In October, Duke Health hosted a virtual session for caregivers on conscious self-care. The session featured geriatric social worker Bryan Godfrey, who reviewed how stressors a caregiver might face, and how self-care can prevent burnout.  Burnout is feeling like you no longer find pleasure in things you once found enjoyable, difficulty concentrating, difficulty sleeping, or weight changes.  According to the speaker, a high-stress environment combined with unrealistic expectations will lead to burn out.  In comparison, a change to a lower stressful environment combined with saying “no,” having realistic expectations, and practicing proactive self-care can lead to growth.  (There was nothing Parkinson’s-specific about this session.)

Stress has a powerful impact on your mind and body, and will influence your perceptions on life and how you cope with caregiving responsibilities.  Top chronic stressors in the present day are money, work, family, health, COVID, and politics.  Also, trauma may be a cause of stress because it overwhelms our ability to cope.  Being unable to take care of yourself while experiencing the stressors in your life will lead to burnout.  

The social worker speaker noted that the best way to prevent burnout is by practicing self-care.  Self-care is anything we do deliberately in order to take care of our mental, emotional, and physical health.  The speaker gave several examples of self-care including:

• Exercise:  try to exercise as it decreases tension, improves sleep, and reduces fatigue
• Sleep:  follow sleep hygiene, avoid naps
• Nutrition:  try to reduce sugar, caffeine, processed food
• Connecting with others:  enroll in a class, join a club, ask for specific kinds of help         

There may be self-care barriers, such as being too burned out to do anything, putting others first, and lack of time. We may also experience incorrect thoughts such as:

• We think self-care means being selfish
• We confuse “rescuing” with caring
• We are used to relationships based on neediness rather than love
• We forget or don’t realize that we teach people how to treat us.  Depending on how they react when we react
• We give but expect something in return:
  • In truth, it isn’t fair
  • If you choose to give, you shouldn’t expect anything in return
• We don’t realize our worth
• We think we can (or should) do it all.  We can’t, so we shouldn’t 

For more resources on caregiver stress, please see this Stanford Parkinson’s Community Outreach webpage, which has resources on practicing self-care (some of which are specific to PD caregivers) 

For caregiver blogs (to find out how caregivers cope and practice self-care), please see this Stanford Parkinson’s Community Outreach webpage.

For a recording of this session, please register on this Duke Health webpage.

And then:

• Click on “Sessions” tab at the bottom of the screen
• Then click on “Family Room”
• Then click on “Play”
• Finally, play the first video that comes up (titled “Caring for the Caregiver”)

See my notes below of the October 26th session. 

Regards, 

– Joëlle Kuehn

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“Conscious Self-care” [for the caregiver]- Session Notes  

Speaker:  Bryan Godfrey, LCSW, geriatric social worker, UNC Geriatrics Clinic

Session Host:  Duke Health

Session Date:  October 26th, 2021

Summary by Joëlle Kuehn, Stanford Parkinson’s Community Outreach 

Stress and self-care:

• High stress environment + ever-increasing demands + unrealistic expectations + no way to impact the broken system = burnout
• Stress has a powerful impact on your mind and body
• Change to lower stressful environment + learning how to say “no” + having realistic expectations + proactive self-care = growth
  • Make sure the realistic expectations are known to yourself and the people around you
  • Practice proactive self-care

What is stress:

• A reaction to demands
• Stress can have a powerful impact on your mind and body:
  • Stress hormones:
    • Adrenaline
    • Noradrenalin
    • Glucagon
    • Cortisol
  • Parasympathetic system:
    • Rest and digest system
    • Allows your body to recover, heal, rest
    • It is when we are not feeling stressed
    • When we perceive our situation to be stressful, the sympathetic system kicks in
  • Sympathetic system:
    • Fight or flight
    • Affects every aspect of our body as the hormones influence us
• We often mean chronic distress, but “stress” is much broader
• “It is the non-specific response of the body to any demand for change” – Hans Selye

Types of stress:

• Not all stress is created equally 
• Eustress (good stress) vs. distress (bad stress)
• For one person, a situation might cause panic, but for another who is accustomed to that, it might be in their comfort zone or something in between
• The amount of stress we have can be influenced by how we perceive the stress, and the amount
• Too little stress can lead to boredom and possibly apathy, too much stress can lead to feeling exhausted, overwhelmed and panicked
• Goal is not to eliminate stress, but find a area where you are top of your game, peak performance where your stress is present but manageable and motivates you to do better

Factors influencing perception:

• Optimism vs. pessimism
• Noticing the negative
• Snap judgments that stick
• Confirmation bias
• Assuming others are similar
• Expectations shape experience
• Focus on own experience.  Makes it more real to us, but makes it harder to understand the experiences of others 
• Multiple biases
• Mental illness

Stress isn’t always a bad thing, it can be fun, such as why we go on rollercoasters and watch scary movies.

Stress reaction:

• Mild acute stress reaction:
  • Mild stressor leads to small sympathetic stress reaction and then small parasympathetic rebound and then returns to normal
  • Acute stress reaction can feel good
  • We feel the peak/up and then return to the baseline
• Chronic stress reaction:
  • Moderate stress leads to strong sympathetic stress response, and an inadequate proprioception of completion, failure to completely discharge sympathetic arousal, diminished parasympathetic reaction, and a failure to recover to normal
  • Leads to an elevated sympathetic response at end and no return to baseline
  • If something that is mild happens again and again over time, our mind and body don’t have the energy to recover in time every time in the way we would like
  • Over time we don’t recover, we aren’t able to go back to our baseline 

Top chronic stressors:

• Money 
• Work
• Family
• Our health
• COVID
• Politics 

Core determinants of health:

• Gender.  Women are more likely than men to report having a lot of stress
• Health services
• Employment
• Education
• Physical environment
• Social support network
• Personal health practices and coping skills
• Social environment
• Healthy child development
• Biology and genetic endowment
• Culture
• Financials and social status

Trauma:

• Often undiagnosed and untreated
• Traumatic stress is a type that overwhelms our ability to cope
• When something triggers us or reminds us of that experience we can experience it again even though it isn’t there
• If you have gone through something like that, consider reaching out to a support that can help (therapist, pastor, family member, doctor)

Burnout:

• Feeling like:
  • You no longer find pleasure in things you once found enjoyable
  • Friends and family have expressed concerns about your well being
  • You’re getting negative feedback at work
  • You’re having problems with your spouse
  • You experience intense and recurrent feelings of anger, sadness, worry, or fear
  • You have difficulty concentrating
  • You have trouble sleeping, drastic weight changes, or other unexplained health problems
  • You use a substance to cope with, manage, or suppress painful feelings
•  If you notice the emotions are intense, recurrent, and unprompted, it is worth paying attention to
• Very individual

What is self-care?:

• Taking care of yourself
• Anything we do deliberately in order to take care of our mental, emotional, and physical health
• Common strategies for millennials:
  • Watch television
  • Nap / sleep
  • Eat
  • Drink alcohol
  • Smoke 
• Nothing wrong with these things, the problem is sometimes we overindulge them and use them to avoid things we’d rather not be doing
• Rather than overindulgence and avoiding, we try to self-monitor (how often are we using these and when) and practice things that care for us (self-care) rather than distract us

Self-care barriers:

