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?
"Some days I am 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. They
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:
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.
"There is helplessness that
you feel. 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 may 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.
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 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.
"I think there's a great
deal of preparation being
done now, almost
advanced bereavement.
Sometimes I feel myself
grieving him and he's not
even gone yet."
- Ann
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.
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 are caring for directs anger at you. She may take her stress out on you.
And sometimes medicine causes people to have more anger than they normally
would. Because of these reasons, try not to take it 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.
"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."
- David
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.
If these feelings remain, talk with a counselor or other mental health
professional.
You can still feel alone in your role as a caregiver, even if you have lots of
people around you. You may feel that 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.
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.
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.
"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.
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.
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.
Studies show that connecting with 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. 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.
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.
It can be a tricky balance between thinking too much about the cancer and not
thinking enough about it. 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.
"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 are getting more and more angry and frustrated as the
person you are caring for gets sicker. It may help to try to diffuse 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.
"I get tired and angry
because I run myself ragged
all day. Then I feel guilty
for feeling this way because
I am not the sick person.
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.
"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 Web sites with support groups have helped them a lot.
"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 help 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 e-mail.
|
"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 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, there's 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 injured yourself, 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's "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.
"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."
- Ben
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?
Once you get over the shock and fear, 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
may not 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."
- Don
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.
"I have the utmost respect
for people who've been
through and are going
through the same thing that
I am. It takes a special
person to care for somebody.
And you know, it really does
change your life for the
better."
- Steve
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 an uplifting quote 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 happens after death?
-
What is the meaning of 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 cannot be answered?
-
Who or what can support me spiritually during this time?
|
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 changes
-
Headaches
-
Anxiety, depression, or other mood changes
These ideas for taking care of yourself may sound easy. But they are a
challenge for most caregivers. You'll need to pay attention to how you're
feeling, in both body and mind. Even though you are 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.
|
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" (available at www.thehospice.org/rmvbarriers.htm)
Adapted with permission.
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 |
Body Changes |
-
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"
|
-
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
|
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