Caregiver Quality of Life and Self-Care
Being a caregiver has benefits. You might be feeling closer to the patient, appreciate the time you get to spend together, and know you’re helping someone you care about.
Being a caregiver is also very difficult. You must take care of the patient’s health and your own health.
It’s easy to forget about your own health when you take care of someone else. Think about traveling on an airplane. Flight attendants tell you to put on your own oxygen mask before helping another person. It is the same fora caregiver, you must take care of yourself to take care of your patient.
As a caregiver, you will have stress. You might feel some or many of the symptoms in the table below.
Signs of Stress
|You might feel: You might have: You might:|
|irritable||disgusted||stomachaches||make more mistakes|
|angry||ambivalent||headaches||not enjoy your hobbies anymore|
|sad||unmotivated||difficulty sleeping||withdraw from your friends and family|
|resentful||nervous||Feeling withdrawn from others|
If you feel stress, you are not alone. Check out the Caregiver Self-Care section for strategies to help you feel better.
You might have caregiver burnout if you:
- are physically, emotionally, or mentally exhausted from caring for a patient.
- start to feel negative and uncaring, instead of positive and caring.
- try to do too much physically, emotionally, or financially.
- don’t have enough help.
You can take an online self-assessment if you think you have caregiver burnout.
Ask your transplant team for help if you have caregiver burnout.
Being a caregiver is hard work and requires changes in lifestyles, roles, plans, and goals. You must prioritize self-care. Self-care is caring for your health and giving yourself time to cope with stressors in your life.
Self-care is different for everyone. It can be:
- rigorous exercise
- reading a book
- any healthy activity that works for you
- 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 it is ok to take care of yourself while you are a caregiver.
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.
There are many apps that can help you track and manage mood and stress. Try a couple apps to see if one is helpful for you.
- Strategies for Caregiver Self-Care (Include as printable handout at end of document)
Find the self-care activities that work for you and fit them into your daily life. Remember that you must take care of yourself to be able to take care of the patient.
Take Care of Your Health
- Don’t cancel your medical appointments.
- Continue check-ups, screenings (mammogram, colonoscopy, etc.), and vaccines (flu shot).
- Don’t ignore possible health problems.
- Take vitamins and all prescription medications.
- Get enough sleep.
- Monitor your mood and mental health. (Insert link to Caregiver Stress section above)
- Make a list of small health goals and how you will fit them in. For example: take a 10 minute walk every morning, eat fast food only once a week, or read a relaxing book for 10 minutes before bed.
- Practice meditation, mindfulness, relaxation exercises, yoga, or tai chi. Try an app like Headspace, Calm, Breathe2Relax, or Breathe.
Choose a Nutritious Diet
- Eat fruits and vegetables every day.
- Limit fast food, junk food, and late-night snacks.
- Buy healthy snacks and keep them handy.
- Look up healthy, quick recipes for meals and snacks.
- When people ask how they can help, ask them to share healthy, quick recipes. Even better, ask them to make healthy food for you.
- Choose healthy food in the hospital cafeteria, or take healthy food to the hospital.
- Drink 6-8 glass of water every day.
- Limit soda, caffeine, and sugary drinks.
- Try an app that reminds you to drink enough water and tracks your eating and drinking habits. Learn more at the Academy of Nutrition and Dietetics website: https://www.eatright.org/
Exercise improves sleep and mood, reduces stress, and increases energy and concentration.
- Be active at least 30 minutes a day, and get creative!
- Take a walk every day. Invite the patient, if possible.
- Exercise with the patient or when the patient does therapy.
- Use an app or video to do yoga at home.
- Do sit-ups or squats when you watch TV.
- Park farther away in the parking lot.
- Choose the stairs.
- Walk your dog or join your neighbor when they walk their dog.
- Dance to your favorite music.
- Stretch before you go to sleep and when you wake up.
- Do active chores, like vacuuming and dusting.
Connect with Other People
- Take care of your relationships.
- Spend positive and relaxing time with family and friends.
- Ask friends and family to visit you if you can’t leave the patient.
- Remember that the patient is also your loved one. Think about the relationship you had before the transplant. Do positive activities together, not healthcare activities
- Connect with other caregivers or join a support group (Insert link to next section, Support groups).
Set Realistic Goals and Expectations
- Remember that the transplant process can be long and difficult.
- Set realistic goals for yourself and the transplant process.
- Ask other caregivers about their experiences.
- Ask the transplant team (doctors, nurses, social workers) what they will expect of you.
- Learn about the transplant process.
Accept Help (Insert link to below Ask for Help section)
- Let others give you a break.
- Ask for help before you feel overwhelmed.
