Dr. Nicole Reidy
In early August 2025, CurePSP hosted a webinar with Dr. Nicole Reidy, a clinical social worker, on the important and under-discussed topics of ambiguous loss and anticipatory grief. While the talk was aimed at caregivers of those with PSP, CBD, and MSA (under the “CurePSP umbrella”), everyone challenged by uncertainty and ongoing loss will find this talk of interest.
Dr. Reidy explained that anticipatory grief is the grief we feel for the losses that occur before a loved one’s passing—the loss of abilities, independence, or a shared future. Ambiguous loss is a loss that is confusing and lacks clear resolution, such as when a loved one is physically present but psychologically changed by their illness. The loved one’s personality, abilities, or way of connecting has altered, creating a confusing mix of presence and absence. She explained that that grief is a normal and healthy response to loss, and there are tools to help us live with the uncertainty.
View a recording of the webinar on the CurePSP YouTube channel
Elizabeth Wong, with Stanford Parkinson’s Community Outreach, attended the webinar. She shared the following takeaways and, lower down, her detailed notes.
“Understanding Ambiguous Loss and Anticipatory Grief”
Speaker: Nicole Reidy, DSW, LCSW, University of Chicago Medicine
Webinar Host: CurePSP
Webinar Date: August 6, 2025
Notes by: Elizabeth Wong, Stanford Parkinson’s Community Outreach
Five key takeaways:
- Name Your Experience: Ambiguous Loss. Simply giving a name to the confusing mix of feelings you are experiencing can be a powerful first step. It validates that your situation is real and complex, and it allows you to begin finding ways to cope.
- Separate the Person from the Disease. Dr. Reidy called this “externalizing the blame.” The changes, frustrations, and losses you are witnessing are caused by the disease, not by your loved one. Reminding yourself of this helps to separate the person you love from the symptoms of their illness, fostering more compassion for both them and yourself.
- Find Your “Psychological Family.” This is your core support system, and it is not defined by biology. It can include friends, neighbors, support group members, or anyone who provides comfort, support, and understanding. It’s important to identify and lean on these people.
- Practice “Both/And” Thinking. This is a crucial mindset shift. It involves acknowledging both what has been lost AND what still remains. For example: “Yes, my loved one has changed and can no longer do certain things, AND I still cherish their sense of humor and the moments we can share.” This approach helps you honor the grief while also appreciating what is still present.
- Build Resilience Through Healthy Control. While you cannot control the disease, you can find small, healthy areas of your life where you do have control. This could be a consistent morning routine, a weekly call with a friend, or a daily walk. These simple routines can create a sense of stability and confidence in a life that feels uncertain.
Detailed Notes:
Editor’s Note: CurePSP focuses on PSP (progressive supranuclear palsy), CBD (corticobasal degeneration), and MSA (multiple system atrophy). Those acronyms are used below. However, this talk is NOT specific to those disorders.
Understanding Anticipatory Grief
Anticipatory grief refers to the complex set of losses experienced before a loved one’s physical passing. With a progressive diagnosis like PSP, CBD, or MSA, this grief is ongoing and multifaceted.
It’s More Than One Loss: The grief is not just for the initial diagnosis, but for a series of losses that occur as the condition progresses. These can include:
- Physical Losses: Limited mobility, loss of independence, inability to drive.
- Task-Related Losses: A care partner taking on new responsibilities like yard work or finances.
- Health-Related Losses: Embarrassment from incontinence, cognitive changes, or memory impairment.
- Caregiver Losses: A caregiver may lose their own independence or the capacity to live life in the way they used to.
A Roller Coaster of Emotions: Grief is not linear. There will be good days and difficult days. It is a process that ebbs and flows, and there is no “supposed to” way to feel or act. It is not something we simply shut the door on or “move past.”
What is Ambiguous Loss?
Ambiguous loss is a loss that is confusing, uncertain, and lacks clear resolution. Upon diagnosis, families are faced with a host of unanswered questions: What will our lives look like? How will we manage finances? What decisions will we have to make? This cloud of uncertainty is the essence of ambiguous loss.
The first step in coping is to give the experience a name. Labeling your feelings as “ambiguous loss” validates the confusion and provides a starting point for developing coping strategies.
Dr. Reidy explained there are two types of ambiguous loss. The one most relevant to neurodegenerative disease is: Physically Present, Psychologically Changed. This occurs when a person is still physically with us, but parts of them are psychologically absent or altered due to their illness. They may have a reduced ability to communicate, changes in mood or personality, or a decline in their ability to be independent. They are here, but not in the way they used to be.
Coping Strategies for Ambiguous Loss
1. Find Your “Psychological Family”
This is your core support system, which is not determined by DNA but by who makes you feel safe and understood.
Who it can be: A best friend you consider a sibling, a neighbor, a pastor, members of a club or support group, and even furry friends.
Who it can include: It can also include biological relatives like a sister or daughter. The key is that you get to choose who is a part of this supportive family.
2. Externalize the Trauma (Separate the Person from the Disease)
This is one of the most important concepts for reducing blame, shame, and frustration. It involves understanding that the symptoms and changes are caused by the disease, not by the person.
Dr. Reidy’s Example: She shared the story of a family visiting their mother with advanced dementia. The daughter, seeing how much her mother had declined, became distraught and began screaming at her, asking, “Why are you doing this to me? Why do you forget my name?” In this situation, the mother had no control over her memory loss or her physical state—that was the dementia.