• Too burned out to do anything:
  • It’s not necessarily about what you are doing, it is also about how long you have been doing it
  • You deserve credit for:
    • Knowing your limits
    • Knowing you are already beyond them
  • It’s ok to need help
  • Get the help you need:
    • Take care of physical health problems.  Make the doctors appointments you were putting off
    • Share your struggle with someone
    • Attend to mental health needs .  This includes stress!
    • Recognize what caused your burnout
    • Choose something different    
• Other people come first:
  • We feel guilty when we put ourselves first
  • Incorrect thoughts:
    • We think self-care means being selfish
    • We confuse “rescuing” with caring
    • We are used to relationships based on neediness rather than love
    • We forget or don’t realize that we teach people how to treat us.  Depending on how they react when we react
    • We give but expect something in return:
      • In truth, it isn’t fair
      • If you choose to give, you shouldn’t expect anything in return
    • We don’t realize our worth
    • We think we can (or should) do it all.  We can’t, so we shouldn’t
    • We don’t realize the harm we’re causing  
  • Need to pay attention and let the guilt go
  • If we start drowning, we might take them down with us
• Not enough time:
  • If your to-do list is “everything”, you can’t do everything 
  • Need to rank by urgency and importance
  • We all have limited time and energy:
    • Every choice and action will drain it
    • Low urgency, low importance: drop.  Honor that you cannot do it all
    • Low urgency, high importance: schedule for the future
    • High urgency, low importance: delegate
    • High urgency, high importance: do 
  • Not prioritizing your tasks overwhelms it  
  • How to improve and find time:
    • Notice where you are currently spending time.  Use a journal
    • Does this match your values?
    • Realize how long things really take
    • Accept you have limited energy
    • Remember, it is about priorities
• 1 in 5 Americans say they never engage in an activity to help relieve or manage stress

How to practice self-care:

• Exercise:
  • “If physical activity was a drug, it would be classified as a wonder drug” – academy of medical royal colleges
  • Twice as many deaths are due to inactivity than due to obesity on its own
  • According to the Anxiety and Depression Association of America, exercise is very effective at:
    • Decreasing tension
    • Reducing fatigue
    • Elevanting and stabilizing mood
    • Improving sleep
    • Improving self-esteem
    • Enhancing overall cognitive function
  • Exercise is helpful in feeling better
• Sleep:
  • Sleep hygiene is important
  • Start a relaxing sleep ritual
  • Avoid naps
  • Exercise daily
  • Lighting: as dark as possible
  • Temperature: 60-67 degrees
  • Treat allergies and any sleep cognitions (ex. apnea) with the help of a doctor
  • Avoid alcohol, nicotine, and big meals 
• Nutrition:
  • Sugar + caffeine + processed food = vulnerability
  • Half-life of caffeine is 4-6 hours
  • According to the World Health Organization (WHO), people should try to stay under 25 grams of sugar a day
  • Stress -> poor choices + overeating -> weight gain -> stress
• Connecting with others:
  • Social support is essential for maintaining physical and psychological health
  • Social support can regulate genetic and environmental vulnerabilities for mental illness
  • Connecting examples:
    • Enroll in an interesting class or seminar
    • Join a club, group, etc
    • Make time for those who matter
    • Ask for specific kinds of help:
      • Don’t assume people will volunteer to help even if you think they should
      • Need to ask, and ask for specifics
      • Better to ask than stew in resentment
    • Connect online

Mental health:

•  Instead of overestimating what you can do which leads to inevitable failure:  Try accurately estimating abilities and needs and adjust, leading to success and reinforcement
• Instead of comparing yourself to others and noticing the negative which leads to low self esteem:  Try comparing your present self to your past self and recognize growth and change
• Instead of trying to meet the expectations of others which leads to feeling weak, resentful and regretful:  Try trying to meet your own expectations to feel powerful and motivated
• Instead of caring only for others and trying to do it all which leads to burnout:  Try caring for yourself, setting limits, and asking for help which will lower stress

Mental health BALANCE acronym:

• B – balance is something you can achieve
• A – allow others to share the load
• L – let go of unrealistic expectations
• A – act upon your goals and priorities
• N – no is a word you can learn to say
• C – communicate to strengthen relationships
• E – expect and plan for the unexpected

Stress management tools:

• Therapy
• Spa
• Exercise
• Hobby
• Meditation:    
  • Mindfulness
  • Guided meditations (YouTube has them)
  • Progressive muscle relaxation
  • Paced breathing (2-3-4) or (4-7-8)
• Yoga
• Nature
• Time management
• Music