Care Partner Town Hall: Self-Care @ Home – Webinar Notes

Care Partner Town Hall: Self-Care @ Home – Webinar Notes

On November 18th, the Parkinson’s Foundation held a Care Partner Town Hall on the topic of Self-Care @ Home.  Two social workers from the Parkinson’s Foundation took turns sharing information about self-care challenges caregivers face, tips for celebrating the holidays safely during the covid pandemic, self-care tips for a less stressful holiday, and their favorite web pages with self-care resources, including a caregiver assessment tool. 


You can watch this webinar here.

I love this concept from the webinar

  • You may not be able to envision how you will fit any of these suggestions into your life.  But, remember, it is called ‘practicing’ self-care because it really does take practice!  You will need to try different stress-relieving actions and fit them in at different times before you find the right mix that works for you.

Having done the caregiver assessment, you will see what aspects of caregiving you find most stressful, then focus efforts to relieve stress in those specific areas by trying some of the stress-relieving suggestions in this webinar and other sources.  

In fact, the Stanford Parkinson’s Community Outreach Program has a web page packed with tips for managing caregiver stress here.

Happy, minimally stressful holidays, everyone!!!

And now, on to my notes…

– Denise


Care Partner Town Hall: Self-Care @ Home

The Parkinson’s Foundation, November 18, 2020

Speakers: Anna Hedges, MSW, and Amanda Janicke, LCSW

Amanda kicked off the town hall with a poll question asking attendees how they are doing with their current self-care. 

Response options were:

I’ve successfully implemented a self-care routine.20%
I could do better with practicing self-care.73%
Self-care? What is that?7%

Caregivers have multiple responsibilities supporting, advocating for and caring for their loved one with Parkinson’s (PD).  COVID-19 introduced new responsibilities, not to mention the holidays on top of everything else.  Holidays can be chaotic when we’re not in a pandemic.  With all that going on, it can be difficult to fit your own self-care into all these demands.  We hope you will get some tips today for how to fit self-care into your days.

Before we do that, let’s talk about why self-care is important.  We know caring for your loved one with PD is your main priority and that you have other responsibilities in your life that demand your time and attention, preventing you from prioritizing self-care.  Over time the daily focus on making sure you attend to all your responsibilities can wear you down, allowing you to become sick.  When you get run down you are unable to properly attend to any of your responsibilities well.  So, attending to your own health ensures you continue to be available to those who need you.  That means caring for your mind, body, and soul every day in hopes that it will keep you healthy and prevent burnout.

Of course, that means balancing the time it takes to attend to all your responsibilities and self-care.  That may mean scheduling time for yourself, using a timer, carving out just 5 few minutes a day to begin with, or planning ahead to have more time for yourself.  You may need to be flexible and really listen to yourself (mind, body, heart) to know when you need to take time to recharge.  It is a process and making the time for self-care will look different from person to person.  You may have to try a few different tactics before you find a method to carve out time for yourself in your caregiving situation.

The Parkinson’s Foundation is calling family caregivers during the pandemic, “Heros at Home.”  Being a hero at home doesn’t mean you can’t take a break.  By contrast, it means you have earned some time to do the things you love to do.  Taking that time to replenish, refuel, and recharge allows you to continue doing the work of a hero.  Research shows self-care recharging can make a positive impact on the person you care for.

Anna took over to talk about navigating the holidays during this time of COVID-19, while keeping self-care needs in mind.

Because of COVID-19 things can’t be the same as they were in past years.  To accept that we need to grieve the loss of those things we will miss.  So, take some time to acknowledge the sadness, disappointment, or anger you and your family feel.  Don’t avoid your emotions.  Acknowledge that it’s tough.  We must all make hard decisions about not spending time with family this holiday season.  If you’re having a hard time dealing with your feelings, try journaling about it or set up an appointment with a counselor.  