- Make a list of ways people can help you.
- If someone asks, “Can I do anything for you?” give them a specific answer:
- Make a healthy meal.
- Pick up your mail.
- Mow your lawn.
- Take your kids to school or afterschool activities.
- Use apps to help people help you.
- “Lotsa Helping Hands” – With an interactive calendar and message board, you can invite people to help with errands, medical appointments, etc. Use the app or website. https://lotsahelpinghands.com/
- “CareZone” – Write about your loved one and invite others to help with their care. It has a task list, medication log, notes, photos, etc. Use the app or website. https://carezone.com/home
- Stand With App – Invite people to join this app to see how they can help you. List activities like giving a ride to the hospital, taking your dog for a walk, etc. This app gives you more privacy that social media. https://www.standwithapp.com/
- Meal Train - https://www.mealtrain.com/
- Find help with communication, so you don’t have to call everyone with updates.
- Choose a person who will share updates with friends and family.
- Create an email chain, private social media account, or group text to share updates.
- Use a communication app for caregivers:
- “Caring Bridge” – Share updates, care arrangements, pictures, and messages with family and friends. Use the free app or website. https://www.caringbridge.org/
- “Caring Village” – Create a “village” of family and friends to coordinate care. It includes a calendar, document storage, medication list, and wellness journal. Use the app or website. https://www.caringvillage.com/
Don’t Use Alcohol or Drugs
Alcohol and drugs might give short-term relief. Over time, though, alcohol and drugs cause stress, moodiness, exhaustion, and health problems.
- Ask your transplant center (Insert link to list in Section III: Questions to ask…) if they require patients and caregivers to be free of alcohol, tobacco, and illegal drugs before and after transplant.
- Talk to your doctor if alcohol causes trouble in your relationships, at work or school, in social activities, or in how you think and feel. (https://www.cdc.gov/alcohol)
- Don’t use illegal drugs.
- Use prescription medication exactly as prescribed, especially stimulants (Adderall, Concerta, etc) and benzodiazepines (Xanax, Valium, etc).
- Stop or limit tobacco, including e-cigarettes. For help quitting:
- Ask for help with drug or alcohol use if you:
- start taking the patient’s or other family member’s medications.
- fill prescriptions for the patient or other family members too early or too often.
- don’t enjoy activities you used to enjoy.
- withdraw from (spend less time with) friends and family.
- hide pill bottles or take other people’s medications home “for safekeeping”.
- feel overly protective or secretive about medications.
- notice a lot pill bottles or alcohol containers in your home or the patient’s home.
- have physical changes like red or glassy eyes, runny nose, or constant sniffling.
- have bad personal hygiene.
Ask for Help
- Ask for help. Being a caregiver is hard. You do not have to do it alone.
- Feeling depressed, anxious, or frustrated is normal. You are not a “bad” caregiver.
- Talk to your doctor or a mental health professional if you:
- have intense mood changes, anxiety, or panic and it’s hard to get through the day.
- avoid people or situations that cause feelings of depression or anxiety. (Insert link to Table 1).
- think about hurting yourself or do not want to live.
- If you want to hurt yourself, go to the Emergency Department, call 911, or call a suicide hotline.
- Find a mental health provider:
- Ask your doctor, health insurance, or transplant team for a referral.
- Use the Psychology Today “Find a Therapist” website to search by location, insurance, therapy type, gender, etc. (https://www.psychologytoday.com/us/therapists).
- Learn strategies to talk about your mental health: https://www.nimh.nih.gov/health/publications/tips-for-talking-with-your-health-care-provider/index.shtml
- General mental health resources:
- National Institute of Mental Health https://www.nimh.nih.gov/health/find-help/index.shtml
- National Alliance on Mental Illness (NAMI) resource list: https://www.nami.org/Find-Support/NAMI-HelpLine/Top-HelpLine-Resources
- USA Mental Health First Aid resource list: https://www.mentalhealthfirstaid.org/mental-health-resources/
- US Department of Veteran Affairs mental health website https://www.mentalhealth.va.gov/
- CDC mental health tools and resources: https://www.cdc.gov/mentalhealth/tools-resources/index.htm
- Mental Health America: https://www.mhanational.org/
- National Suicide Prevention Hotline: https://suicidepreventionlifeline.org/
- Support Groups and Connecting with Others
- Talk to family, friends, church, or other spiritual supports.
- Ask your job about resources like an Employee Assistance Program.
- Ask your transplant team for help connecting with resources or other caregivers.
- Ask if the transplant center has a caregiver support group.
- During hospital admissions, ask about social workers, psychology, chaplain services, psychiatry, music therapy, art therapy, pet therapy, etc.
