Coping with Stress and Common Emotions

Dealing with Caregiver Stress

You might feel guilty for taking care of yourself. Remember, you must take care of yourself to be able to take care of someone else.

The “Caregiver Bill of Rights" can help you remember that taking care of yourself while you are a caregiver is okay.

I have the right to:

Take care of myself. This is not an act of selfishness. It will give me the capacity to take better care of the person I am caring for
Seek help from others even though my loved one may object. I recognize the limits of my own endurance and strength
Maintain parts of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things for myself
Get angry, have bad moods, and express other difficult feelings occasionally
Reject any attempt by the one I care for (either conscious or unconscious) to manipulate me through guilt, anger, or depression
Receive consideration, affection, forgiveness, and acceptance for what I do for the person I care for as long as I offer these qualities in return
Take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of the person I care for
Protect my individuality and my right to make a life for myself that will sustain me in the time when the person I care for no longer needs my full-time help
Expect and demand that as new strides are made in finding resources to aid transplant recipients in our country, similar strides will be made toward aiding and supporting caregivers

Adapted from “Caregiver Bill of Rights” by Jo Horne, author of Caregiving: Helping an Aging Loved One.

Common Emotions and Coping Strategies for Caregivers

You might feel some or many of the following emotions. Try the coping strategies to see if they help.

Emotion	Definition	Coping Strategy
Ambivalent	You might want to be a caregiver, and not want to be a caregiver, at the same time.	Let yourself feel both feelings. Don’t be upset with yourself. Remember that these feelings are common and they will not last forever.
Angry	Have you “lost it” while caring for someone? Anger is normal when you care for a patient who needs constant help.	Say “I’m sorry.” Forgive yourself. Find positive ways to express yourself. Learn to walk away. Give yourself a “time out.” Talk about how you feel with people you trust.
Bored	You might have to limit activities you liked doing before you were a caregiver.	Take a break. Taking time for yourself will help you be more patient. Take a walk or read. Do something that makes you happy. Ask friends or family to stay with the patient, so you can do a social activity you enjoy.
Irritable	When you are tired and stressed, you might get upset about little things or say things you regret	Take a break (again!) and breathe. We have less control of our emotions when we are tired. Don’t use alcohol or junk food to feel better. Do something healthy, like take a walk or write in a journal.
Sad	It’s normal to be sad when someone you love is sick.	Monitor your feelings. Make sure you still enjoy activities you used to enjoy. Watch a funny movie, do a hobby you enjoy, or call a friend. Talk to your doctor if, for several weeks, you are not motivated to do (or do not enjoy) any activities. This is a symptom of depression. If you think you have depression, take it seriously. Depression can be treated. Ask for help. Remember you are not alone.
Disgusted	Helping the patient shower, eat, or use the bathroom might be uncomfortable. It might be hard to see or smell blood, vomit, or other bodily fluids.	Sometimes, you might think the patient is doing something disgusting on purpose, or you might feel guilty for being disgusted. These feelings are normal. Try to remember that the patient is probably not in control of the things that disgust you. Ask for help doing the activities that are most difficult for you.
Scared	You might worry that something bad will happen, and that you will be responsible. Worrying about “what ifs” can make it difficult for you to enjoy the moment.	Have backup caregivers in case something happens to you. Plan how you will manage predictable medical emergencies. If you get scared, talk to the transplant team. Worry is very normal when caring for someone who is sick. If the worry becomes overwhelming or out of control, ask your doctor for help.
Frustrated	You might feel like you can’t do anything right or nothing goes well, even when you try. When you’re tired, you can feel frustrated more easily. Sometimes, being frustrated leads to stress eating, substance abuse, or losing your temper.	Remind yourself that caregiving is frustrating. Join a support group for caregivers. Take breaks, exercise, and sleep. Give yourself time to recharge.
Grieving	It’s sad to see the patient struggle with things they could easily do before. You might miss how the patient was or the way things were before the transplant.	Do something special to help yourself move on. For example, make a list of the things the patient can’t do anymore or the things you’ve had to say goodbye to. Throw the list in the ocean or a lake. Let yourself feel sad instead of avoiding the feeling.
Guilty	Sometimes you might not want to be a caregiver, or you might not like the patient. You might feel badly you couldn’t keep the patient healthy or that you can’t help more. You might feel guilty when you think about what you need or want, especially if the patient cannot participate.	Forgive yourself. No one is perfect. Try to change “should” thoughts. Instead of, “I should not be frustrated.” Think “Everyone gets frustrated sometimes, and I am doing the best I can.”
Impatient	It’s normal to feel impatient, especially if the patient can’t do things quickly.	Forgive yourself. It is normal to want things to go quickly. Try to slow down and give the patient and yourself more time to do things. Create a list of the things you can and cannot control.
Jealous	It might feel unfair that non-caregivers (including family and friends) can do things you can’t do because you are a caregiver.	Remind yourself that it’s okay to feel jealous. Things are not fair and at times we compare ourselves to others. Focus on what you have and reasons to be grateful, not on what others have.
Not appreciated	It might be hard for the patient to accept help or depend on someone, and they might not always show appreciation.	Praise yourself for the work you do. Remind yourself you are doing something important. Journal about caregiving. Have a support group or friends and family to motivate you and cheer you on.
Lonely	You might lose contact with friends and family or feel isolated.	Find ways to get out of the house. Do activities other than caregiving. Ask friends and family for help.
Loss of power	As a caregiver, you might lose independence, control, income, time, and relationships.	Identify losses. What do you miss? Look at your losses. How can you deal with each one?
Resentful	Over time, you might resent being a caregiver. You might resent the patient or family and friends who don’t help. You might feel unsupported, trapped, or unacknowledged. You might feel guilty for thinking this way. (see # 10)	Caregiving is hard. The more help you accept, the less resentful you will feel. If family and friends are not helping you, find other people who can support you. Participate in online or in-person support groups.
Tired	If the patient needs help at night, you might not sleep well. Caregiving can be a lot of work, physically.	Prioritize sleep. Not getting enough sleep can lead to obesity, illness, impatience, inefficiency, and feeling mentally foggy. Consider your sleep hygiene (your sleep routine and atmosphere). Avoid caffeine 4 to 6 hours before bedtime. Follow a daily sleep routine. Talk to the transplant team and your doctor if you can’t fall asleep or stay asleep. Don’t try to “just deal” with being tired. This can lead to burn out.

There are many apps that can help you track and manage mood and stress. Try a couple of apps to see if one is helpful for you.

Caregiver Toolkit > Caregiver Quality of Life > Self-Care for the Caregiver

Coping with Stress and Common Emotions

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