| Ambiguous Loss Denise Dagan
www.stanford.edu
From:[email protected]To:[email protected],pdsupportgps-norcal,stanfordpdinfo
Sat, May 25 at 8:56 AM
On February 6 the American Parkinson Disease Association (APDA) hosted a webinar on Ambiguous Loss. The speaker, Nicole Reidy, DSW, LCSW, defined ambiguous loss and shared some ways to cope for people with Parkinson's Disease (PD) and care partners.
Ambiguity is a situation in which we don't know what is going to happen or how we will be impacted. People with PD and care partners feel ambiguous loss or grief because Parkinson's will change their lives in unpredictable and undesirable ways. The goal in coping with ambiguous loss is to find ways to cope and feel more confident living with that uncertainty.
One way to cope is to be flexible in your thinking about how Parkinson's has affected your life. It's not all bad. You probably have some pretty great friends whom you would not have met without a PD diagnosis. You are probably a stronger, more resilient person for having PD or caring for someone who does. Your family may be closer and more bonded than they would have been without the need to be extra supportive. You can be both devastated by Parkinson's AND appreciate these positive aspects.
Another important way to cope is to realize that, while you don't have control over Parkinson's, you do have control over your outlook and how you live your life. Focus on the things you can do. Make a plan to care for yourself that includes exercise, a healthy diet, good sleep, and a good healthcare care team. Set boundaries so others don't impede your plan or push you around. And set a daily routine of mindfulness, gratitude, journaling, self-care, and relaxation to minimize stress. Make time to do the things you love to do!
Resilience is the ability to persevere and keep going despite adversity. When a stressor (like Parkinson's) has no cure or solution, the goal is to build enough resilience to live with the ambiguity. To cope with feelings of ambiguous loss stay emotionally focused. Ignoring your feelings will intensify them and your Parkinson's symptoms. Nicole offered several suggestions for coping with your feelings and becoming more resilient. Scroll down to read detailed notes.
Remember that someone with PD is doing the best that they can. Try not to become angry with them or yourself. Instead, be angry with the disorder. Parkinson's is to blame for all the changes in your life - the bad and the good.
A recording of the webinar is available on the APDA YouTube channel
https://www.youtube.com/watch?v=ZMxW9-s1w1w&list=PLWc6Kqj5B4-JNWP_EcnwaYRxbP57l5jbM&index=4&t=2s
The Stanford Parkinson's website has more information about topics in this webinar:
Anticipatory Grief - med.stanford.edu/parkinsons/caregiver-corner/caregiving-topics/anticipatory-grief.html
Exercise, Diet, Sleep, and More! - med.stanford.edu/parkinsons/living-with-PD.html and med.stanford.edu/parkinsons/treating-PD.html
Support Groups in Northern California - med.stanford.edu/parkinsons/northern-california-resources/support-groups.html and Virtual Groups med.stanford.edu/parkinsons/support/video-groups.html
And now, on with my notes...
- Denise
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"Unlocking Strength Within: Ambiguous Loss -- Understanding Uncertainty"
Host: American Parkinson Disease Association (APDA)
Speaker: Nicole Reidy, DSW, LCSW
Date: February 6, 2024
Summary By: Denise Dagan, Stanford Parkinson's Community Outreach
Ambiguity is a situation in which we don't know what is going to happen in the future or how the outcome of the situation will impact us. There is a certain level of confusion, and uncertainty because not all your questions are answered.
This is apropos of having a Parkinson's diagnosis because not even doctors can tell you what the full impact on any individual will be. You know having Parkinson's will have an impact on your life, activities of daily living, your family and job.
The goal in coping with ambiguous loss is to find ways to cope and feel more confident in that uncertainty. Putting a name to what you're experiencing (ambiguous loss) may provide clarity and make you feel less alone.
