In mid-June, the World Parkinson Coalition (WPC) hosted a webinar on the emotional rollercoaster the person with Parkinson’s disease (PD) and their care partner may have at the time of diagnosis and throughout the disease progression.  This webinar was the second in WPC’s Care Partner talk series and featured social worker Elizabeth Delaney. 

Experiencing a wide range of emotions as a carepartner is normal and expected.  This webinar focused on normalizing emotions that may occur during the PD caregiving journey. The speaker also discussed the grief that comes with a PD diagnosis. Grief is a natural response to loss, and in PD the loss could include losses of function, and loss of identity.   

Elizabeth also provided some coping techniques and practical tips for care partners.  Her tips include:

• Taking care of yourself is a good first step in becoming a strong care partner
• Don’t wait until your tank is low to seek help      
• Explore outlets now, rather than when you are stressed and overwhelmed
• Meditation and yoga can help with stress and anxiety
• Mindfulness exercises can be helpful if you don’t think you have enough time for yoga
• Find hobbies that you enjoy
• Find hobbies you can do with your loved ones but also take note to have “you time”
• Find someone to talk to that you trust, such as a support group, mental health provider, a friend

Speaking of support groups, here are some PD caregiver-only support groups:

• If you are in northern California
• If you are outside of northern California and/or prefer an online format

For more resources for caregivers, please see the “Caregiver Corner” section of the Stanford Parkinson Community Outreach website

For a recording of this webinar, you’ll need to enter your name, affiliation with PD, and email address. Please see the WPC archive page here.

The webinar also featured two care partners (Bill Shapiro and Karen St. Clair), who shared their caregiver journey. 

See below for notes on the June 22nd webinar. 

Regards, 

– Joëlle Kuehn

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 “Care Partnering in Parkinson’s: The emotional rollercoaster”- Webinar Notes

Speaker: Elizabeth Delaney, LMSW, social worker, Neurological Institute at Columbia University, New York City

Webinar Host: World Parkinson Coalition

Webinar Date: June 22, 2021

Summary by Joëlle Kuehn, Stanford Parkinson’s Community Outreach

In this caregiving journey there are highs and lows, and it is important to know what you can do as a carepartner to support yourself and your loved one

Highs and lows:

• At both points in the rollercoaster, you might experience emotional reactions  
• Riding the emotional rollercoaster throughout the PD journey is normal

• Important to know what you can do as a care partner for not only your loved one but also how you can support yourself, and take care of yourself to be able to care for your loved one
• At both highs, and lows, you might experience emotional reactions
• Can occur throughout the PD journey
• Can experience:
  •  At the beginning, as an initial reaction to the diagnosis
  • Change in condition, or shifting status of the condition
• Whatever your response is, it is important to note that your response as a caregiver can and will differ from that of your loved one or person with PD, and that that is ok.  Your emotions are valid, so are the emotions of your loved one.
• First step is to acknowledge that your response is normal
• Give words to them / articulate the words and feelings you are experiencing.  Share your emotions in a confident way and seek support when you need it

When we are thinking about the different emotions that can occur throughout the PD journey, and what the PD journey looks like, it’s important  to consider what losses are occurring. 

Grief:

• Where there is loss, there is usually grief
• Grief is a typical emotional response to loss
• In general, when we think about loss and grief, we tend to think about ordinary loss (loss of a physical presence of someone in your world/life)
• When it comes to PD, we should also consider other losses
  • Losses that occur without closure, unclear understanding of what the loss might entail
  • Losses can be experienced by both the person with PD and the caregiver 
  • ex. Loss of function, loss of being able to drive, difficulty doing certain activities that you and your care partner used to be able to like to do with that person, and can no longer do, loss of ability to communicate needs
  • ex. Loss  of identity – not feeling themselves
• Reaction to losses of changes can be similar to ordinary loss
  • 2 different kinds of stage models for grief
  • 5 stage, and 7 stages

5 stage model

• 5 stages are denial, anger, bargaining, depression, and acceptance
• Denial – normal to experience some denial in the beginning or throughout the journey
• Anger – anger at the disease itself, angry at loved one and then feel bad about it after 
• Depression – want to look for sins of depression to ensure it has been treated and accepted
• It is hard to get through the different stages to acceptance

The stages will look different from person to person, some people may experience all of themes one people only a few:

• There is no order in how you experience the stages
• Important to know things you can do to support yourself amid these changes
• If disease impacts day-to-day life, it is important to bring that up to your provider and try to seek some help from a professional (mental health, or a support network to help you with processing facts)
• It might help with grief to share your story with others, but the how/when/who is completely up to you
• We are care partners because it is a partnership

Fear people have when they think about sharing their experience

• Fear that the people they want to share it with don’t want to “deal” with it 
  • Might be the case for a select few, that you may not hear from the friends/members as much as you had before
  • For the majority, people are surprised how willing people are to lend a hand and help when there is a need
• Sharing experience may expand your support network
• Support network of other people with PD
• Allow yourself the space and time to process your own feelings
• Sometimes it takes time to process your own feelings in a support group/1 on 1/with a trusted friend or family member
• Try to not be too careful around your family members/people with Parkinson’s, keep an open line of communication to be able to express your concerns
  • Don’t need to sugar coat things – having an open line of communication is important
  • Should be able to openly express concerns
  • Being able to have open discussions while expressing positivity is crucial to navigating high’s/lows of PD journey
  • Person living with PD should have their own support network outside of you
• Don’t feel guilty about feeling emotions.  Try to not have the mentality of “I need to be strong for my partner and can’t express too many emotions”
• A strong care partner is one who takes care of themselves.  Being able to vocalize your feelings/emotions/own struggles will enable you to become a stronger care partner

Practical tips:

• Taking care of yourself is a good first step in becoming a strong care partner
• Don’t wait until your tank is low to seek help      
• Explore outlets now, rather than when you are stressed and overwhelmed
• Meditation and yoga can help with stress and anxiety
• Mindfulness exercises can be helpful if you don’t think you have enough time for yoga
  • Breathing
  • Be mindful of what you are grateful for
  • Think about next steps
• Find hobbies that you enjoy
• Find hobbies you can do with your loved ones but also take note to have “you time”
• Find someone to talk to that you trust, such as a support group, mental health provider, a friend