Mother and son
Mom and I, long before Alzheimer’s and the question that eats me up.

One Caregiving Question I Can’t Shake

The caregiving gift I want but know I can never have is certainty. I’ve learned to live with it for the most part, with the exception of one question. One lingering, at times haunting, question.

See, my dementia caregiving days are full of questions with no certain answers. Only assumptions, probabilities and best guesses. Caring for Mom and helping her live her best life is an eternal exercise of trial and error.

Straight questions and circular answers

This is because while Mom is still verbal (very thankful for that), it is nearly impossible to get straight answers to even the most basic questions, thanks to her Alzheimer’s.

How was your day?

What did you do today?

When did your hip start hurting?

What is bothering you?

Did the nurse see you today?

What made you smile today?

Alzheimer’s is commonly associated solely with memory loss by the general public. Prior to this wretched disease entering our life, that was the case for me. To my pre-caregiving self, Alzheimer’s Disease equaled memory loss and nothing more.

And while the desecration of Mom’s memory is indeed horrifically sad, having a front row seat to the disease’s destruction of Mom’s mood and her ability to think clearly as well as its confusion are much worse. For me, it is by far and away the cruelest part of this awful journey that we never wanted to be on in the first place.

Shifted expectations

For my own sanity and Mom’s best interest, I had to stop thinking in terms of “I’ll ask a question, Mom will respond and then I can help when needed.” It doesn’t work that way with Alzheimer’s or other forms of dementia. Those seemingly simple and straightforward questions don’t illicit the simple and straightforward responses one would logically expect.

It was a lesson that took longer than I’d like to admit for me to learn. Years down the path now, I’m getting better at deciphering what Mom is communicating by being more perceptive.

What’s her tone of voice?

Is her pace of speech like it normally is?

How about her posture?

And body language?

What about facial expression?

These days I’m resigned to not being able to rely on verbal answers to my questions. I still ask, it’s just that I don’t expect the answer to come by way of her words. This is one way my expectations have changed along with Mom, and it has been a massive help. To both of us.

via @RoandSteveRview

But one question persists

The problem is there’s one question that won’t leave me. One question that I inexplicably need a verbal answer to. My mind endlessly comes back to it. I know it’s unlikely, probably impossible, but I need a straight answer. Not sure why but deciphering this one isn’t good enough.

How does Mom feel?

That’s the question that’s eating me up from the inside out. Not how she feels in a given moment or on a given day. How must Mom feel about all of it? About Alzheimer’s painstakingly slow and egregious grand theft of all that makes her….her.

An opportunity

The drive back from this past Christmas (it was fantastic!) meant that I had Mom as a captive audience for roughly 3 hours. It’s a familiar ride with Mom by now and one thing that’s not different about life with Alzheimer’s is that quality car time is fertile ground for some of the most meaningful conversations life has to offer.

This question, the question, was not new for me. It was not something that had popped into my head recently. On the contrary, it had been festering for some time but until December 26, 2019 I had stifled my urge to ask. No longer.

It seemed natural. Or at least that’s what I told myself. Mom was having a good day. She was sharp and laughing at the start of the ride but I beat back the urge to spring the question straight away out of fear that Mom would feel pounced on. I told myself I’d ask if she presented the same way once she woke up from her car nap. Mom always naps for at least a portion of the ride. Always.

The ride on that day was no different. When we hit the 30 minute mark, she was out. Sleeping peacefully in the passenger seat. When she woke up an hour later, I was eagerly feeling out the situation.

The question

Her laugh at my dumb joke and relatively quick wit were my green light. She was thanking me for “helping her with everything” (she does this often and it breaks and fills my heart simultaneously every time) and I saw that as my opportunity–and went for it. I gently but directly asked the question.

Mom, how do you feel about Alzheimer’s and what it is doing to you?

I held my eye contact as long as I could while driving, knowing how important it is in connecting with her. And when the last word left my lips, I fought the reflex to fill the dead air.

For what felt like a month, there was silence. Mom said nothing and stared straight ahead. Her expression shifted from happy-ish to sad-ish and contemplative. It was clear she was considering the question.

As I was contemplating how long to let the silence linger, not wanting to push her, Mom’s answer came.

I feel sad and tired and I’m f-ing pissed that I’m losing out. I guess that’s how I feel.

It was two blunt sentences. Each one tied my stomach in a tighter knot. What I heard from her was along the lines of what I’d expected. But the certainty of her speech and weight of her words juxtaposed with the vacancy of her eyes tied my stomach into knots so tight that I wanted to scream.

I was gutted. Yet while the death knot in my stomach was receding ever so slowly, I began to feel something different. Gratitude. As painful as Mom’s words were to hear, I was grateful to have heard them. I was beyond thankful Mom found a way to express herself so succinctly.

Mom didn’t tell me anything that I didn’t already assume was true. But in answering the question, she gave me the one caregiving gift I’ve always wanted but thought I would never have.

For a brief but everlasting moment, she gave me the gift of certainty.

Surrounded by Alzheimer’s and Lewy Body Dementia. Founder of Ro & Steve. Working my way through life and dementia caregiving.