Emotions of Caregiving in Parkinson’s Disease
Caregiving for someone with Parkinson’s disease (PD) can be both meaningful and demanding. Over time, the emotional weight of daily responsibilities, uncertainty about the future, and witnessing changes in a loved one’s health can take a toll. Many caregivers experience stress, frustration, guilt, sadness, or even grief long before a loss occurs. This type of “anticipatory grief” may emerge as roles shift and independence declines. Recognizing these emotions is an important part of sustaining resilience and maintaining health, for both the caregiver and the person with Parkinson’s. This page brings together resources on managing caregiver stress, understanding anticipatory grief, finding emotional balance, and seeking support through counseling, support groups, and self-care practices.
PD-Specific Caregiver Stress
15 Actionable Ways to Practice Self-Care
Published by Parkinson's Foundation
Self-care is defined as any practice that relieves stress and encourages a healthy mind and body. This short webpage lists 15 realistic ways you can implement self-care, from the practical (diet, exercise, sleep, respite) to the more esoteric (reflect on the rewards of caregiving, accept your feelings, and formulate a life plan).
Adult Day Care Programs
By Stanford Parkinson's Community Outreach Program, June 2024
This four-minute video outlines the differences between Adult Social Day Programs and Adult Day Health Programs. Denise Dagan shares tips for how to get your family member to attend and how to find a day program near you.
Care Partners and Self Care Throughout the Journey
By World Parkinson Coalition, March 2021
This one-hour webinar is presented in three parts: “Self-care: What does it mean, and will it really help?”, “Yes, you really can weave self-care into your life: Start with self-compassion”, and “How to realistically include self-care in your life when there is so much going on.”
You must register to access the archived video but it is free. After registering, return to the same page and click on, "View the archive."
Coping Skills for Care Partners
Published by Parkinson’s Foundation, 2020
This two-page fact sheet emphasizes that the Parkinson's care partner role can last decades so self-compassion is a needed skill. It outlines several self-care practices to employ to minimize stress and care for one's own health.
Dealing with Parkinson's Disease Caregiver Stress and Burnout
Published by The Michael J. Fox Foundation, September 21, 2015
This webpage provides tips to help lessen the burden of caregiving for a person with Parkinson's.
Respite Grants
By Stanford Parkinson's Community Outreach, June 2024
This four-minute video provides suggestions for how caregivers can arrange to take breaks from caregiving to rest and recharge. If finances are an issue, several organizations offer respite grants which can be used to pay for in-home caregivers and adult day programs.
Taking Care of the Caregiver: How To Prevent Caregiver Burnout
By Anita Rosen. Published by ParkinsonsDisease.net, March 2023
This short webpage addresses the challenges a care partner faces as PD progresses, with suggestions on managing stress levels.
General Caregiver Stress
14 Life-Changing Tips to Relieve Caregiver Stress
Published by CaringBridge, August 24, 2018
This blog post on caregiver stress is one of many posts to the caregiving section of the CaringBridge website as part of its mission to "build bridges of care and communication providing love and support on a health journey."
Caregiver Burnout: Steps for Coping With Stress
Published by AARP, October, 2023
Based on surveys and research, this blog post explains the causes of caregiver burnout, and the physical and mental impact it can have.
Caregiver Burnout: Steps for Coping With Stress
Published by AARP, October, 2023
Based on surveys and research, this blog post explains the causes of caregiver burnout, and the physical and mental impact it can have.
Caregiver Self-Assessment Tool
Published by Parkinson's Foundation
This one-page self assessment has 12 areas of self-care to rank on a five-point scale. Doing a self assessment at regular intervals to identify your risk factors and shed light on your needs. Share your assessment with friends and family so they can better understand your scope of caregiving. This may lead them to become more engaged in caring for the person with Parkinson's, or to support you in other ways.
Caregiver Stress
Published by Alzheimer's Association
This webpage addresses the difficulties of caring for someone with Alzheimer's or other dementia, including ways to avoid burnout
Caregiver Stress
Published by Parkinson's Foundation
Recognize the warning signs of caregiver fatigue before it leads to clinical depression. To prevent caregiver fatigue and burnout place your own physical, medical and emotional needs on equal par with the person with Parkinson's. Start by recognizing your own feelings, speak up, accept help, manage your stress, get professional help if needed, be open with family and friends. Take a brief caregiver stress inventory and make a caregiving action plan.