- Find support through caregiving organizations:
- UNOS Transplant Living Community: https://transplantliving.org/community/
- Today’s Caregiver: https://caregiver.com/cg-community - The community page has (non-transplant-specific) articles, podcasts, book clubs, and ways to connect with other caregivers.
- Caregiver Action Network: https://caregiveraction.org/forum - Post messages and connect to other caregivers on the Care Community page.
- American Psychological Association “State and National Resource Locators and Tools to Coordinate Caregiver Support”: https://www.apa.org/pi/about/publications/caregivers/resources/locators
- Caring for the Caregiver: http://caringforthecaregiver.org/, http://caringforthecaregiver.org/resources/organizations/
- National Alliance for Caregiving - https://www.caregiving.org/
- Find a Transplant Recipients International Organization (TRIO) group: https://www.trioweb.org/chapters/active-chapters.html – TRIO is a nonprofit organization that helps transplant candidates, recipients, families, and the families of organ and tissue donors.
- Join an in-person or online support group:
- Support groups for patients and families (could include caregivers): https://transplantliving.org/community/support-groups/
- Website to search for nearby caregiver support groups (not transplant specific): https://resources.caregiver.com/
- Well Spouse Association support groups, online chat forum, peer mentors, etc.: https://wellspouse.org/
- https://thecaregiverspace.org/ - a support website for caregivers of all types
- http://transplantfriends.ning.com - a support website for transplant caregivers
- The Transplant Caregivers - Partners for Life Facebook group - https://www.facebook.com/groups/PartnersForLife/
- Do you offer mental health services to caregivers?
- Do you have a caregiving support group?
- What are the requirements for alcohol, tobacco, and illegal drug use for patients and caregivers?
- Who offers support when the patient is in the hospital?
- Do you offer a social worker, chaplain, pet therapy, art therapy, or music therapy when the patient is in the hospital?
Self-Assessment for Caregiver Burnout, Depression, and Anxiety:
- Caregiver burnout: https://www.healthinaging.org/tools-and-tips/caregiver-self-assessment-interactive
- Depression: https://screening.mhanational.org/screening-tools/depression?ref=CAN
- Anxiety: https://www.mayoclinic.org/diseases-conditions/anxiety/symptoms-causes/syc-20350961
Mental Health Assistance:
- How to Talk to Health Care Providers About Mental Health: https://www.nimh.nih.gov/health/publications/tips-for-talking-with-your-health-care-provider/index.shtml
- Psychology Today “Find a Therapist” Website: https://www.psychologytoday.com/us/therapists
- National Suicide Prevention Hotline: https://suicidepreventionlifeline.org/
- General Mental Health Resource: https://www.mentalhealth.gov/
- National Institute of Mental Health: https://www.nimh.nih.gov/health/find-help/index.shtml
- National Alliance on Mental Illness (NAMI) Resource List: https://www.nami.org/Find-Support/NAMI-HelpLine/Top-HelpLine-Resources
- USA Mental Health First Aid Resource List: https://www.mentalhealthfirstaid.org/mental-health-resources/
- US Department of Veteran Affairs Mental Health website: https://www.mentalhealth.va.gov/
- CDC Mental Health Tools and Resources: https://www.cdc.gov/mentalhealth/tools-resources/index.htm
- Mental Health America: https://www.mhanational.org/
- Substance Abuse and Mental Health Administration: https://www.samhsa.gov/
Transplant Specific Caregiver Support Group Resources:
- UNOS Transplant Living Community support groups: https://transplantliving.org/community/support-groups/
- Transplant Recipients International Organization (TRIO): https://www.trioweb.org/chapters/active-chapters.html
- Transplant Caregiver Support: http://transplantfriends.ning.com/
- The Transplant Caregivers - Partners for Life Facebook Group: https://www.facebook.com/groups/PartnersForLife/
- Gift of Life Family House - Online Transplant Caregiver Support Group: https://www.facebook.com/groups/caregiverlifeline
Transplant Caregiver Videos:
- “Preparing for the Transplant Journey: A Guide for Patients and Their Caregivers” video: https://www.youtube.com/watch?v=GjD00PXbYgY
- Self-care in the context of primary health care: Report of the Regional Consultation, Bangkok, Thailand, 7–9 January 2009. New Delhi: World Health Organization, Regional Office for South- East Asia; 2009. https://apps.who.int/iris/handle/10665/206352
- Caregiver Bill of Rights, https://www.caregiver.org/caregiver%E2%80%99s-bill-rights
- Seattle Cancer Center Alliance- Patient and Family Education Brochures