fact: Whatever things make you feel happier, lighter, more relaxed, or more energized count as self-care. Think of things that you already know work for you.

* The Hospice of the Florida Suncoast. "Caring For Yourself While Caring For Others," Adapted with permission.

Do You Need Help with Depression or Anxiety?

Remember, many of the things listed below are normal. This is especially true when you are dealing with a lot of stress. But talk with your doctor if you have any of these signs for more than 2 weeks. Your doctor may have suggestions for treatment.

Changes in Your Feelings

  • A feeling of being worried, anxious, "blue," or depressed that does not go away
  • Feeling guilty or worthless
  • Feeling overwhelmed, out of control, or shaky
  • Feeling helpless or hopeless
  • Feeling grouchy or moody
  • Crying a lot
  • Focusing on worries or problems
  • Thinking about hurting or killing yourself.
  • Not being able to get a thought out of your mind
  • Not being able to enjoy things (such as food, being with friends, sex)
  • Avoiding situations or things that you know are really harmless
  • Having trouble concentrating or feeling scatterbrained
  • Feeling that you are "losing it"

Body Changes

  • Gaining or losing weight without meaning to
  • Trouble sleeping or needing more sleep
  • Racing heartbeat
  • Dry mouth
  • Sweating a lot
  • Upset stomach
  • Diarrhea (loose, watery stools)
  • Slowing down physically
  • Fatigue (tiredness) that won't go away
  • Headache or other aches and pains