Alzheimer’s Caregiving: Is Your Care Receiver in Pain and Can’t Tell You?

December 15, 2009 at 11:55 pm 3 comments

Alzheimer’s takes so many things from us–our memories, our connections, and at times, our ability to communicate what’s going on–right now. While it’s agonizing to not be able to chat and laugh with your spouse, parent or friend,  it’s an even worse feeling to think they’re in pain–and we didn’t realize it. As Alzheimer’s takes its course, the disconnect between cognitive abilities (to comprehend) and communication abilities break down and make it difficult to discern if our loved ones are in 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 not to be able to share when they have a headache, toothache, back pain, sinus infection, UTI (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 feelings 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 your 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 some of the basic pain indicators. They’re what humans tend to do when in pain. As a family member or friend, it’s our 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’re the one. 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, feel for broken bones, cracked ribs, 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 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.

Entry filed under: brain fitness, caring for parents, elder care, family caregiving. Tags: , , , , .

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3 Comments Add your own

  • 1. carol Wolverton  |  January 10, 2010 at 10:27 pm

    Love your column! Just found it. My mother, 84 years old, suffers from Alzheimer’s. She suffers from head pain and has had an MRI and a Cat scan just recently done. They can not find anything wrong. I am at a loss on how to treat her pain or what the pain is. I have tried Aleve, