When You've Had Enough

I was reading through a caregiving support group recently when I came across a post from a woman caring for someone with dementia. She had walked into the bedroom and discovered that the person she was caring for had urinated on the floor. You could hear the exhaustion in her words. She sounded frustrated, shocked, angry, and probably wondered what else this disease could have in store for her.

Not long after that, I came across another post. This caregiver found feces on the floor, and their loved one walked through it, tracking it across the carpet. I could picture her standing there trying to figure out where to begin. Do you clean the person first? The floor? Find the shoes before they make it into another room? Do you cry? Scream? Consider putting the house on the market and starting over.

These are the things that happen to caregivers that nobody prepares you for, and parts of it are downright awful. We often talk about medications, doctor's appointments, memory loss, wandering, falls, finances, and finding help. We even try our best to plan for those things. However, nobody tells you that one day you may walk into a bedroom and find urine or feces on the floor. Or that the person you've known your entire life may do something so completely outside anything you've ever known them to do that your brain needs a few seconds to catch up with what your eyes are seeing.

And sometimes your first response isn't compassion. Sometimes you're just straight up pissed!

You're tired. You just cleaned that floor. You've already changed the sheets twice this week. There are three loads of laundry waiting, you haven't eaten lunch, and now you're standing in the middle of a mess you never imagined would become part of your life. You may understand exactly why it's happening and still find yourself thinking, I CANNOT believe this is my life.

I know I certainly did.

We need to give caregivers the space and permission to admit that part. We face enormous pressure to handle every caregiving situation with patience and grace. We're reminded that the person with dementia isn't doing these things on purpose, and of course that's true. Dementia can change judgment, awareness, continence, perception, and even the ability to recognize a bathroom or understand what to do once you get there.

Understanding that matters. It can help you separate the person from the disease and make sense of behavior that otherwise makes no sense at all. But understanding why you're cleaning feces out of the carpet doesn't make cleaning feces out of the carpet any less awful.

Both things can be true.

You can understand why it's happening and hate that it's happening. You can have compassion for the person standing in front of you while wishing you could walk out the front door. You can clean them up, change their clothes, scrub the floor, start another load of laundry, and resent every damn minute of it. That doesn't make you a terrible caregiver. It makes you a human being dealing with a situation most people can't fully understand until they've lived it.

Most of the time, the anger isn't necessarily directed at the person you're caring for. You're angry at the disease. You're angry at how much your life has changed. You're angry at the sibling who lives three states away but somehow has plenty of suggestions. You're angry at the friend who tells you that you really need to "take some time for yourself," as though you've completely forgotten there's a spa down the street.

Sometimes you're angry with yourself. Maybe you snapped. Maybe you weren't as patient as you wanted to be. Maybe the person standing in front of you couldn't help what happened. You knew they couldn't help it, and you got mad anyway.

We need to recognize that caregivers are ordinary people being asked to handle situations they were never trained for, often without enough help and with no idea what tomorrow is going to bring. Some days you handle it beautifully. Other days you get frustrated, say the wrong thing, walk into another room because you need to get away for a few minutes, and come back when you're ready.

We can’t expect caregivers to never get angry. That's an impossible standard to put on another human being. But anger also isn't a place you want to stay. Anger is a signal, and sometimes it's telling you that you're exhausted, that you've reached your limit, or that what you're managing has become too much for one person.

So listen to it.

And if the anger is showing up more often, becoming harder to come down from, or you're worried you might lose control, take that seriously. That's not a sign of failure. That's a sign that you need more support than you're getting.

You also don't have to turn every terrible day into a lesson. You don't need to find gratitude while you're scrubbing a carpet or convince yourself that tomorrow you'll handle everything better. Sometimes you need to admit that today sucked, figure out what you need, and give yourself a chance to recover from it before tomorrow brings whatever it's going to bring.