In a previous post, I mentioned that I was listening to a podcast called All There Is with Anderson Cooper – the subject matter relates to exploring loss and grief. Recently, I listened to an episode that dealt with anticipatory grief (episode 5, recorded on October 12, 2022). I had never heard the term anticipatory grief before. But, I identified with the discussion due to the issues I am having with my Mom.
What is Anticipatory Grief
Anticipatory grief is an emotional process that occurs before an expected loss, typically associated with the impending death of a loved one. Unlike the more immediate and intense grief experienced after a loss, anticipatory grief begins before the actual event, allowing individuals to grapple with the impending changes and emotional impact. During this period, people may experience a range of emotions, including sadness, anxiety, guilt, and even relief, as they confront the impending loss and start to mentally prepare for life without their loved one.
In episode 5, of All There Is, Anderson Cooper interviewed filmmaker Kirsten Johnson who lost her mom to Alzheimer in 2007 and was struggling to deal with her father who has dementia. Johnson told Cooper:
“I didn’t know the term anticipatory grief before my mom got Alzheimer’s, but it’s this this crazy feeling of imagining the person dead while they’re in front of you and then all the feelings that that brings. There’s a lot of guilt in it. There’s a lot of just confusion in it because it’s almost sort of unbearable. The fact that they’re not quite themselves already and then the fact that it’s going to get worse, it’s like you’re on quicksand or something. In some ways, like I was completely blindsided by the possibility that my mom gets sick and dies. Like what? This isn’t supposed to happen. And then I was double what with my dad. Like, no way. There’s no way he’s getting dementia. There’s no way he’s dying. I’ve done it once. I’m done.”
Dealing With Anticipatory Grief
I have experienced the passing of some close family members, but I have been fortunate that both my parents are still alive. While my Mom is alive and mentally aware, her body has deteriorated. She is 92 years old. She has severe osteoarthritis in her hip joints, knees and shoulders. She can’t move without being in tremendous pain.
For the last 9 months, with the rare exception of going to the emergency room or going to an urgent doctor appointment, my Mom has remained in her bedroom. She moves from her bed to a recliner in the corner of her bedroom. She gets up only to use the bathroom. She eats all of her meals in her bedroom. At bedtime, she goes back to her bed. She refuses to see guests and just wants to be alone. She is grouchy, frustrated and most of the time unhappy. I feel part of her unhappiness is self-inflicted, because she refuses to go out in public and be seen in a wheelchair.
I have mixed emotions about my Mom’s condition. On one hand, I am happy to know my Mom is alive and I can see her anytime. On the other hand, I feel tremendous sadness. I remember the days when my Mom was full of energy and cared for me. Seeing her relegated to her bedroom is painful. It feels like I am watching her die slowly. I find myself wondering when I am going to get the call.
I also feel guilt – guilt, that at times feels unbearable. I see my Mom sitting in her recliner staring out the window or watching TV. I want to help her get up and be happy. I feel like there should be something I can do to help, but there is nothing I can do. This is no way to live the last years of one’s life. It hurts to watch. It pains me to say this, but the thought of her dying does cross mind – because it may bring her relief from a miserable existence. Watching her wither away slowly is excruciating.
I am trying to cope with my Mom’s condition the best I can and not let it affect my relationship with my kids and wife. I am trying to embrace the time we have together – even though my Mom has never been much of a talker. Fortunately, I have a trusted professional I speak with you who helps me tremendously. My wife has also been tremendously supportive through all of this. If you know or are caring for someone that is terminally ill or no longer themselves, it is difficult. Don’t ignore your feelings and seek support from friends, family or professionals.