Losing a Little Everyday - Living life with Anticipatory Grief.

This is not a pity piece, but an awareness one. I’d like you to keep that in mind, if you make it to the end.

My mother was diagnosed with corticobasal ganglionic disintegration (CBGD) just about 10 years ago. It changed the course of our lives — hers the most. While I won’t get into the details of her condition, I will sum up the journey as something that started with a tremor in her hand — to loss of motor skills — dementia and currently loss of eye sight, speech, all movement. 

Why am I choosing to open up about this now? Because I believe 10 years is sufficient time to understand and experience the full force of anticipatory grief. I was introduced to the term by my therapist and it explained so much of my behaviour and emotions over the years. I want to talk about it as, grief is often viewed through one dimension  — death, but, there’s so much more to it. Incomprehensible. Unacknowledged. 

Starting with what is Anticipatory grief? [University of Rochester Medical center] It is the feeling of sadness and loss before a loved one dies. It can also include feelings of anxiety, anger, loneliness, and guilt. 

What causes anticipatory grief? [source: Cleveland Clinic: Health Essentials]

• A terminal diagnosis or life-threatening illness

• Changes in a loved one's condition

• Worrying about their suffering

• Worrying about what it will be like at the end
  

Zenia from 2015, started to feel a myriad of these emotions and failed to translate what they really meant — not initially at least. 

At the beginning, there was a lot of anger — trying to manage a career and work this out with my family. Anger eventually started to turn into acceptance and crippling anxiety. The smallest things would trigger me — work, friends, nonchalant comments. I explained what I could to my then boyfriend, girlfriends, work friends, many tried to understand and lent me a listening ear. It helped, but didn’t steadily bring comfort. It felt like swimming against the current. I was unaware this was grief, and this unknowingly led to isolation. Isolation manifested into severe anxiety leading me to quit a job, break up for bit, alter my personality to heavily people please, cry so much, get agitated at the smallest things, ‘try to be okay’ It. Was. Exhausting.  This combined with the oldest child syndrome – I wanted to control every variable besides my mothers illness. Impossible, but I was naïve to believe I could. As the years progressed, we started to understand the nuances of her condition better, we were given her timeline, we researched — case studies, medical journals, forums. 

It was also when I decided to move away from home — chose love, chose the opportunity to provide for myself and my family better. But no one prepared me for the guilt that came along with that.

Yet another swim against the current. No matter how hard you try, you don’t get too far.  

I did my best to describe this feeling, you know. With no disrespect to anyone — people understand, but only for a while. Everyone has their own lives, and when wrapped in them, they intentionally or unintentionally forget what is constant for you, it is just a glimpse for them. I’ve never been able to describe the intensity of this grief to anyone over coffee once a month, because we’ve been thought that grief is to be reserved for death. 

I grieve my mother every minute of every day.

When I can’t describe my days to her, when I couldn’t share a promotion with her, can’t show her a dress I chose for a wedding, can’t share stupid work emails, can’t show her the dishes I make or the way I’ve decorated my home — an interest we were both passionate about. When my sister and I reminisce a childhood memory and we want to know how stupid she thought we were.

She’s there, but really isn’t.  

All of this accompanied by the immense pain of seeing her deteriorate. The anxiety is paralyzing. The overthinking intensified. Life doesn’t stop though, along with this, I’ve had to focus on hitting goals at work, show up in my marriage, be there for my dad and sister, be there for friends, make new ones, do all things domestic, try to do something for myself…

When I was introduced to anticipatory grief, it felt like a warm hug. To be able to finally give my emotions a name. Lay to rest the voices in my head that have told me ‘I am making it more than it is’  for so long.

It was almost liberating. 

Don’t get me wrong, it hasn’t made it easier. I’m just more equipped at managing and compartmentalizing, prioritizing what is needed when and training myself to think rationally. (This does still come with bad days — the ones where you can’t leave the bed or hold a conversation.) 

If there’s one thing I want you to take away from my experience its’ - Do not go about your day with the assumption that people are the sum total of that one interaction. Anticipatory Grief is always around, especially when caused by terminal illnesses where it begins much before death.

If you don’t know where to start, here’s a prompt — know that you're sympathy amounts to nothing if it lacks Empathy. 

I’m saying this from lived experience…trust me…