There are 2 types of ambiguous loss:
1. The person is physically absent and psychologically present, so we continue to think about them. Examples of where a loved one may be physically, include: - Kidnapped
- Deployment
- Nursing home placement
- Immigration to a distant state or country
- Divorce
- Death
- Adoption to another family
2. The person is physically present and psychologically absent, so we cannot communicate with them as we used to. Examples include: - Parkinson's Disease (PD) cognitive changes, speech impairment
- Dementia
- Brain injury
- Addiction
- Mental Health issues
- Depression - emotionally unavailable
- Romantic affairs
- Obsession with technology
Identify Your Psychological Family and Externalize Trauma
Your psychological family is not necessarily related to you by blood or DNA. Rather, your psychological family is whoever, or whatever you choose as your emotional support system. - Family
- Friends
- Faith
- Pets
- Nature
- Hobbies
Anticipate that when living with or caring for someone with Parkinson's Disease, that at some point you may need additional emotional support. Identify those resources ahead of time and keep the contact information for those organizations handy. - Clergy
- Counselor or therapist
Over time a person with Parkinson's loses the ability to do things that they used to do. Both the person with PD and their loved ones will feel sadness and even grief at the incremental loss of abilities and the need to provide assistance.
That grief may be expressed as frustration or anger, but it is important to remember not to direct blame or anger toward the person with PD for their inability to do things they used to do. If anything, blame the disease itself. It is Parkinson's that prevents them from being fully capable.
Cultural Viewpoints on Loss and Grief
The way the culture in which a person lives greatly influences how a person copes with loss and grief. In the United States we tend to believe we have the ability to master and control our environment and our future. We tend to believe we can get over and move past any loss, close the book on that chapter of our lives and forget about it. Therefore, Americans may be more likely to have unrealistic expectations about how they will manage living with Parkinson's Disease.
Over the course of the disease PD brings multiple losses. Grieving multiple things at the same time is known as "complicated grief." People with PD are grieving: - diagnosis
- impact on loved ones
- change of future plans
- loss of independence
Societal expectations for how we process grief and loss can be very impactful. For example, your workplace allows five days of personal time to arrange funeral, grieve, and return to work focused and productive. Of course, in just five days with so many tasks to complete, a person hasn't even begun to process their grief.
Be flexible in the way you view loss and Parkinson's Disease. If you think about it, you probably have some pretty great new friends in the PD community whom you would not have met without a PD diagnosis. You are probably a stronger, more persistent, and more resilient person for having PD or caring for someone who does. In addition, supporting someone with Parkinson's may bring a family or community together in ways that other situations don't.
Reflect on other losses you've experienced. You will probably find that it is the struggles in life that make us grow in emotional depth and resilience.
Perfection creates tension and flexibility creates receptivity
Someone with an inflexible mentality who wants control over everything in life will have more difficulty adapting to necessary changes due to PD than someone with a flexible mentality who doesn't feel they have or need control over most things.
Think about how flexible you are and what helps or deters you from being flexible.
Ways to Feel Comfortable and Confident in Ambiguous Loss
1. Recognize the grief/loss
2. You do not have control over Parkinson's Disease, but you will feel more comfortable and confident knowing what you do have control over: - Set realistic, achievable goals
- Find ways to respond to challenges
- Lean on your psychological family for support
- Treating yourself with kindness and compassion
- Lay the blame and anger on PD, not yourself or the person you care for
- Make a plan to care for yourself
- Exercise
- Diet
- Sleep
- Care team
- Plan to spend my time with people and activities you enjoy
- Set your boundaries so others don't push you around
- Set a daily routine
- mindfulness
- gratitude / journaling
- self-care / relaxation
Resilience = the ability to persevere and keep going despite adversity
When a stressor (like Parkinson's) has no cure or solution, the goal is to build enough resilience to live with the ambiguity.
Suggestions for coping: - Stay emotionally focused
- take time for yourself
- crying
- journaling
- counseling / therapy
- scream into a pillow
- support group
- Example: Coke bottle gets shaken every time something upsets you. You need to open the lid just a little to let the pressure out. Otherwise, it will explode when the pressure builds up enough.
