In early March, the World Parkinson Coalition (WPC) hosted “Care Partners and Self-Care Throughout the Journey.” Social worker Amanda Janicke, occupational therapist Julia Wood, and Parkinson’s disease (PD) caregivers Angela Robb and Alan Ater each spoke for about 10 minutes, offering tips to caregivers of those with PD. 

This webinar is the first of four in the “WPC 2021 Care Partner Virtual Talk Series.”

The four speakers during this webinar offered these self-care tips to PD caregivers:

• Integrating self-care into your routine early and often helps you:
  • Stay connected to other sides of your identity outside of caregiving
  • Restores a sense of hopefulness about the future
  • Helps you create boundaries
  • Rebalances your life as much as possible, so you can feel more like yourself and resilient and ready for your next day. 
• If you feel like you won’t be able to do self-care because your loved one needs you during that time, it could be a sign you need extra help. 
• Create and utilize a “toolbox” to help you support your self-care needs. 
• Set small, achievable goals, celebrate your successes, and forgive your mistakes.
• Self-care does not have to consume your day; it can only take a few moments.
• Finally, it is important to address your own health and wellness needs before you can become the care partner you want to be and that your partner needs. 

You must register to view archived recordings of this webinar series or to attend the live stream of upcoming sessions, including:

• June 22, “Care Partnering in Parkinson’s: The Emotional Rollercoaster”
• September 28, “Communicating and Staying Connected with Parkinson’s in the Relationship,” and
• December (TBA), “Maintaining Closeness: Sexuality, Intimacy and the Ever-Changing Relationship”

Please see below for notes on the March 4th webinar.

Regards, 

– Joëlle Kuehn

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“Care Partners and Self-Care Throughout the Journey”

Webinar Host:  World Parkinson Coalition

Webinar Date:  March 4, 2021 

Summary by Joëlle Kuehn, Stanford Parkinson’s Community Outreach

Session 1: Self-care: what does it mean, and will it really help? 

Presented by Amanda Janicke, LCSW, social worker

Caregivers wear many caregiving hats and offer support on a wide variety of activities. It varies from person to person. They help with a variety of support on a daily and weekly basis: organizational tasks, and hands-on physical tasks and everything in between. 

Regardless of the type of support, caregiving comes with an emotional weight. There is a heaviness because it is important to you and has become a priority. 

You have a drive to help your loved one and support their independence and well-being, and health and safety. 

The things you do come with an emotional investment because you had a relationship with them outside of caregiving (significant other, parent, etc). Considering all the mental, physical, and emotional energy that is tied into caregiving, you can see how much it requires of a person. When your loved one has Parkinson’s disease (PD), it’s not just one whirlwind weekend and then you’re done where after you can resume normal life. 

There is now a new normal and can feel like there is a third person in your relationship (you, your significant other/parent, and their PD). 

Sometimes the addition of PD can be smooth, but it can also feel like PD or the worries about PD are taking over room in the relationship and your life. If it feels like it’s taking over, it means things are out of balance. 

This could be because there has been a string of challenges lately that require a lot of you, or on a daily basis you feel a lot of pressure to do a lot because they need a lot. Even if your loved one is doing fine, you also add the emotional factors such as worries about their well-being, and how things have changed since the diagnosis. 

When someone we care about needs a lot from us or we worry about them, our own needs can become hard to recognize or can be seen as less important. When that continues to happen day-in and day-out, the other parts to your identity can get lost and your own needs don’t end up getting met, which can lead you to become drained, resentful, depleted. This can cause you to lose sight of what you find rewarding about caregiving to begin with. Due to this, self-care will help you and the one you are caring for. Have compassion for yourself.

Another benefit of self-care is that it helps you become a more resilient care partner.  Regular self-care can help you build up the reserves of energy needed in tough times. You are supporting the future you which will help your loved one with PD. 

Session 2: ‘Yes you really can weave self-care into your life: Start with self-compassion” 

Presented by Julie Wood, MOT, OTRL, occupational therapist

Even when days are busy, you can weave self-care into your life.

Identifying barriers: barriers for all of us for participation:

• Some of them can be real, and some can be perceived
• We all walk different paths and have different challenges/barriers
• Some we have no control over (motor fluctuations, lack of sleep)
• Some we can unintentionally impose on ourselves (negative beliefs and negative self-talks)
• Taking the time to identify what your barriers to self-care is an important first step
  • Make a list of the reasons why you feel you can’t take time for yourself
  • Not enough hours, others needs are more important than yours
  • Take time to analyze what are facts and what are misconceptions

To foster self-care we have to start with self-compassion:

• Acknowledge our own feelings, hurts, needs
• Giving same care to self that we give to others
• Acknowledging our limitations (we cannot do everything alone)
• In order to acknowledge feelings, we have to become mindful and aware of them 
• How to be mindful:
  • Step 1: Think about a recent event where you had a negative moment and it was a struggle (you weren’t happy with the situation, or the outcome) 
  • Step 2: Acknowledge it, think about how it felt. Name what you are feeling
  • Step 3: Have a moment of self-compassion
  • Step 4: Always think of having a moment where we are kind to ourselves.  Biggest moment of self-compassion is self-kindness
  • Step 5: Think of yourself as you would a dear friend: if you had a friend who went through the same suffering you did, what would you say to them? How would you view them? Give yourself the same compassion and kindness you would give them
  • Step 6: Know it’s ok to acknowledge your feelings
  • Step 7: Give yourself a moment to feel your body, what are you feeling?
• Self-care strategies are uniquely personal to you and your values

Have a toolbox for self-care: 

• Use daily occurrences or annoyances as a reminder for self-care.  Take deep breaths, think of what you are grateful for
• Pair self-care with something you do every day (before a meal, when taking medication)
• Have some activities you can enjoy in any given moment.  Puzzles, affirmation cards
• Have fun, be playful: bubbles, music, dance, have a moment of creativity

Session 3 – Part 1: How to realistically include self-care in your life when there is so much going on 

Presented by Angela Robb, PD caregiver

Self-care is a journey, and everyone’s journey is different.

I crafted my toolbox over time.

Thoughts:

• You have to have compassion for yourself and make yourself a priority
• Investing in yourself is not selfish
• I can recommend mindfulness 
• Building your self-care plan is a process
• I tried hard to forgive myself 
• I have to communicate my boundaries in the pandemic, especially being in close quarters
• Take time for myself
• Be ok if you have to abandon a self-care tool to do something else – flexibility is important
• Planning for the long term is important – plan for doctors appointments, legal or financial preparations
• Know you are not alone

Session 3 – Part 2: How to realistically include self-care in your life when there is so much going on 

Presented by Alan Ater, PD caregiver

This journey is not a sprint, it’s a marathon 

Thoughts:

• I learned that I needed to take care of my own demons first if I wanted to become the husband, father, care partner that I wanted to be
• Try to look at the positives – my children are very kind because they learned empathy growing up with a mother who has PD
• It has taught us to slow down and accept what PD is going to give us in our lives
• Learn how to set limits and say no

Questions & Answers:

Question: I have been struggling with self-care during the pandemic. Do you have any suggestions?

Answer (by Julie): Look at what were the self-care things you were doing for and try to find another resource to do that. For example, if it is getting coffee with a friend, try zooming with them.  

Question: My spouse is so anxious when I leave for self-care. It makes me feel guilty and hampers my self-care motivation. Any suggestions?

Answer (by Angela): Utilize communication tools, let them know they can call or text you. Build their confidence. You can also have someone come over and socially distance and take care of them or keep them company. 

Question: Any tips on guilt?

Answer (by Angela): Come back to the foundation of understanding that self-care is important for the short and long-run. See why you’re feeling that particular way and try to reinforce with your self-compassion and self-love to take care of yourself. 

Question: If there is one thing you wished you would have known at the beginning as a care partner, what would it be?

Answer (by Alan): It would’ve been great to realize that everybody’s journey with PD is different.

Question: It’s very scary for me to be so depended on.  How can I address this? 

Answer (by Amanda): Try to think about where there is room to spread it around a little bit. Know you can’t do everything. Build a circle of people who can help. Think “I get to…”, rather than “I have to…”, or “I need to…” when it comes to caregiving duties. 

Answer (by Angela): Build your village and your care team. Think about if there are family, friends, medical providers who can help you. Don’t be afraid to accept help. This can also help to increase your social circle. Think about what you are needed for, then see if you can distribute these things to other people. 

Answer (by Alan): Try to find ways to remove duties (take out the lawn so you don’t have to mow it) and make your lives as easy as you can.

Question: What are your favorite go-to resources?

 Answer (by Amanda): The Parkinson Foundation has a Caring and Coping book. Consider who you are outside of your PD caregiving role. Think about what feeds your soul. 

Answer (by Julie): I love Insight Timer.  It’s a meditation, yoga, mindfulness app. The National Caregiver Alliance also has great resources. 

Question: My husband is the polar opposite of what he used to be in many ways. Tips for incorporating patience when it’s really hard.

Answer (by Angela): Take deep breaths before you respond. It’s a reset. Take a break if you need it.

Answer (by Alan): I equate patience with stress, so try to make conscious decisions to reduce stress. Acknowledge if you need help.

Question: My self-care is getting away by taking long naps.  How do I better this pattern?

Answer (by Amanda): Talk with your doctor, something else might be going on (low on certain vitamins, depression). Acknowledge what is going on that is pushing you to want to escape.