Created this post in May 2023.

My mother is dying.

There I said it.

These are the heaviest words I think I’ve ever typed or even acknowledged.  Well, except for the emails about my brother’s aneurism (AVM to be exact) back in 2007.  But that’s a whole other story for another day.

My mother was a complicated woman.  Strong.  Proud.  Fiercely independent.  Devoted to her family.  Dedicated to ensuring that her two children were taken care of in the best way she knew how.  And loving.

But that’s not who she is today.  You see, this disrespectful bitch named dementia appeared on her doorstep some time ago and began slowly robbing her of her memory, personality, control and autonomy over her body, everything that made her, my mother.

At some point, she just gave up fighting in ways that could have either slowed down or possibly eradicated the medical issues that ravaged her body.  And I got angry. Honestly, sometimes that anger resurfaces because she’s always been a fighter and stood up for herself.  My mother would argue you down about any and everything.  Now she can't hold her head up right, hold a conversation, regularly confuses or forgets who we are, and is no longer able to take care of her routine daily living needs.  She now needs round-the-clock care.

Over the years we've had many conversations discussing the likely outcome if she continued to ignore doctors' advice to take her meds, eat properly, get regular exercise, get some Vitamin D, stay hydrated, the list goes on and on.   She complained so frequently to me that her body was letting her down, her doctors weren't listening to her and that they were always trying to put her on a new medication, that I built up the courage to tell her that she had no right to complain anymore because she wasn't doing anything to give her body a real shot at any type of recovery.  I even asked her if she thought about how her health decline would affect the family. Of course, she replied by telling me that it was her body, that she could do what she wanted and to mind my business.  Then, as usual, she changed the subject.  Conversation over.

Her fighting days long past us, for quite some time I've felt relegated to the sidelines and watched in frustration as her body continued to deteriorate one layer at a time.  When she was able, she wouldn't let anyone help her.  God forbid anyone see her in a weakened or frail state.  Nope.  Can't have that happen.  Now there isn't anything we can do to slow down the affects her multiple conditions are having on her body.  So we try to make her as comfortable as possible, and I work really hard to make her smile and laugh every time I stop by, ignoring the meanness she throws out (which seems to be her default disposition now).

I've called most days - each time holding my breath until the calls end.  Those days when I called and didn’t get an answer however, I felt relief because that meant that my parents were probably asleep and that there were no emergencies that needed to be addressed.  As you can imagine, those nearly daily calls and my frequent visits began to take a significant toll on my mental health.  I felt - and still feel to some extent - tethered to my cell, sleeping with it and keeping it with me at all times where possible. Every call to and from the house puts me on edge.   Like the old cartoons from my day (think Road Runner) that black rain cloud follows me everywhere I go.  Its symbolic heaviness pulling me down.  Remember the movie Lady Sings the Blues where Diana Ross, portraying Billie Holiday, sang "Good Morning Heartache?"  The lyrics are fire:

"Good morning, heartache, you ole gloomy sight

Good morning, heartache, thought we'd said goodbye last night
I turned and tossed until it seemed you had gone
But here you are with the dawn
Wish I'd forget you
But you're here to stay
It seems I met you
When my love went away

Now every day I start by saying to you

Good morning, heartache, what's new?"

I have always loved that song, primarily because Ms. Ross put her entire soul into that performance.  I've watched this movie at least 20 times.  But it takes on a different significance for me now.

Earlier on, when we could have actual conversations, there was typically a new complaint.  Oftentimes, the complaints included anger and frustration directed at the doctors who just kept prescribing her meds, our family for 'harassing' her to follow doctors' orders, and of course the usual suspects: repeated refusals to do the things common sense, science, and frankly doctors advised that would help.  So, we've been shooting in the dark.  Coming to her and each other with a patchwork of ideas, suggestions and recommendations to help her and my Dad get through and manage this new normal.

Her physical pains have long stopped.  Now she sleeps nearly 20 hours every day.  I feel tremendous guilt because this is my Mother, and a daughter should be there as much as possible to bear the weight in a situation like this.  I've recently accepted that I can't help her the way she needs to be helped, and that realization brings me tremendous sadness.  I wish I had the money to bring in 24/7 care.  I wish I had ignored her stubbornness earlier and simply forced services on her to help them both live out the remainder of their lives as comfortably as possible.  But I simply can't afford to do so.  The best that I can do right now is manage the profound grief that this long good-bye has given birth to.

My parents will have been married 57 years this December.  They have been in each other's lives since they were teens so at nearly 78 and 80 years old, I'm not sure if my Dad can even remember his life before her.  I do know that his new role as her caretaker is wearing him down emotionally and physically.  And that, in turn, is affecting me and the kind of mother I am to my boys.  My brother isn't faring so well either although he might be doing slightly better than me.

The weight, the heaviness of this experience is nothing new.  I'm not the first to live through an elderly parent dying of a progressive disease or condition, and I certainly won't be the last.  But I can't escape it.  It engulfs every part of every day.  I don't have the luxury of not thinking about what's happening and what's about to happen.  I don’t sleep well.  Some nights I don’t sleep at all because I worry about the emotional and physical toll this is taking on my Dad.  I panic when I can't reach him by phone.  I worry that he needs more from me than he's admitting.  And I'm frustrated by my Dad's refusal to accept help until very recently because, well, he can still take care of her himself.

To add to this party, I went to a friend's funeral in March, and my uncle’s funeral (my Mother’s last remaining sibling) in early May, a few days before my birthday.   Oh, and I'm a single parent to boot.  We go hard or we go home in this family.  Nope, this journey is not for the faint of heart people.

The last three years have been both inconsistent and devastating. That bitch dementia just does not let up.  She continues to wreak havoc every day, robbing my mother of practically everything that makes her, her.  Today she had another doctor's appointment.  One she hasn't seen in years.  Before she left, I gave my mother some kisses and made sure to pack some of her favorite juice.  I didn't think it was possible, but she is even frailer than she was a few days ago.  Seeing her like this has been … sobering.  If I wasn't clear before, there is no doubt now.

My mother is dying, and I’m exhausted.