- Express your emotions - Take time to cope and think/talk through your feelings. Sitting with grief is not wallowing in grief.
- Educate yourself about PD symptoms and treatment, dementia, and mental health
- Remember, not everybody's experience with PD is the same
- Be sure to used vetted, peer reviewed information (especially online)
- Advocate for PD, fundraise for PD research or participate in a research study
- Both/And Thinking - Acknowledge BOTH
- disappointment of a PD diagnosis AND
- the opportunity for emotional growth, family/community bonding, etc.
-
- Work out (exercise), BUT doing nothing (resting) is also resiliency
Things to Think About
How has PD challenged you?
How has PD given you hope?
How have you adapted to changes within your loss?
How can you continue to grow and change?
What are the good and bad aspects of coping with ambiguous loss?
What have you learned about yourself?
Ambiguous Loss Resources:
ambiguousloss.com
Book List
"Ambiguous Loss: Learning to Live with Unresolved Grief," by Pauline Boss
"Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief," by Pauline Boss
"Loss, Trauma, and Resilience: Therapeutic Work With Ambiguous Loss," by Pauline Boss
"The Myth of Closure: Ambiguous Loss in a Time of Pandemic and Change," by Pauline Boss
Questions & Answers
Question: The uncertainty about how and when my disease will progress causes me anxiety every day. What do you recommend to cope with the anxiety and fear of the future?
Answer: There are many things outside your control with a PD diagnosis and you don't know what will happen.
Understand the things you do have in your control. Make a list of the strengths you still have and how you can use them to cope.
Question: Can journaling be help in processing these complex emotions? How can people get into journaling?
Answer: Journaling is an amazing tool that you can do any time. To get started, try Googling "journal prompts" (Today I'm feeling..., or My main worry is...). Sometimes, when you journal, you begin with a specific intention to reflect upon but things you weren't completely aware of may come to the fore.
Remember, this is a private thing. Nobody else will see your journal. It is a safe space to process your emotions.
Question: As a care partner, how can I support my loved one who is experiencing emotions associated with ambiguous loss, like confusion and uncertainty?
Answer: You are a huge part of their psychological family. Talk with them about their strengths and what they still have in their control.
Worry and anxiety over the future causes stress, which increases PD symptoms. Sometimes, just asking them why they are worried about a situation that hasn't happened can help them realize they should live in the present and focus on what they can still do.
Question: A listener is often frustrated with themself because of their PD symptoms. How can they be more compassionate with themself?
Answer: This is why we talked about externalizing the blame. When you start to feel the frustration directed at yourself, visualize a STOP sign. Think about how the situation is outside of your control and it is PD that is to blame - NOT your incompetence. Reframe it as, "I am doing the best I can."
Question: A Parkinson's care partner understands that she has ambiguous loss herself. This is not just an issue for people with PD.
Answer: Absolutely! Not only people with a long-term illness, but care partners and anyone can experience this!
Question: A listener cries easily and doesn't seem able to control crying in front of others. What can they do?
Answer: If you feel that crying in front of others is something that impacts your ability to socialize, consider whether these people are part of your psychological family? Perhaps it is okay to cry in front of them. Crying is a healthy way to let out strong emotions and it can be helpful for our loved ones to know the depth of our emotions.
If you are crying in front of coworkers or in settings where crying would be distracting or disruptive, you might find a therapist to help you find ways to compartmentalize your feelings.
Question: When I don't blame myself for my shortcoming due to PD, I can't take pride in my accomplishments on good days. What do you think?
Answer: It's important to acknowledge the good and bad days. Practicing mindfulness and gratitude during the good times should help.
Closing quote, "Do not speak badly of yourself, for the warrior that is inside you hears your words and is lessened by them." - David Gemmell
Denise Dagan
Stanford Parkinson's Community Outreach Program
Email: [email protected]
Mobile: 650.867.7419 (accepts texts)
Stanford Neuroscience Health Center
213 Quarry Road
Stanford CA 94304
Web: med.stanford.edu/parkinsons.html
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