Talk about Mad!

Old womanExpressing anger and grief is something many caregivers are reluctant to do. I was reminded of this a couple of days ago when I had breakfast with my dear friend Emma, who is just coming to grips with the fact that her husband has Parkinson’s Disease.

For the last few years Emma has put on a happy face and talked about how well she and Tom are doing. Last spring I told her about the annual Oregon State Parkinson’s Conference and encouraged her to attend. I tried to share a tremendously informative and helpful booklet about the disease, and I gave her the link to my website, She politely thanked me, but it was clear that she didn’t want to know anything about the disease and she had no interest in learning about being a caregiver.

A few months ago Emma and Ted started seeing a counselor as a part of his treatment plan. Emma sat patiently through each session while the therapist and Tom discussed the impact the disease was having on him.

Finally last week, she lost it. She exclaimed, “I am sick and tired of coming in here every week and talking only about Tom. I am losing my husband bit by bit. I hate his Parkinson’s! I hate what it’s doing to him, and I hate what it’s doing to me! Nobody seems to notice or care that he’s not the only one affected by this disease. If we’re not going to address how I feel, I’m not coming back! I’m done!”

When Emma told me what had happened, I said, “Good for you! Thank goodness you finally acknowledged it and said it out loud!”

Emma didn’t know about the five stages of grief, which are:

1. Denial and Isolation
2. Anger
3. Bargaining
4. Depression
5. Acceptance

Unless you have experienced losing a love one over an extended period of time, you can’t understand that the grief process doesn’t begin when that person dies.

There’s nothing that will stop the progression of the disease, but learning about it will help them recognize and manage the changes as they occur. Most importantly, Emma has finally acknowledged her feelings. She’s stopped pretending that Parkinson’s isn’t going to change their lives. She is no longer denying that she’s going to be just fine, no matter what happens to Tom.

She’s not fine. She is mourning the day-to-day disappearance of a man she has loved, respected and admired for nearly 50 years. She’s grieving the loss of the life they’ve shared, and she’s accepted that she’s frightened about what lies ahead. She’s sad and she’s mad. The only good thing about this is that she is finally expressing anger and grief instead of keeping it bottled up inside.

It’s important to know that having negative feelings doesn’t make you a bad person. Emma isn’t being selfish; she’s hurting and she has finally found the courage to acknowledge it. That’s the first step of a long, difficult journey. At least now she knows there is help available and that she won’t have to do it alone.

For more information on Parkinson’s Disease, chech out: Michael J. Fox Foundation for Parkinson’s Research

National Parkinson Foundation

For more information on Preparatory Grief, check out my video: Grief: Is There No End to This?