Remove the comma

This week, I was part of a conversation with several women who were contemplating what it would be like to be living with Alzheimer’s - questioning even if they would WANT to live and most importantly, how it would impact their children. Would it be more difficult for their children to observe and live with the progressive changes, or would it be harder on their children if there was a choice to die sooner rather than later, before dementia had overtaken their mind or body. They had already begun to notice their own forgetfulness increasing and were wondering, am I okay? Or is this the beginning of something worse? These are difficult things to contemplate and discuss and hard questions to answer.

Though it is important to note that memory loss and forgetfulness is not associated only with dementia. Everyone experiences memory loss with age. Memory is the mental capacity to retain and revive things learned or experienced previously. There are broader cognitive impacts that can be identified early with dementia. However, sticking with the concern at hand, I took the opportunity to share my own experience that I had with my mom – that I had become a reluctant observer of memory loss and cognitive impairment and its progression.

My mom had no short-term memory for a period of several years as she lived with dementia. I grew to figure out, over time, that when I was with Mom, I was living with her, in her new world, in the present moment. She knew what she knew in that very second. In some strange way, although it was extremely limiting, it was also oddly grounding.

As I continued the conversation with these women, I shared that, for me, these were sacred moments with Mom. But it wasn’t automatic. It took me a while to figure out that there was no reason, and no value in ever saying, “remember, Mom, I just told you that.”  

The simplest way I can sum it up is to remove the comma. Rather than directing a command to your loved one, “Remember, Mom!” tell YOURSELF instead to Remember Mom.

Today I am participating in the Walk to End Alzheimer’s. I have dedicated time as a volunteer and a fundraiser over the past five years to the Alzheimer’s Association. So, this is a perfect day to remember Mom.  Below is a rerun of a post I wrote on June 17, 2023, five months before Mom died. It’s about this experience of living with a parent, living with dementia, and the value of acceptance.

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Can you? (originally published: June 17, 2023)

Acceptance. As it relates to death, once upon a time, I thought it meant accepting that the person is no longer physically with us. Accepting that it can’t be changed. Intellectually, to me, I figured that was pretty straightforward. I’ve come to learn that acceptance is more complicated than that.

We also have to accept that once we have lost a person to death, we can’t change anything about our past relationship. And, we can’t change anything that we did, or said, the last time we saw them.

We have to accept that if we lose someone who is an integral part of our day, our life will change immediately.

We have to accept that if we had a plan with the person we have lost to death, those exact plans no longer exist.

None of that is straightforward. It’s not a matter of processing the logic. It is riddled with emotion. Acceptance feels hard.

I have also been learning about acceptance through my mom who is living with dementia. Accepting the incurable, terminal disease. Accepting how our roles have changed. And accepting that her new world means I often need to adapt my own thoughts and behavior.  Here is a recent conversation we had while coloring a picture of a donkey.

Mom: Is this grass?
Me: No it’s donkey fur.
(moments later)
Mom: Is this grass?
Me: No, it’s donkey fur.
(moments later)
Mom: Is this grass?
Me: Yes. Do you want the green crayon?
Mom: Yes.

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Acceptance. Mom processes differently now. There is more than one way to look at something. Grass or fur, it didn’t actually matter at all. And there are no rules in coloring anyway, right?

Both grief and dementia require a deep dive into that acceptance pool. And if you are going to float, you may as well get comfortable with impermanence.  The law of impermanence is a concept addressed in a variety of religions and philosophies. It states that everything has a beginning, a middle, and an end. The sound of a bell ringing is a beautiful symbol.

But honestly, I think many of us would like to ignore this law. I mean who wants to look around them, at everything and everyone, and acknowledge and accept that all will someday be gone. Because everything around us is part of our identity. The life we have built. Maybe even what gives meaning to this life.

On this soul ride, we may not grapple with the law of impermanence until or unless it is before us. When we experience that loss that shakes us to our core – a job, a relationship, a death. And then, suddenly we are hit with all of it. Impermanence, Grief, Acceptance.

Just as I have found a way, over time, to call grief my friend, I can also see a path for befriending impermanence. Well, let’s be honest, maybe they are both the kind of friend that on the surface, you can’t imagine why you would ever buddy up to them. They make a bad first impression. But the more you get to know them, you realize their redeeming virtues and so there you are hanging out on a Saturday night.  

Getting comfortable with impermanence is not an easy thing. But what would it feel like to try before it is thrust upon you? Can you see what impermanence has to offer? It promises an end to sadness, anger, and sorrow. It tells us that when we are suffering, it will someday subside. That certainly gives us hope.

And what if we acknowledge the more difficult view of impermanence. That every life, everything around you, including yourself, will not be there forever.

Can you let this serve as a reminder to not waste a moment because they are limited? Can you minimize the toxins that suck the life out of an experience? Can you feel the freedom of letting go of fear, disappointment, and regret by accepting impermanence as a gift? Can you accept that one thing is for certain, there is a beginning, a middle and an end to all of it?

*Thank you to everyone who has supported my fundraising over the years for the Walk to End Alzheimer’s. Today, I remember you too!

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