The Internal Chatter of a Caregiver’s Mind

(Time Period: Throughout the last eighteen months that Mom was in the care home.)

Across the Table

We’re being seated with friends at a restaurant on a Friday night. It’s the exhale of the work week. As menus are distributed and drinks ordered, friends wanting to be thoughtful ask, “How’s your mother doing?”

“Thank you, she’s doing fine,” was my typical response. Sometimes I left it at that, but more often, I would describe an interaction from the week:

We had a nice visit today and sat outside on the patio for a while.
She’s sleeping a lot now and has lost more weight but her appetite is still good.

Occasionally, I’d offer more information or tell a little story.

Then my internal chatter would start:

Am I talking about her too much?
Maybe people don’t want to hear this.

Though I knew they cared sincerely, I wondered if sometimes they were just being polite or felt obligated to ask the question. I was self-conscious about being the person with the heavy subject: Alzheimer’s, not quite the ideal dinner conversation.

Let’s Change the Subject

“Let’s change the subject.” That’s what we say when we want to stop talking about something unpleasant or when we’ve heard enough. Sometimes these words are spoken the very minute a tough subject is raised. We don’t know what to say to comfort each other. There are no perfect words and it’s understandable. We aren’t mind readers.

In my role as my mother’s guardian and primary manger of her care, I often grappled with how much to convey about my experience in a particular moment. I questioned, “Am I just imagining that people don’t want to hear about this?” I concluded that what I was sensing was discomfort with a difficult topic, one that brings up the fear that it could happen to us – our parents, our partners, ourselves.

I realized that I was picking up on something accurately. It felt similar to when someone dies and the sympathy cards declare: “There are no words.” I didn’t want to make people feel awkward. What was there to say other than, “I’m sorry. That’s so sad. It’s a terrible disease.”

When I reported on Mom, did I ever over-share and provide more detail than necessary? I’m a talker, so probably yes. I don’t know for sure because I was in the middle of it. While going through it in real time, I may not have been able to express succinctly that there were still joys in the situation, that there was something to talk about other than that she was in a care home and “doing okay.” There was more to say. I wasn’t necessarily looking for sympathy, for a solution, or a suggestion. I just wanted to talk about my day which often included a Mom story.

Taking care of Mom spanned several years. Sometimes we all needed a break from the topic.

A Caregiver’s Mind

There were times that I was afraid I was talking about her too much. There were things I couldn’t relay adequately or fully express. Launching into something deep over appetizers at the end of everybody’s work week didn’t feel right. I sensed when to keep it to myself with a simple “she’s doing well,” but plenty of times I was compelled to share a story and appreciated that my friends allowed me to do this.

Especially in Mom’s final year, I found myself talking less about work, vacation plans, or social events on my calendar (the usual things that are discussed over dinner with friends), and more about her. She was my main topic: I wanted to talk about her. She was still here.

As the person with the heavy subject, sometimes I needed help carrying it. Other times, I wanted to share what I was discovering, that there were little joys hidden amidst the heaviness. I hoped they would see them, too.