During a November webinar, psychiatrist Dr. Elizabeth Santos noted that care partners can and do experience feelings of great joy, deep love, increased affection, and happiness for successfully navigating the changing reality of Parkinson’s disease (PD). Care partners can also experience high levels of anxiety, sadness, depression, anger, frustration, and exhaustion while navigating this changing reality.  She emphasized that all of these feelings are normal and well within the normal boundaries of human existence.  Dr. Santos explained that caregivers taking care of their own mental health needs is just as important as taking care of their physical health.  We at Stanford Parkinson’s Community Outreach attended this webinar, and are sharing our notes.  (While the Parkinson’s Foundation hosted this webinar, there is nothing PD-specific here.)

The webinar was recorded, and is accessible on YouTube.

For more resources on caregiver stress, please see this Stanford Parkinson’s Community Outreach webpage.

In the question-and-answer session, Dr. Santos encouraged caregivers to attend caregiver-only support groups as they are “very helpful to understand how other caregivers cope with certain situations.”  If you live in Northern California, check out the Stanford Parkinson’s Community Outreach webpage on PD caregiver-only support groups.  Some of these groups are meeting in-person or virtually.

See my notes below for the webinar. 

Regards, 

– Sheela Sakariya

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“Mental health for care partners” – Webinar notes

Webinar Host:  Parkinson’s Foundation

Webinar Date:  November 5, 2021

Speaker:  Elizabeth J. Santos, MD, psychiatrist, Strong Memorial Hospital, NY 

Summary by:  Sheela Sakariya, Stanford Parkinson’s Community Outreach

Mental health for care partners

Care partners can have their own physical challenges as well as mental health issues.  There can be a significant cost to mental health for the care partners and taking care of mental health is extremely important.  Care partners are reluctant to ask for help with mental health as there is a stigma associated with mental health issues compared to asking for help when you break your arm or fall down.  Caring for a loved one with Parkinson’s disease (PD) can really be overwhelming and a huge responsibility – the feelings of drowning or not being able to keep up are completely normal.  It’s crucial to reach out for help with a mental health professional when feelings of anxiety, stress, sadness, anger, and frustration are taking over. 

Mental health includes our emotional, psychological and social well-being. It affects how we think, feel, and act. When it comes to living with PD ― in any stage ― or caring for a loved one with Parkinson’s, it can become difficult to manage and maintain your optimal mental health.

Tips for better mental health

As a caregiver, one feels so focused on the health of the loved one that it’s easy to forget about one’s own health.  Being a care partner is a full-time job and it is important to take care of your own mental health, too.  It’s also essential that care partners give themselves a pep talk that not every day can be a good day.  Not every hour can be a good hour — but you have gotten this far and you will do what is needed. 

Tips for mental health

• Learn to forgive yourself and tell yourself that you are doing your best
• Learn to let go of the guilt or rage that may be inside you as the caregiver 
• It’s also important to accept the situation of your loved one suffering from PD – not try to fix it because it’s not a disease that can be fixed
• Finding balance between your life as a caregiver and your loved ones needs who is living with PD so you can enjoy the good days
• Accept the not so good days for your loved one who is living with PD
• More added duties (cooking meals, administering medications, etc.) can build stress and calming yourself is important 
• As a caregiver, have a good companion/friend(s) you can speak to about the frustrations/stress which can really help calm you down 
• Seek help professionally or from a trusted friend if you need it. 

Remember to take breaks — utilize people in your life, or external resources, to allow you respite from caregiving.

Tips for better emotional health 

Some people with PD can experience delusions, hallucinations, and impulse control symptoms.  These symptoms can impact intimate partner relationships and add more stress to the caregivers mental health.  In turn, this causes a huge toll on the emotional well being of the care partner.  Tips for caregivers include:

• Do not fight with the delusions that your loved one is experiencing
• Do not try to argue with logic or rational
• Try to distract your loved one with other subjects or topics of interest
• Make sure you speak to the loved ones doctor about delusions/hallucinations to see if some medication might help resolve the issues
• Do not try to hide from your loved one
• Do not be ashamed or embarrassed by their behavior

Therapist for caregiver 

It’s quite common to have caregiver burnout.  Hence, it’s highly encouraged to find someone who has the knowledge about how to deal with the stress and mental anxiety related to caring for your loved one.  Talking with a counselor or therapist is a shortcut to figuring out how to deal with the stress and emotional conflict that come with being a caregiver.  Some people roll their eyes when they hear about therapy.  But don’t dismiss it so quickly.  Therapists or counselors are experts who help people deal with negative thinking, stress, depression, anxiety, major life changes, and more. 

Tips for speaking with therapist

• Be honest with your therapist
• Make sure you have the chemistry and trust with the therapist
• Try talking to your therapist 1-2 times in person/video call to see if he/she is the right fit
• Get recommendations from other caregivers to find a good therapist

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Question & Answer Session

Question:  Is it selfish of me to spend time away taking care of myself? 

Answer:  Absolutely not!  It’s a way to show that you care for your loved one.  When you regularly take care of yourself, you are better equipped to take care of your loved ones. As a caregiver, taking care of yourself first is equally important as taking care of others.  Stress builds up as there is a lot to do – it adds to the frustration.  It’s incredibly important to be present and available for yourself as you are available for your loved one.  Also, it’s great if your cared one encourages you to take a break to care for yourself. 

Question:  What if your cared one doesn’t understand that you as a caregiver need a break? 

Answer:  Use your doctor to help and support you in order to take care of yourself as a caregiver.  As a doctor, it’s my responsibility to take care of not just the cared one with PD but also the care partner who needs to take breaks. 

Question:  When your loved one with PD does not do the exercises or take medications, there is a huge amount of frustration for the caregiver.  What do you suggest in this type of situation?

Answer:  As a caregiver, you feel a lot of responsibility for your loved one and as part of your duties, it’s important to offer information, make suggestions, and provide good ideas.  However if you cannot convince your loved one to participate or cooperate, it’s important to take a step back and forgive yourself.  It’s crucial to not carry the guilt yourself as a caregiver because you still have to care/prepare yourself for a more challenging care process.  At some point, the caregiver has to accept the situation. 

Question:  Has your experience with support groups been beneficial? 

Answer:  Yes!  We have been involved with specific PD support groups and they have been very helpful to understand how other caregivers cope with certain situations.  

Also, I encourage joining spiritual groups that may help just talk about how you are doing as people, and how things can be better.  Having community support groups are incredibly helpful – there is also an emotional response that comes from the support groups which is very healthy.  The people in the support groups are not going to fix it for you, but they are there with you on a similar journey.

Question:  Can you have more than one support group? 

Answer:  Yes!  You can have tai chi groups, book club groups, and practicing faith groups.  They become more than just groups – they provide you the calm that is needed to go through your day to day life as a caregiver.