• Mitzi Perez

Anticipatory Grief as a Caregiver

Updated: Dec 4, 2019

Anticipatory grief is real. It’s heavy. It’s hard. It’s confusing.

It hits you, time and time again, that your loved one is no longer who they were and that they will not be around forever.

Little by little, ALS takes away parts of my dad…

His independence. His ability to do simple tasks. His spontaneous nature.

It happens in waves…

In firsts.

And in lasts.


The first time he asked me to cut his food for him;

The first time he asked for help to go from his chair to his bed;

The first time he fell;

The first time he asked me to button his shirt for him;

The first time I had to write my own birthday card..


The last time we had a conversation where I didn’t have to say “what” after every 6th word;

The last time he drove me somewhere;

The last time he cooked his own meal;

The last time he took a shower by himself;

The last time he made an important phone call himself..


I barely remember when the lasts were. They feel like ages ago.


What ALS hasn’t taken away (shockingly, even to me) is his sense of humour.

My dad is legit THE funniest person I know.


To avoid anticipatory grief becoming an all-consuming monster, I find that it’s important to remember these key things:

- He is still my dad;

- I am still my own person;

- He can still care for me in his own way (concerned texts, sending me home with food, etc.);

- Caring for him does not make me any less his daughter;

- He deserves to maintain his dignity;

- And I deserve to take time to care for myself the same way I care for him.


But, at the end of the day…

I know I’m grieving. Constantly. And as much as I try to make it easier, it still sucks.

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