Caregiver Stress
Published by U.S. Department of Health and Human Services, Office on Women's Health, February, 2025
This short webpage addresses the fact that women are especially at risk for the harmful effects of caregiver stress, including depression or anxiety. Ways to prevent or relieve caregiver stress are suggested.
Caregiver Stress: Tips for Taking Care of Yourself
Published by Mayo Clinic, August, 2023
This webpage speaks to the rewards and difficulties of caregiving, and addresses that people who experience caregiver stress may be vulnerable to changes in their own health.
A Caregiver's Guide to Coping with Stress and Burnout
Published by Caring.com, July, 2025
Part of Caring.com's Caregiving Resource Center, this site provides an in-depth look into identifying the symptoms of caregiver burnout, as well as coping strategies.
Conscious Self-Care
By Duke Health, October 2021
Geriatric social worker Bryan Godfrey speaks for 30 minutes about stressors a caregiver might face, and how self-care can prevent burnout. A high-stress environment combined with unrealistic expectations will lead to burn out. By contrast, lowering the stress in your environment, which involves saying “no,” having realistic expectations, and practicing proactive self-care, can lead to growth. Registration is required, but is free.
How Much Should Family Caregivers Sacrifice?
Ethics in Society, Stanford, January 30, 2020
Larissa MacFarquhar, staff writer for The New Yorker, moderates this one-hour panel discussion, “How Much Should Family Caregivers Sacrifice?” What if the person who needs the care was a bad spouse or parent? How do different cultures think differently about these questions? Of particular interest is the concept of developing an "exit plan" to caregiving.
Self-Love: The Gift that Keeps on Giving
Published by WellMed Charitable Foundation, February 24, 2022
In this one-hour webinar, James Huysman, PsyD, LCSW, discusses the importance of having self-love, compassion, and kindness for yourself as you navigate the caregiving journey. Dr. Huysman provided tips and strategies to achieve self-love, find self-kindness, and reduce stress.
Strategies for Coping with Caregiver Stress
Published by AgingCare
Geared towards caregivers of older adults, this post clearly explains the signs of caregiver burnout and provides strategies for controlling caregiver stress
Taking Care of YOU: Self-Care for Family Caregivers
Published by Family Caregiver Alliance
Like the name suggests, this website's focus is on caregiving for family members. This publication offers advice to caregiver burnout such as setting goals and seeking solutions. It is printer friendly or available to order online for $3 per copy (shipping included).
Who Me, I'm Just Stressed Out: When Caregiver Stress May Be Anxiety, Depression, or Both
By Wellmed Caregiver Teleconnection, January 10, 2022
In this one-hour teleconference recording, Laura Wolfe, PhD, talks about the differences between stress, anxiety, and depression, how to know when feeling overstressed may be anxiety or depression, and how anxiety and depression are diagnosed and treated.
PD Caregiver Anticipatory Grief Resources
6 Questions for Exploring Your Parkinson’s-Related Grief
Published by the Parkinson's Foundation, August 24, 2021
Grief is part of the Parkinson’s disease (PD) journey as your loved one experiences changes to their body and life that you did not plan for or expect. However, grief resulting from Parkinson’s-related losses can go unrecognized or not be considered something you are allowed to grieve. When you can identify your grief, you can begin to honor it. When you honor your grief, you can better understand your emotional needs, and begin to chart a path forward. Consider these six questions as you start to explore and honor your grief.
Ambiguous Loss
By Parkinson Society British Columbia, November 28, 2019
In this one-hour webinar, clinical counselor Trevor Josephson, shares examples from real life (with permission from the subjects), and provides recommendations to Parkinson's care partners for how to cope with and manage feelings of anticipatory loss and anticipatory grief.
Caregiving, Grieving and Loss
Published by Parkinson Canada, June, 2024
This three-page fact sheet describes grief and loss as it relates to caregiving and provides suggestions for coping.
Parkinson's Caregiver Burnout: Handling Grief, Anxiety, and Depression
Published by Invigorate PT, November 8, 2018
This blog post explains how anticipatory grief can affect a person diagnosed with PD, as well as family and friends close to the person. It explores the feelings associated with this grief, as well as how those feelings can contribute to caregiver burnout.
