The four things I wish I knew from the start.

A grandmother looking out the window.Photo byImage made by the author with Canva AI.

“I’m mad at you,” my mom said, staring out the window and refusing to look at me.

For two weeks, she said only a few words to me. I knew something was upsetting her, but I know better than to push. Battles are easier fought on her timetable.

“Why are you mad?” I asked, searching my mind for all the ways I might have failed her in the last few weeks.

“You didn’t take us to the party,” she finally sighed. “You didn’t even ask if we wanted to go.”

“What party?” We hadn’t been invited to a party in months.

“For the baby.” She looked up at me and my heart ripped apart by the pain in her 80-year-old eyes.

It took a dozen more questions before I connected her hurt with pictures she saw on Instagram. A young couple we know had a baby reveal party, and my mom was sure she was invited and I chose not to take her.

“Everyone else was there.” She reached her conclusion by the eight people she saw in the pictures.

“No, mom, just their family and a couple of friends. We weren’t invited.”

“Yes, we were,” she huffed. “And you refused to take us.”

She turned back to looking outside the window instead of at me.

“I’m sorry,” I told her. There was nothing else I could say that would convince her.

Watching is not the same as doing

Most of my adult life, I’ve watched friends care for their parents and grandparents. I visited their houses, ate meals with them, even took vacations with a few.

In my mind, I saw what they dealt with every day. Caring for an older person was challenging, but I was confident I’d be ready when my time came.

It’s one thing to watch someone make a three-tiered, Midsummer Dream Wedding Cake on the British Baking Show, and another thing entirely to do it yourself. The same is true for caring for your parents.

It doesn’t matter how many hundreds of hours you spent watching friends do it. Until it’s your life 24/7 to take care of a loved one, you have no idea what you’re in for.

It’s been a few years now, and most days, I feel like I’m doing enough of it right to be a good son. It’s a constant dance between keeping them safe and making them happy. Yet, as I crumble in tears on the toughest days, these are the four things I wish I understood before I began.

A grandfather sitting on a park bench.Photo byImage made by the author with Canva AI.

1. You will struggle to live in their reality

The first thing you’re told when you start caring for a person with dementia or Alzheimer’s is to live in their reality.

That sounds easy enough. We were all children once, and the whole nature of play revolves around living in fictional realities. One day, we were in space, and the couch was our rocket ship. The next day, the floor was lava, and the sofa was one of the last safe rocks to stand on.

Maybe the secret as kids to living in another reality is fun. There are no consequences and you can be as silly as you want.

Living in a parent’s dementia reality is something else entirely. It means you’re often the bad guy, if you’re remembered at all. It means having the same battle every day, no matter how many times you’ve done it before.

“No, I did not sell your favorite chair. You gave it away years ago. Yes, that’s right. To your daughter,” I say.

Tomorrow, we’ll walk up this hill again.

Another problem is their reality can be dangerous. The car that drove past hours ago was someone coming to get them. The house isn’t their house, and they want to go home.

You stand guard at the door, because if they get out, there’s no telling where they would go.

2. You will worry when there is no right answer

“I’m going,” my 86-year-old dad said with determination. He was dead-set on going to Bible study one night.

“You’re not strong enough,” I tried to reason with him.

A few days earlier, he fell getting out of the shower. In the time since, I watched as he struggled to walk from his bed to the bathroom or his recliner.

“I’m fine,” he scowled with all the fervor of an angry 3-year-old.

He wants to go everywhere. It was a big enough fight convincing him he couldn’t go places alone, but now I fight to keep him home when I know he can’t take it.

He’s never fallen in public, so I feel guilty when I don’t take him to Bible study or the store.

Often, there’s no right answer. All you can do is try your best and move forward.

3. You will never sleep well

Thanks to bipolar disorder, I was never a sound sleeper. The creaks and groans of the old farmhouse I grew up in always woke me at night.

When you’re a caretaker, your mind is always hypervigilant.

What was that sound? Did someone fall? Did I hear them come back from the bathroom?

Even when my folks are both doing well, my mind never shuts off. I’m consumed with their needs.

Are they eating enough? Is okay for them to have pie for dinner? Do they have enough social interaction? Am I helping them maintain a measure of independence and dignity?

You feel like a failure more often than you want to admit. You reassess every decision in the darkness of night. Or, at least, that’s what I do.

An older couple walking on the beach at sunset.Photo byImage made by the author with Canva AI.

4. Your heart will break a little more each day

The first thing I do after work each day is check on my parents. Sometimes I’ll talk to them and there are glimpses of the people I’ve always known. Other times, it feels like talking to children. They repeat the same stories, often in the same conversation.

Pieces of them are gone, and a little more disappears every day. With each piece that disappears, my heart breaks a little more. It feels like death by 1,000 cuts.

“Your parents are so sweet,” a friend at Bible study told me a few nights ago. She’s a newer friend, someone we’ve only known for a few years. I wanted to tell her who my parents used to be, how active and helpful they were, but I said nothing.

I’m touched when anyone takes an interest in my folks, but new friends can’t see how much my parents once were. The people I knew most of my life are already gone.

I know it’s a gift to still have my parents while they’re in their 80s. Most of my friends lost their parents much younger. It’s also a privilege to care for them, to give back a piece of the care they gave me.

Caregiving is harder than I expected, though. It’s not a job where you can punch out after your shift. There are no vacations or holidays and your shift never ends.

At work, I joke that caring for my parents is my second job. In many ways, it is. Caregiving is also so much of my identity that I wonder who I’ll be when they’re gone.

Hopefully, that answer is still a ways off. For now, I’ll keep going.

Until next time, keep fighting.