Parkinson's Caregiver Burnout: Handling Grief, Anxiety, and Depression

One of the biggest myths about grief is that it only follows a death. The truth is that grief can show up long before death arrives and can often be triggered the moment a Parkinson’s diagnosis is delivered.

This concept, called Anticipatory Grief, can affect everyone - the person diagnosed, their spouse, their children, their close friends - yet often goes unrecognized and rarely discussed.

Feelings of sadness, anger, forgetfulness, isolation, and depression are just a few of the indicators that you may be experiencing grief.

While these feelings are a normal reaction to such a significant life event, it doesn’t mean you have to “just get over it” or suffer in silence.

Today’s interview is with Debbie Heinrich, who serves on the Board of Directors at Companions on a Journey.

In this interview, we cover the following:

  • What are the symptoms of grief?

  • Why does grief happen after a Parkinson’s diagnosis?

  • How does grief contribute to Caregiver burnout?

  • What are healthy ways to approach sadness, grief, and anxiety?

  • How can someone handle the tougher sides of grief, like feelings of anger and depression?

  • How can you come together with your affected partner to move forward together?

  • How to recognize shame and its impact on grief

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What are the symptoms of grief?

Grief is the reaction that we have to any loss.

Many times people only think about grief when they're thinking about someone dying, but every kind of loss we have throughout our lives, we grieve.

If we're dealing with something like an advanced progressive illness, there are multiple losses that happen along the way and we are going to be grieving those losses throughout that process.

The physical, social, emotional, and spiritual symptoms of grief (

Grief will manifest itself in many different ways:

We have the physical side, where we can feel that stress inside. We can have an upset stomach, get headaches or muscle tension, or it can stress our bodies to the point of illness.

Then there is the emotional side of that where we can't concentrate, want to cry, get angry, or get very sad.

Then there’s a social side of grief where we can isolate ourselves, feel distracted easily or like we can't accomplish things that we normally do.

Grief isn’t just a feeling of sadness.

Feelings of overwhelm, being really tired, or wanting to bust out and cry or explode at any moment may get misconstrued as “caregiver burnout”, while in reality, you may be grieving.

Why does grief happen after a Parkinson’s diagnosis?

Dr. Eric Casell explained this as that humans, we are made up of many different aspects. If something happens to the body, there is a loss and we suffer. We have relationships and if someone is ill, it changes how we interact and can cause feelings of loss. If there are progressive losses in a disease, our relationships suffer. All the roles in our lives suffer when there is a progressive loss because of illness.

How does grief contribute to Caregiver burnout?

While you may be stressed out and running on fumes from the demands of being a caregiver, these symptoms can potentially overlap with underlying grief that hasn't been addressed.

Parkinson's Caregiver Anxiety - Companions on a Journey - Sheila Munafo-Kanoza

So how do people know if they're grieving?

Whenever we feel a little off kilter, we need to assess ourselves. Ask yourself: What's going on on here? Am I really tired or is it something else? What's at the bottom of this feeling?

If we walk it backwards, many times it will lead us to identifying that we may be grieving the loss of some aspect of who we were.

Grief contributes to caregiver burnout when we do not acknowledge the grief or the loss. It's when we shove the feelings down all the way like "I'm not going to feel that right now."

The first stage of grief is acknowledging that a loss has happened, and with death it's a pretty clear loss. With slowly losing function or needing more and more assistance, we have to acknowledge the losses happening there and allow ourselves to experience the pain of that loss.

We're not really good at allowing ourselves to experience the pain of loss, and that's where caregiver burnout can happen.

What are healthy ways to approach sadness, grief, and anxiety?

Even if you're on both sides of the equation [patient or caregiver], there are activities or processes that you can go through. It seems like journaling might be a good way to move through the acknowledgment.

Parkinson's caregiver support group

What works well for one person may not work well for another, but being part of a support group is really helpful for a multitude of reasons. One is that you are able to connect with somebody who is going through similar kinds of things and that they understand you in a way that other people don't.

If a group setting isn’t for you, try and identify and confide in a nonjudgmental person. It can be a family member or clergy, or some other resource in your community, or your best friend from college, but just try to identify that person who is able to just listen to you.

The other thing that is certainly helpful is to get physical. So if it's just getting outside and walking for 10 minutes it can just help clear your mind or help you be able to process things.

Nobody can be a good caretaker without taking care of themselves, so you need to eat well and we need to get adequate sleep. Take time to take care of you as a caregiver. Make a list of the things you need.

How can someone handle the tougher sides of grief, like feelings of anger and depression?

If you have that sad, blue mood every day for two weeks, you don't see any hope, you don't have enjoyment in anything, you don't feel like eating, you're not sleeping well: you really do need to get clinical help for that kind of depression.

Parkinson's caregiver burnout - dealing with anger and depression

Without that profound depression, we can still have days where we're down and depressed. There were times that I would be in the car and I would just pull over to the side of the road and I would scream. I felt like I needed to get that out somewhere and I didn't want to scream in front of my husband, so I would scream in the car where nobody could hear me. I might look a little crazy but it's good to get that out.

One woman we counseled found that throwing hatchets at targets was the best stress relief she's ever had. It's physical, and it helps work through those kinds of emotion. Throwing an egg against a fence, something with intensity that's also safe for others.

Some of my clients have a time-out card, an actual sign, that they use to get ten minutes of time to themselves to get their own space and do what they need to do, whether that’s cry, journal, meditate, or go for a walk. Creating that space and distance can help you from taking out your emotions unfairly on your loved one.

How can you come together with your affected partner to move forward together?

Parkinson's caregiver burnout - giving thanks

Be able to say to each other, "Thank you. Thank you for what you're doing. Thank you for what you have given me." To be able to say, “I love you” daily. To be able to say, “I forgive you for anything that may may have happened in the past or that happened today that upset me”.

So it's: Thank You. I love you. I’m sorry. I forgive you.

If we can do that in all of our relationships every day, then we're going to have less shame and guilt in our lives.

Special Note: Shame’s Impact on Grief

When we talk about common feelings that people can have with grief, we often hear about shame and guilt.

Caregivers may think, "I haven't done enough or I should have done more”, or , “I should have identified this earlier.”

It this is you, those thoughts are a good sign that it’s time to step back and say, "In reality, what can I do differently or could I have done differently?"

Let's remind ourselves that we do the best we can with the information and resources we have in the moment.

Let's congratulate ourselves on the good job that we've done, because it is hard work. Focus on the abundance of things you’ve done for the person you love.

Download Invigorate’s free Parkinson’s Caregiver Kit

We’ve gathered the most helpful tools, strategies, and resources for the Parkinson’s caregiver into one easy-to-digest and incredibly helpful eGuide. You’ll learn the tried-and-true go-to tips from experts, people with Parkinson’s, and carepartners so you don’t have to reinvent the wheel.

Watch the Interview with Debbie Heinrich