Anticipatory grief: The normal mourning that occurs when a patient or family is expecting a death. Anticipatory grief has many of the same symptoms as those experienced after a death has occurred. It includes all of the thinking, feeling, cultural, and social reactions to an expected death that are felt by the patient and family.

My mother passed away from ALS on September 14th, 2010. She was sick for years.

I remember watching her body wither away and betray her. Even now, there’s a knife in my heart.

We were best friends. When my dad left all we had was each other and my little sister. I called us the ‘Three Missy-teers.” We went to TGIFridays for Xmas dinner. I could tell her anything, and so could my friends. I trusted her and respected her completely. She was totally beautiful, inside and out. And I wanted so badly for her to be happy.

Then she met my step dad. They were pretty much inseparable and she was radiant. But it was short-lived. Shortly after their engagement she was diagnosed. The family was more in a “let’s be in denial and hope god heals her” sort of place, and she was getting married, and then pregnant, and I was jealous, and so confused. Web MD said ‘fatal,’ so why was my family carting her around to healing services and having random pastors come to the house? I didn’t get it. Still, I really don’t. But they were coping their way, and I was coping mine.

Captain Morgan and I became best friends. Razor blades, thinspiration, and laxatives soon joined the party. I hated what was happening. I hated that everyone was taking my mom to all these places, hiring people, showing her off. “Look how strong she is, how sweet she still is, her testimony is beautiful.” And I get it. And I know my mother wanted it all to mean something. Like maybe if she could bring someone to god, or help someone, somehow it would be worth it. The hospital stays and the loss of her modesty, her mobility, her speech.

Nothing will ever make it worth it, not to me. All I wanted to do was pick her up from that damned bed, away from everyone and protect her, fix her, something. I would have done anything for her- but there was nothing to do. And she was there, her mind was there, but she wasn’t my mom anymore. She was somewhere else, maybe thinking about how shitty everything was, maybe praying, maybe just waiting for it all to be over. I do not know how she did it for so long. I hadn’t heard her voice for years before she died.

I remember her falls. I remember bathing her and feeding her through a tube. I remember endless hospital trips, seeing Vivian (my baby sister) for the first time. I can clearly recall crying myself to sleep every night, hopeless, helpless, and filled with regret, stuck in a downward spiral that took me years to escape.

I remember the intervention. My family found the bottles and pills and razors under my sink in my bathroom. They weren’t hidden at all, and my mom knew I was cutting, but it still took forever. And my therapist, the one they took me in to see for an ’emergency session’ taught me two words. Two words that allowed me to name what was happening to me. Anticipatory Grief.

To me, it was like she was already gone. I was experiencing the loss of my mother as if it had already taken place, but also watching her suffer. The guilt I felt was overwhelming. I wasn’t there for my sister and I thought I was going to fail my senior year. My mother was dying and I was being terrible, sneaking out and drinking and dying my hair black. I moved out just before I graduated. I feel like I abandoned my sisters, my mother, but I also feel like I didn’t have a choice. ALS was not only killing my mother- it was killing me, too.

So I left. I visited all the time, still cried every night, but I began to really recover. I drank less, started eating actual food, gave up the laxatives and stopped cutting. It was rough for a while. It was a process.

I remember when she decided to stop eating and drinking. I will never forget the look in her eyes as she listened to my aunt explain it to me. She started to cry. In that moment, I think I saw her clearly, maybe for the first time in my life. She wasn’t just my mother, just a title or a symbol. She wasn’t ‘sweet, perfect Missy,’ she just was. She had no walls up, she wasn’t trying to prove anything, not trying to be something for someone, she was doing the right thing for herself. She was letting go. And I supported her 100%. I visited her when she was in a coma shortly after. I went to work, not knowing when she might go, and when she took a turn I got a phone call and a friend of the family came to pick me up.

I walked outside, it was sunny, really bright. And the friend, she looks at me. She says mom just died, she’s sorry. She says some other things I don’t remember. And it’s blunt, but it’s her style, and I appreciated it. After all the ‘god will heal her’ it was nice to just hear it straight. And what I remember is feeling lighter. Being grateful that mom wasn’t suffering anymore.

I got home and went into her bedroom, and there she was. She looked so small and pale, but finally, finally, at peace.

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