Grief of Parkinson’s Disease

Developing an Attitude of Creative Indifference
Step 1: AWARENESS

caregiver grieving the impact of Parkinson's DiseaseLast night I spoke about coping with the grief of Parkinson’s Disease at a Caregivers’ Conference hosted by the OHSU Brain Institute , and sponsored in part by Parkinson’s Resources of Oregon.

Depression and grief are hard topics, and I didn’t sugar coat any of the feelings that caregivers experience as they go through the process of gradually losing someone they love to Parkinson’s Disease. There were lots of tears in the audience as I described my friend Emma’s struggle to come to terms with the impact her husband’s Parkinson’s is having on her life.

One woman stated that after caring for her husband for 20 years, she stopped calling it Parkinson’s and started calling it “Infinite Disease”, because there is no end to the number of ways it can break your heart.

When you are caring for someone with Parkinson’s, Alzheimer’s or any other long-term disease, it’s not at all unusual for friends and family members to inquire about the condition of your loved one and never even think to ask about what’s happening in your mind, heart or body.

As a caregiver, you have to learn that you cannot count on anyone who hasn’t done what you’re doing to recognize or understand how incredibly difficult this journey can be. That’s why developing a plan for self-care is so critically important.

Over the course of the next few days I’m going to be writing about the process of Developing an Attitude of Creative Indifference toward the people, situations and events that are causing you the greatest amount of stress.

If this is new information for you, I hope you’ll give it a try. If you’ve done it before, I hope you’ll do it again. I believe this three-step process is something we need to be doing constantly in order to manage our feelings and keep ourselves afloat as we adjust to the ongoing changes and steady decline of someone we love.

The three steps are:

1. Aware
2. Accept
3. Act

Becoming AWARE of the specific issues that are causing you the greatest amount of stress is the first step. Caregivers are constantly dealing with circumstances that generate feelings of anger, fear, frustration, guilt, anxiety, depression and grief.

In order to stop these feelings from overwhelming you during the day and waking you up in the middle of the night, make a list. Write down the specific things that are upsetting you. Don’t make judgments about whether you should or shouldn’t be upset. Don’t worry about how anyone else will think or react. Be honest and don’t hold back.

The form doesn’t matter. It’s the process of getting it on paper that’s important. There’s something magical and amazingly cathartic about getting swirling thoughts out of your head and down on paper. The clarity that it brings doesn’t make the problem go away, but it can help you make decisions on how you want to manage it.

So today, grab a pen and a piece of paper, or open a new document on your computer. Disengage your emotional monitor and write down the situations, people and events that are upsetting you right now. Name them. Describe them in detail. And then if you’re afraid of how others might react if they read your list, hide it. Tuck it away someplace safe until you’re ready to burn or shred it.

Tomorrow I’ll cover Acceptance, which is the second step in developing an “Attitude of Creative Indifference”.

For more information on coping with caregiver grief, click on this link: Understanding Caregiver Grief