a man with red glossy eyes from crying parkinson's disease and grief

My Experience with Anticipatory Grief

Last updated: January 2023

I have experienced anticipatory grief 2 times in my lifetime. The first was in 1974 when my 17 year-old daughter was first diagnosed, and later died, of spinal muscular atrophy. The second time was when I was diagnosed with Parkinson’s disease (PD) in 2020. My grief began with the loss of my ability to do things that I could do prior to my progressive illness.

Mg grief impacts my family

In addition to affecting myself, my anticipatory grief was also felt by my family. They knew that PD is progressive and that I will never be the same in our relationship. My relationships with these people changed from being socially connected to them assuming the additional role of caregiver. It led my family and me to experience personal loss.

Mourning my former life

As the anticipatory grief consumed me, I started to ruminate on feeling hopeless and helpless. I started to mourn my former life and questioned my own sense of hopelessness about the loss of my former identity. I still feel sad, afraid of the future, angry, and anxious. I feel guilty about having Parkinson’s. It has caused depression and the inability to function.

I was losing my independence and control over my life. I was battling my need to control my own life and to accept new experiences that I have little control over. Being an independent person, this diagnosis was like having an albatross around my neck.

Accepting the lack of control

When I realized that I was losing my independence and control, I knew I needed to accept my battle with the progressive, life-altering nature of PD. I had to accept the lack of control I had over my body and life, and at times, ask others for help. This was a hard thing for me to do.

I reflected on the uncertainty of my situation. I decided I had to concentrate on the things that I could control. I had to wholeheartedly be positive and open to change. However, the more I overthought my history, the more depressed I was becoming.

Thinking of the things my body could previously do was not helping me deal with what my body could do now. What was, was. I needed to be thinking about what was happening now. I had to deal with my current Parkinson’s disease issues. Anticipating what will be, may never happen.

Focusing on my mindset

Positive thoughts were in, negative thoughts were out. I had to accept that I did not cause my Parkinson’s disease and to get over the negative feelings by just going on with life. I had to get over the fact that I no longer was the person that I used to be. My silent mantra to myself was, "I hate you for putting me into this situation." I had to stop hating myself and start loving myself as a person.

I chose to try to improve my mood by exercising more and being around friends. I have come to realize that my wife's compassion, empathy, and caregiving abilities are limited. The progression of my symptoms will march on and debilitating changes will become more noticeable. My anticipatory grief continues.

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