Application: By blaming the diagnosis (e.g., “This is the PSP causing this,” or “This is the effect of the Parkinson’s”), you separate the person you love from their symptoms. This fosters more flexibility, compassion, and empathy, both for them and for yourself when you struggle with your own symptoms.
3. Challenge a “Mastery-Based” Culture
Our society often believes we can master, fix, or cure anything if we try hard enough. We want control and certainty, which makes it very difficult to cope with grief and loss.
The 3-Day Bereavement Myth: The workforce often gives three days for bereavement, implying that’s enough time to grieve and return to full productivity. This is an unrealistic expectation.
Dr. Reidy’s 9/11 Story: Pauline Boss, the creator of ambiguous loss theory, was a crisis worker after 9/11. Months later, someone asked her, “Why aren’t we over this yet?” She replied, “Because you’re trying to get over this… this is something we have to learn to live with.”
The Goal: The paradox is that we must learn to master our inability to have mastery. This means becoming comfortable and confident in our ability to live with uncertainty.
4. Build Resilience and Find Healthy Control
Resilience is the ability to persevere despite adversity. Dr. Reidy described it using the analogy of a steel suspension bridge in a storm—no matter how much the wind and hail batter it, the bridge remains steadfast and serves its purpose.
Healthy Control: While you can’t control the disease, you can find small, healthy areas of your life to control. This builds confidence and stability. Examples include:
- Making a smoothie every morning.
- Starting the day with meditation or prayer.
- Hosting a game night once a month.
Healthy Emotional Expression: It is crucial to find healthy ways to express difficult emotions like anger and frustration.
- The Coca-Cola Bottle Analogy: If you shake a bottle of Coke every time you’re frustrated but never open it, eventually it will explode messily when a minor trigger occurs. Expressing emotions in healthy ways—talking to a friend, journaling, crying—is like slowly twisting the cap to let the pressure out, preventing an eruption.
Allow for Rest: Resilience isn’t about constantly being strong or busy. Sometimes, the most resilient act is to rest, relax, and do nothing.
5. Embrace “Both/And” Thinking
This strategy involves holding two seemingly contradictory ideas at the same time: acknowledging the loss and appreciating what remains.
Both Absence and Presence: “Yes, my loved one can no longer walk independently, and I still love and appreciate their sense of humor and that they are here with me.”
Both Difficulty and Growth: “Yes, this is a frustrating and difficult situation, and I am learning more about myself and becoming more resilient through it.”
Making Meaning and Finding Hope
Over time, it’s possible to make meaning out of a situation that doesn’t make sense.
Dr. Reidy’s 9/11 Meaning-Making Story: A woman whose husband died in the 9/11 attacks was consumed with guilt because she had rushed him out the door that morning when he was running late. A year later, she told Pauline Boss she saw it differently: “He knew he had to get up at 6:00 AM every day. But on that day, he decided he wanted to spend one more hour with me and my daughter to show his love.”
Shifting Hope: Your loss may not change, but what you hope for can. The parents of a kidnapped child may never get their child back, but they can hope that their story inspires other parents to cherish their time together.
Question-and-Answer
Q: How can I discuss these concepts with my family, friends, care partner,etc?
A: You can share the recording of this webinar. For care partners or someone who is going to be a care partner, it would be helpful to read Loving Someone Who Has Dementia by Pauline Boss (the creator of the ambiguous loss theory). The book is not only applicable to dementia, you can simply switch the terminology to Parkinson’s, PSP, etc., as the principles in the book apply broadly. There are resources on the website ambiguousloss.com to help explain the concept to loved ones.
Q: Does processing anticipatory grief help when someone passes away?
A: Yes, grieving beforehand is extremely healthy. It gives you the ability to work through, accept, and acknowledge your emotions over time. Grief should not be rushed. Denial can be a coping mechanism, a sign that your body isn’t ready to fully accept the loss yet.
Q: Do you have mindfulness techniques or anything you recommend for someone who wants to sit with their feelings but isn’t quite sure how to begin?
A: It’s normal to be confused. A simple tool is a “feelings chart” or “feelings wheel” (you can Google this). You can look at it each day and simply circle or put a sticker on the feeling that resonates most. Sometimes just seeing what comes to your mind is a good start. For more support, a support group or individual counselor can be very helpful.
Q: How do the interventions for coping with ambiguous loss differ from grieving traditional loss such as death of a loved one?
A: The core strategies for building resilience, such as expressing emotions and advocating, are effective for coping with both ambiguous loss (while a loved one is living) and traditional grief (after they have passed).
I continue to advocate for a loved one lost to Alzheimer’s by attending events and running the Chicago Marathon in their honor. This demonstrates that you can continue to honor and “fight for” a loved one even after they are physically gone, making the coping interventions for all types of grief very similar.
Q: What is the difference between grief and depression?
A: They can be intertwined. Depression is typically more chronic and continuous and there are aspects that have to be met to have a clinical diagnosis of depression. With grief, the intense emotions are often heaviest at the beginning and, while they never go away, their weight may lift or change over time. If the intense, heavy feelings are continuous for years, it may be worth getting checked for depression.
Q: How can care partners cope with guilt?
A: Guilt is a huge emotion for care partners. It helps to externalize the blame—the diagnosis is not something you or your loved one could control. When I think about guilt, I think about shame and I encourage you to check out Brené Brown who has great talks and books about shame. Be compassionate with yourself. Acknowledge all the great and helpful things you are doing. You are your loved one’s advocate, and you are helping them live the best quality of life that you can.
[Editor comment: Brené Brown is a research professor at University of Houston]