Alzheimer’s takes so many things from those it affects—their memories, connections, and often their ability to communicate what’s going on. While it’s agonizing to be unable to chat and laugh with your loved one, it’s an even worse feeling to realize they’re in pain—and not know it at the time. As Alzheimer’s takes its course, the connection between cognitive abilities (to comprehend) and communication abilities breaks down and makes it difficult to communicate feelings of pain. Some studies have shown that 25–50% of people with Alzheimer’s are experiencing significant levels of pain.

This divide can continue to grow and cause our care receivers to be unable to share when they have a headache, toothache, back pain, sinus infection, urinary tract infection, pneumonia, arthritis pain, or—even worse—symptoms of cancer, broken bones, or elder abuse.

Here are some “signs” that your loved one may be in pain:

• Anxiety and agitation: UTI’s can cause a sense of heightened awareness—a nervous feeling that’s part pain and part irritation.
• Wincing or tensing when moved: Watch their facial expressions as you lift them on and off the toilet or in and out of bed. Watch their muscles—see if they’re favoring one side or another, or acting protective of one area. Watch their hands or feet—do they curl or spaz when being moved?
• Moaning, yelling, whimpering, swaying, or cradling: Think how you act when you stub your toe or have a toothache. How would you communicate that if you didn’t have words?
• Changes in appetite, sleep, or avoiding certain habitual routines: Just like when we’re in pain, we can’t concentrate. We spend all our energies on our pain, and other normal routines get sidelined.

These are some of the basic pain indicators. They’re what humans tend to do when in pain. As a family member or friend, it’s your job to be their care advocate, to keep the continuity in their care. Even if your loved one is in a care home or has a health aide, don’t expect them to be on top of this. You know their personality and can notice subtle changes. You’re the one who has been in their life the longest. You’re the one they need, the one they’re most likely trying to ask for help.

Do some basic health checks each week. Look for cloudy or odd-smelling urine. Look for dark stool that has changed and might have blood in it. Put on a glove and run your finger through their mouth to check for abscesses or loose teeth. Do a light massage from head to toe, gently pull on their limbs and rotate them, and feel for broken bones, cracked ribs, and a swollen abdomen.

Check for bruises, swollen places, and lumps on the head. Make sure their pupils are the same size. Listen for a bad cough or for rattling in the chest (might be bronchitis, pneumonia, or congestive heart failure). You might want to buy a blood pressure cuff (they’re easy to learn to use), stethoscope, and have a good flashlight available. This can save you exhausting doctor visits and give you an indication as to what’s going on.

Even though your spouse, mom, or dad has Alzheimer’s, they don’t stop being themselves. You’ll still see aspects of their personality, and you know them—you’ll be able to pick up on small cues. Listen to your gut. If you really have a deep gut feeling that something is wrong, it probably is. Don’t rule out elder-abuse. It’s sad, but it happens. Sometimes care assistants are just rough and don’t realize how fragile an elder can be. Others are cruel. If you have doubts, install a granny cam and stop by often.

We have to be sharp and aware of what’s going on. Even though we’re exhausted and have too much to do, this isn’t an area we can slack on. Our loved ones needs us. And if you find something now that you’ve overlooked, don’t beat yourself up. You’ve been thrown into the deep end of the caregiving pool and sometimes it’s all you can do to keep from going under.

Guilt paralyzes and you don’t have time for inaction.

Now you know. Now you’re taking action.