Dementia Perspective: Loss and Grief
Updated: Nov 13
I'm grieving 'cause I've lost my mom.
Oh, no, wait, found her! She's right there, peeing on the carpet!
Throughout Mom's dementia journey, I've wrassled my thoughts and feelings into dementia perspectives that sometimes differ from the majority. I write them out so I can understand my own mind better, and connect with others who are also thinking dementia-different.
One of my most oft used tools in my caregiver bag of tricks is accessing the advice, support, and compassion of others in the dementia community through social media. I am grateful for instant access to their stories, both dementia victories and defeats. They prop me up and keep me going and I'm thankful for the daily reminders that I am not alone in the gigantic struggles of this journey.
Through this community involvement I've found that I am pretty aligned with other family caregivers feelings as we all slog our way through the dementia landscape and more often than not see my emotions perfectly mirrored in theirs, except for...
When it comes to these two I'm seemingly completely out of step.
I surmised that one of these things (me) is not like the others (apparently everybody else) on this issue due to sometimes daily, sometimes weekly variations of sentiments like the example below on dementia caregiver Twitter, Instagram, and FB accounts...
The hardest thing you will ever have to do is grieve the loss of a person who is still alive.
...and I gotta tell 'ya, I. DON'T. GET. IT. I mean, is this really how everybody else is feeling? Do statements of this sort comfort everyone except me? Or are others as baffled as I am with these types of platitudes? They mystify me on so many levels.
Firstly, even at stage 7 dementia, Mom is cognitive enough to know shit ain't going in the right direction for her, but she would not be at all okay, or comforted, if she suspected I grieve her now as some shell of humanity. She'd be alternately devastated that her little girl is having to work through such emotions and peeved even more than she already is (thanks, Dementia) that I view her through a prism of sorrow. And while we all recognize that she's vastly different than she was 5/10 years ago, I certainly gain nothing in grieving for abilities that are now in the past.
I recall three instances of grief and feeling like I'd lost my mom in the early days of diagnosis (i.e. the first time she forgot my birthday), but I quickly realized grief is draining; it zaps the reserves of emotional fortitude that I need for caregiving, and fills me with a victim mentality that cripples my attempts to be successful at my job: helping Mom live her life to the very end. So, I kicked 'em to the curb and moved on.
Equally as perplexing to me? What qualifies Mom, or any other person living with dementia as someone to be viewed as lost to us but still alive?
Is it because Mom can't remember my face? My name? Her name? How to speak? Her home, that paper napkins are not food, where/what the bathroom is, or that I'm trying to help her shower/toilet/get dressed - not murder her? Is it because she can rarely access pleasure, is often mired in anxiety, fear, anger? Is all that criteria for lost but still alive?
Do any of her gains count towards offsetting the above losses? Her newfound passion for peanut butter, her contentment in long drives, her thrill when meeting a tall, handsome man, her gratitude when you hand her a cookie (as heartfelt as it was two minutes earlier when you handed her the first cookie), her pleasure in the coziness of a warm bed, her chuckles when I take off her socks at night and tickle her toes. Would any of those pull her out of the lost but still alive category into just plain alive and a huge pain in the ass every damn day department?
Because, with love and affection, that's how I know her.
I challenge anybody to try and pull down Mom's pull-ups while assisting her in the bathroom, then let me know, on a scale of 1 to 10, how alive you found her? Is your answer somewhere in the millions? Mine always is.
Now if you wanna grieve the loss of blood that's trickling out of your nose from an accidental Mom-elbow to the middle of your face, THAT I GET!
And what's so hard about grieving anyway? That part's easy - an onion can make most of us cry. It only takes a mildly bad caregiver day to have me sobbing on my bed by the end of it. But it's not in grief that I've lost Mom - it's in frustration with the situation or myself because I reacted to Mom's dementia in a way that guaranteed more hardship for us both, not less.
A one-word change in this statement and then I get it!
The hardest thing you will ever have to do is celebrate the loss of a person who is still alive.
Now there's a challenge! For me the excruciatingly hardest thing in this dementia caregiving journey is to be open, present, available to snatch those small joys when they whiz past, to celebrate the wonderment of who Mom was, is, and will be.
I've fluctuated between failure and success at that challenge for the last three years and dementia's going to ensure that I continue to do so. But as far as grieving the loss of my mother when she's standing right next to me, grumpy, smiling, or an expression of utter blankness on her face, vacancy in her eyes, that is not in my wheelhouse.
Her soul is Mom - when she was young and now that she is old, before dementia and during, smiling when she's happy and roaring with rage when she's not. When her very last breath releases that soul back into the ether then she will be my loss, my grief.
Until then she's just my angry, funny, infuriating, huge pain in the ass Mom, currently peeing on the hallway carpet.