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Now I know what to say when someone tells me they’re a caregiver

We were sitting at a chain restaurant on an early Sunday morning. We’d just finished eating breakfast and drinking tons of coffee. Mom and her sister-in-law got up to use the bathroom. As soon as they were out of earshot I said to my uncle, my mother’s brother, “Do you see what I have to live with?”

We have a tiny family. Mom had one brother. My father had no siblings. Mom’s brother had three daughters, all of whom have at least one child, plus there are two husbands. That’s it. There are some second and third cousins scattered around, but if you count all my aunts, uncles, and cousins, plus me, mom, and my sister and her family, there are 22 of us total (23 if you count my sister’s long-time boyfriend, which I’m inclined to do). We live scattered around the country. Mom and I are here at home while the rest of them live elsewhere.

Being here at home used to mean family visits. We’d go to my grandma’s house about an hour away and my aunt, uncle, and cousins would come for a week, sometimes two. What a blast. Long summer days of playing outside, running through the sprinkler to keep cool, walking to the store for candy, running outside quick when we heard the ice cream truck. My cousins were like sisters to me. We wrote letters in the winter, we spent the occasional Christmas together. We had long distance (read– expensive) phone calls on holidays and birthdays. We were in each other’s weddings. Well, I never married, but I was in the weddings of two of them, and they were in my sister’s wedding. Of course, as we got older and the kids started coming we cousins drifted apart. When grandma died it became less urgent for them to come home for holidays or a week in the summer.

To my uncle’s credit, he and his wife make an effort to come here to visit. He attends an annual high school reunion (yes, more than 60 years after graduation he still goes to the reunion), and his wife has family here who have an annual reunion. They swing through on their drive through the state. This time (after missing last year because of the pandemic) we saw them for dinner, and then breakfast the next morning before they headed out to their next event. Mom will often lament that she doesn’t get enough time with them, but what she’s not realizing is that they don’t have to come here at all. We are out of the way for them to go to her family and his reunion.

Before their previous visit two years ago I wrote to them and let them know mom has dementia. I wanted them to know that she forgets names and to not take it personally if she doesn’t remember their grandchildren. Since then the phone calls to her have slowed considerably. I can understand why. It can be annoying to talk to her. She doesn’t remember things and she asks the same questions over and over (and over!) again. Which is where we were at on Sunday morning at breakfast.

“Do you see what I have to live with?”

“You deserve a medal. A trophy! The biggest one they have!”

I used the time I had alone with my uncle to assure him that she’s not that bad, that she could be worse, that she’s going to get worse; trying to let him know he didn’t need to worry about her. It was only much later that day that I realized how much his words meant to me.

No one ever asks how the caregiver is. No one sees the caregiver. No one puts themselves in the shoes of the caregiver. What they do is put themselves in the shoes of the person with dementia, they shudder, and they flee. No one wants dementia and even if they know it’s not, they still fear it’s catching. Those eleven words he said to me were shocking in their power. I was seen. I was recognized. I was acknowledged. You deserve a medal. A trophy. The biggest one they have. Because yeah, caregiving is hard. And when someone outside sees that, it is good to be seen.

And that’s all it takes. I don’t actually need a medal, or a trophy. I don’t even need to hear those words every day or every week. Just the once had amazing power. I felt lighter. I felt empowered. I felt like I could do this job another day. I had more patience with mom, I had more tolerance for her incessant questions, I had more to give. Those eleven words filled the well that drains faster than water goes over the cliffs at Niagara Falls.

So if you know a caregiver, acknowledge them, acknowledge their struggle, let them know they’re seen and appreciated. A few words won’t cost you a thing but it may save someone’s day. It may make someone’s job just a little easier, at least for a little while. Caregiving is hard, and those of us who choose to do it do it because we want to, but also, we do it so that no one else has to.

If you are a caregiver and you’re reading this, you deserve a medal. A trophy. The biggest one they have.

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