Some tips for celebrating the holidays safely:

  • Talk with your family about what new traditions to consider when old ones are not feasible.  
  • Evaluate you and your loved one’s risks.  
    • People with PD who have COVID have a 30% higher chance of dying than someone the same age who does not have PD.
  • If your family would be traveling to visit you from part of the country with high COVID rates, or if you would be traveling to visit family from a place with high COVID rates, talk with family about not traveling this year at all and ask that they stay home.
  • You might ask local friends or family to join your COVID bubble if everyone has been quarantining safely before social gatherings.
  • For safer holiday gatherings with those not in your COVID bubble, meet outside with masks and social distancing.
  • Send flowers, cards, sweet treats, and call on the phone loved ones in a care facility closed to visitors due to COVID.
    • Scientists don’t think sharing baked goods is a vector for the virus.
  • Schedule a Zoom gathering or meal with loved ones with whom you cannot gather.
  • If you must have a holiday celebration
    • Gather outside with social distancing
    • Open windows for ventilation when meeting inside
    • Hugs, but no kisses
    • Wear masks when not eating and drinking
    • Wash hands frequently
    • Make the gathering short
    • If any invitees have a fever or are feeling unwell, they should not attend
  • Dr. Michael Okin’s 3 C’s Rule
    • Cover your face
      • Masks should be 2-3 layers thick
      • No bandanas or gaiters as these are not as effective at containing aerosolized particles
    • Control your environment
      • Outside visits 6′ apart are less likely to transmit the virus than inside visits
    • Contain your environment
      • Gatherings should be less than 10 people, preferably outside with masks 6′ apart

Self-care tips for less stressful holidays:

  • Find out now who on your loved one’s medical team to call in the event of an emergency through the holidays
    • Many medical staff are doing telemedicine appointments from home, so their clinic hours have changed
    • Medical staff are also on vacation during the holidays.
  • Consider arranging help with caregiving duties early.
    • Try to envision when and where you may be stretched thin.
    • Arranging help may mean
      • Delegating tasks to family or friends
      • Hiring an in-home care service (if you are comfortable with this during COVID)
  • Arrange for additional counseling appointments for extra emotional support
    • If you have been debating about counseling but don’t know where to find someone
      • Ask your doctor for a referral
      • Contact the Parkinson’s Foundation Help Line 800-4PD-INFO (800-473-4636) for ideas about finding a counselor in your area
  • Prioritize holiday traditions that mean the most to you and just do those, so you don’t become overwhelmed
    • Give yourself permission to do less
  • Other people’s moods are not your responsibility
    • If you find yourself getting caught up in family drama, or being brought down by someone’s attitude, create some space between you and them.
      • They are allowed to feel the way they feel, but you’re also allowed to set boundaries and ask for what you need.
  • Practice gratitude
    • It may take some practice to find things that are going well or to give yourself credit for all you do
    • Over time, practicing gratitude can shift your mindset toward the positive
    • Say kind words to yourself daily, don’t wait for others to appreciate all you do
  • Instead of cooking, order premade meals from restaurants, the grocery store, or ask others to cook for you – unless you love to cook
    • If you love to cook, self-care means prioritizing what is most important to you – so cook!
    • If not, ask a few people to bring you meals on different days of the week so you have most meals covered
  • Do your shopping early online instead of in person.  This is less exhausting and stressful.
    • If you are not up to shopping or can’t afford to send gifts, explain this to your family and friends.  You’ll be surprised how understanding they will be.
  • Tell family and friends that rather than a physical gift this year you would like caregiving help.  That may be your friend/family member 
    • coming over to help out with a specific task or chore (yard work, bring groceries, computer help, etc.)
    • keeping your loved one company on the phone or facetime/Zoom so you have some time to yourself
    • making a financial contribution towards paying for in-home care for your loved one, thereby easing your caregiving burden.
  • Think about what makes you feel recharged and how to make that a reality.  That may mean
    • carving out time to just do nothing and not feel bad about it
    • set aside time to connect with an old friend
    • join a support group as an outlet for your frustrations over caregiving and help from those who have faced similar challenges
    • take time away from Parkinson’s altogether to reconnect with parts of yourself you haven’t seen in awhile
      • paint, dance, play a sport, have a spa day, hang with a friend, take a class, book club, hobby group, etc.
  • Attend to your spiritual needs.  Consider
    • spending some time in nature
    • call your spiritual leader for more support or prayer
    • meditate
    • listen to music
  • Consider practicing relaxing imagery or progressive muscle relaxing techniques, which can bring peace and comfort.
  • Set aside time for exercise
    • combats depression
    • energizes the mind and body
  • Make a list of to-dos and put self-care on the list
    • make a list of to-don’ts to keep you from doing those things you know stress you out
  • Mix small pleasures throughout your typical daily activities to give you an energy and mood boost
    • light a scented candle (buy a cinnamon broom during the holiday for a yummy scent)
    • make a point to play music you love when doing chores

