By Elaine K Sanchez
When my friend Emma told me that her husband had been diagnosed with Parkinson’s, my heart sank. We agreed to meet for breakfast. When we sat down, I put a large manilla envelope on the table. She said, “What’s that?”
When I explained that it was filled with wonderful information and resources for people who were living with Parkinson’s Disease, she pushed it away and said, “This is Ted’s disease. It’s not mine! I told him I was not going to take on the responsibility for managing it, and I was not going to allow his illness to impact my life.”
I slipped the envelope off the table and placed it on the floor next to my chair. I did not say what I was thinking, which was, “Good luck with that!”
Elizabeth Kubler Ross, who is a recognized expert on grief has identified five stages most people experience as they go through the process of grieving the death of a loved one. I believe when we are losing someone we love to a long-term progressive and degenerative disease, we experience preparatory grief. The stages for both types of grief are similar:
Obviously, in the beginning, Emma was in Stage 1––Denial. About a year later, we met for lunch and I asked her how things were going with Ted. She said they had been seeing a counselor at the center where Ted went for doctor visits and physical therapy. She told me she had lost it during a recent session.
She said, “I told the counselor that I was sick and tired of coming in here every week and talking about how Parkinson’s was affecting Ted. We always talk about how he’s feeling––how he’s coping. If we don’t start talking about how this disease is affecting me, my life, and my marriage, and what it feels like for me to be losing my husband one inch at a time, one day at a time, I’m not coming back!”
I think it’s safe to say that Emma had hit the second stage of grieving––Anger. It helps to understand that anger is a normal and predictable response to situations over which we have little or no control. As you already know, when you are caring for someone who has PD, there are countless situations and events over which you have no power, control, or authority. That means your opportunities to experience anger are practically limitless.
If you’re like most caregivers, you get angry with the disease and the impact it has on your loved one. You get mad about the abilities and skills they have lost and the way their disease has changed the life you thought you would be living at this point. You get angry with friends and relatives who don’t show up to help when you need them most. There are numerous other situations that make you furious, and then when you add to all of that to what I call the “3 F’s of Flipping Out,” which are Fear, Frustration, and Fatigue, it’s almost guaranteed that you are going to explode from time to time.
I am going to be presenting a series of Webinars for the Parkinson’s Resource Center. The first one, “Taming Your Anger Monster” will be on Saturday, September 8, at 10:00 a.m. We will be discussing the reasons caregivers get angry, and I will be sharing a 3-step process that will help you develop an “Attitude of Creative Indifference” toward the emotional stress of caring for someone who is aging, disabled, living with PD, or other progressive and degenerative diseases.
In the meantime, I’d like to give you just one piece of advice: Cut yourself a little slack. Having negative feelings doesn’t make you a bad person. My mother cared for my dad for six-and-a-half years after he suffered a debilitating stroke. During that time she wrote letters to me in which she expressed everything she was experiencing and exactly how she felt about it. She prayed every day that she would be a willing channel for God’s love and caring. She truly did want to always be loving, patient, and kind. Unfortunately, she had one major flaw––she was human. She was not a saint.
If you’d like to watch a short video about one situation that caused her to get really, really upset, please click on this link: Caregiver Anger and the 3 F’s of Flipping Out
I hope you will join us on September 8!
Elaine K Sanchez is the author of the unflinchingly honest and surprisingly funny book, “Letters from Madelyn, Chronicles of a Caregiver. She is co-founder of CaregiverHelp.com, a video-based support program for caregivers, and she frequently speaks at caregiving and healthcare conferences across the US.