In late March, the Parkinson Society of British Columbia (BC) offered a webinar on ambiguous loss and anticipatory grief, featuring Trevor Josephson, a clinical counselor. He defined the terms ambiguous loss and anticipatory grief, shared examples from real life (with permission from the subjects), and provided recommendations for how to cope with and manage these feelings for care partners of those with Parkinson’s disease (PD). We at Stanford Parkinson’s Community Outreach listened to the webinar and are sharing our notes.
This webinar was recorded but was not yet available as of this writing. A similar webinar from the Parkinson Society BC on ambiguous loss is free to watch here: https://vimeo.com/376227417
If you have questions about the webinar, you can contact Parkinson Society British Columbia toll-free at 800-668-3330 or send a message on their website.
The speaker cited multiple books by the author Pauline Boss, MD, regarding these topics. To learn more, visit her website:
For additional resources on caregiving in PD – including downloadable guides, information about support groups, and webinars and podcasts – see this page on the Stanford Parkinson’s Community Outreach website.
Now… on to our notes from the webinar.
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Ambiguous loss and anticipatory grief – Webinar notes
Presented by the Parkinson Society British Columbia
March 25, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach
The speaker, Trevor Josephson, is a clinical counselor and Clinical Manager at Peace Arch Hospice Society. He defined ambiguous loss as a type of loss that is unclear or without closure, and anticipatory grief as the feeling that one may experience when expecting a loss or change.
Ambiguous loss can be a response to psychological absence – i.e. a loved one who is physically present but may not be emotionally or mentally available, whether due to dementia, mental illness, drug or alcohol use, or other factors – or physical absence – i.e. a loved one who is physically unavailable or living away from home. Anticipatory grief may occur before a loss that is impending or imminent, often due to the loss of an ability or relationship due to progressive illness.
As Parkinson’s diseases progresses over time, many caregivers find themselves experiencing these kinds of loss and grief, which can lead to feeling isolated. Although discussing these issues is difficult, it is also important for anyone in a caring role.
True for BOTH ambiguous loss and anticipatory grief:
- A normal reaction to an uncommon loss experience
- Can compromise relationships
- Can result in complicated grief
- May threaten the ability to cope
Many aspects of personhood may be lost: lost aspects of former personality, loss of identity and sense of control over one’s life, loss of meaning in life, and loss of the expected or planned future. Family members may feel frozen, missing the person their loved one used to be, and yet the loved one is still there – just different. Families cope with grief in different ways, according to their cultural, spiritual background, past experiences, and resources available to them.
Possible outcomes of these feelings can include a sense of sense of hopelessness or helplessness, uncertainty about one’s own identity, depression, anxiety, social isolation, and impeded grief. Complicated grief stretches on for a long time, sometimes years or even decades, and may make it difficult for someone to function.
What can help someone living with ambiguous loss?
The speaker cited works by Pauline Boss, MD, including her 2006 book, “Loss, Trauma, and Resilience.” The goal is to build resiliency to live with ambiguous loss or anticipatory grief long-term, as there may be no solution to make these feelings go away. Sometimes it is necessary to adjust our natural need for control and certainty in life, to accommodate change and factors over which we have little or no say.
- Finding or making meaning: making sense of your losses.
- Name your problem.
- Making meaning is a responsibility – no one else can do it for us.
- Reaching out for and accepting support from others.
- Understanding the role of control: adjusting the need for control and accepting uncertainty.
- Accept lack of control.
- Decrease self-blame.
- Don’t focus on uncertainty.
- Focus on what you know and can control.
- Who am I now? Weathering the change of identities:
- Be honest about the changes in yourself and others.
- Discuss roles and expectations. You can include younger family members in this discussion as well; often, they want to be included.
- Be open to change.
Try to avoid negative thinking, such as thinking that you caused the situation, or that you should just “get over” your feelings. It is okay to normalize anger and guilt, but try to express your feelings in a healthy, non-harmful way. Accept ambiguity; practice both/and thinking: rather than feeling one specific way to the exclusion of other feelings, you can feel both love for the person you are caring for AND grief that they are no longer who they used to be.
Case study: Barb and Ed
Barb was diagnosed with PD in 2017. Her early stage symptoms included difficulty walking and tremor. Later, she developed more advanced symptoms such as difficulty eating certain foods and significant fatigue. She started having good and bad days. Her husband Ed is her care partner.
“Being part of a community helps. Staying connected with family and friends.” – Ed
Case study: Sharon and Don
Sharon was diagnosed in 2005 and lived at home with her husband Don, her primary caregiver. She started to have many falls leading to trips to the emergency department, with increasingly serious injuries from stitches, contusions, and cracked ribs, eventually to a broken neck. Don made the difficult decision to move her to a care facility in 2019.
“I really do miss my wife… who and what she was before the Parkinson’s but there’s nothing I can do to change that other than to recall and cherish good memories.” – Don
Redefining hope: discovering new landscapes of hope in a world of ambiguity
Do your best to recognize and accept the changing aspects of the relationship. Adjust how you spend time with others, and focus on strengthening bonds with your family and friends. Be open to new connections as well. Increase your comfort with ambiguity and let go of the need to have answers or certainty. Adjust your expectations and see things as “good enough.”
Advice from members of the audience who have personal experience with these feelings:
It can be hard to get yourself to a new support group due to the fear of the unknown. But think of it as doing something just for you, something necessary, and try to get there. It really helps.
Regular exercise, such as going out for walks, can really improve your mood as well.
Connect with neighbors and friends to prevent yourself from becoming isolated.
- Naming these feelings makes coping easier.
- Ambiguous loss is more than just an individual experience; it is imbedded in the community.
- Ambiguous loss can change relationships with family and friends.
- Being flexible in one’s thinking style and perspective can help create meaning and hope.