You may not be able to envision how you will fit any of these suggestions into your life.  Remember, it is called ‘practicing’ self-care because it really does take practice!  The goal is for you to consider what works for you and what will bring you peace and comfort.  Some of the suggestions made today ask you to carefully weigh two competing risks, like the risk of caregiver burnout vs. letting help in during a pandemic.  If you’re not sure how to navigate those risks, share your concerns with those on your care team whom you trust, like a nurse or support group leader, so you have a sounding board to help you think through your situation.

Parkinson’s Foundation Favorite Self-Care Resources:

  • Parkinson’s Foundation – Caregiver Self-Assessment Tool
    • Download PDF
      • complete this to see if you are at risk for caregiver burnout
  • CDC COVID Data Tracker
    • COVID tracker
      • Select your state and click on your county to find out what the COVID-19 rate is in your county
      • This will help you to determine whether travel, social gatherings, or hiring in-home help is a good idea
  • Parkinson’s Foundation – Help Line 800-4PD-INFO (800-473-4636) 
    • Hours – Mon-Fri, 9a-8p (EST)
    • English and Spanish
    • Help via email
  • Parkinson’s Foundation – Veteran Care Partner Resources
    • Website
      • Veteran’s Administration Caregiver Support Line 855-260-3274
  • Parkinson’s Foundation – Caregiver Resources List
    • Website
      • Includes information and resources related to
        • Aging (financial, transportation, meals, and other assistance for those over 65)
        • Caregiving (national organizations with information and programs to assist caregivers)
        • Healthcare professionals (help finding a geriatric care manager, social worker, therapist, visiting nurses, physical therapist, speech-language pathologist, or LSVT-certified clinician)
        • Government programs
        • Medication assistance
        • Financial, legal and insurance issues
        • Activities of daily living
        • End-of-life planning
  • Parkinson’s Foundation – Caring and Coping Book
    • Website
      • Available to download or order by mail (free)
  • Parkinson’s Foundation – Pdconversations.org – Caregiving Discussion Group
    • A place to ask your Parkinson’s questions, connect with others living with the disease and be part of a network of support
  • Parkinson’s Foundation – PD Health @ Home
    • Website
      • Virtual education and wellness programs, including:
        • Mindfulness Mondays – guided relaxation techniques to boost brain power and reduce stress
          • A great way to practice self-care!
        • Wellness Wednesdays – expert guided webinars on various Parkinson’s topics
        • Fitness Fridays – PD-tailored fitness videos with a different focus every week
      • Everything is archived so you can go back to watch past events.
      • See all upcoming programs from this page, as well
  • Parkinson’s Foundation – My PD Story
    • Website
      • Many stories are very uplifting
      • Write your own story!  Submit it to be on this page for others to read
  • AARP Community Connections
    • aarpcommunityconnections.org
      • Find both formal and informal groups offering help to seniors
      • Groups are NOT vetted by either the Parkinson’s Foundation or AARP!  Be cautions.  Be COVID safe.
        • Example: In the Miami area most groups are associated with universities, so many participants are students