Unlocking Strength Within: Ambiguous Loss - Understanding Uncertainty
By American Parkinson Disease Association, February 6, 2024
In this 48-minute webinar, Nicole Reidy, LCSW, discusses what ambiguous loss means within the context of being diagnosed with PD. She teaches tips for how to be resilient by finding meaning, discovering hope, and being flexible in coping with loss and the unknown. Learn to accept what has been lost and appreciate what you are still capable of doing and enjoying.
General Anticipatory Grief Resources
5 Steps for Dealing with Anticipatory Grief
Published by Visiting Nurse Service of New York
Anticipatory grief might be the hardest part of caregiving someone with Alzheimer’s disease, cancer, and other terminal illnesses. This site provides some ways caregivers can work through their feelings.
Ambiguous and Anticipatory Grief
Published by WellMed Caregiver Teleconnection, April 11, 2022
In this one-hour teleconference, dementia care and grief counseling specialist, Hollie Glover, explains what anticipatory and ambiguous grief are and how they relate to being diagnosed with and caregiving for a degenerative disorder. Hollie went into detail about how to recognize whether you are suffering from anticipatory or ambiguous grief and even more detail about how to cope.
Caregiver Grief, Part 1 - How to Recognize Anticipatory Grief
Published by Morningside Ministries Learn, October 15, 2021
This post provides a closer look at grieving for a loved while they are still here, with explanations and tips for caregivers.
Grief and Loss
Published by Family Caregiver Alliance, October, 2013
This article addresses the grief experienced when caring for someone with a chronic illness, including ambiguous loss (when someone is “there” but also not “there”) and anticipatory grief.
Grieving Before A Death: Understanding Anticipatory Grief
By Carol Bradley Bursack. Published by What’s Your Grief? September 30, 2013
This article shares the author's experience of grieving before the death of her father, how to recognize anticipatory grief, and how to seek help in coping with anticipatory grief by attending a caregiver support group or working with a mental health professional.
Grieving Before Death: Alzheimer's or Terminal Illness Grief
Published by AgingCare, January 23, 2020
This article explains how grief can begin as soon as we become aware that death is a likely possibility. For caregivers, anticipatory grief is often is coupled with an overall sense of exhaustion. A list of tips for dealing with anticipatory grief is provided.
How Caregivers Deal with Anticipatory Grief
By Paul Wynn, Published by Brain & Life, August/September 2023
A 2022 study found that a quarter of all caregivers experience anticipatory grief but the percentage may be even higher. It often goes unrecognized even though about one in 10 bereaved people will experience prolonged grief disorder, which can lead to other serious health consequences like depression, suicidal thoughts. This article suggests several healthy ways to cope.
Understanding the Grief of Caregiving: Coping with Change and Loss
By Los Angeles Caregiver Resource Center and USC Family Caregiver Support Center, March 20, 2025
In this one-hour webinar, Grace Avila, MPH, discusses the losses incurred during the caregiving journey, different types of grief reactions, and the importance of adopting healthy coping strategies during the grieving process. Grace also presents an overview of the USC Family Caregiver Support Center and its services, and concludes with a brief guided meditation.
Why is anticipatory grief so powerful?
Published by The Caregiver Space, April 16, 2015
This blog post explores the sources of anticipatory grief's power. The author, Harriet Hodgson, co-wrote a book in 2005 titled "Smiling Through Your Tears: Anticipatory Grief."
Books on Ambiguous Loss
Ambiguous Loss: Learning to Live with Unresolved Grief
By Pauline Boss, Published by Harvard University Press, 2000
Families coping with Parkinson's and other degenerative disorders deal with uncertainty surrounding incremental losses and may fluctuate between hope and hopelessness. The author suggests strategies that can cushion the pain and help families come to terms with their grief.
Myth of Closure: Ambiguous Loss in a Time of Pandemic and Change
By Pauline Boss, Published by W. W. Norton, December 14, 2021
The author identifies vague feelings of distress (anxiety, despair, and even anger) as ambiguous loss, which we experience when a rapid change causes the future to feel unclear and undefined. She offers guidance for beginning to cope with this lingering distress, and shows how the Covid pandemic has taught us to tolerate ambiguity, build resilience, and emerge from crises stronger than before.
Last updated October 2025 by Stanford Parkinson's Community Outreach.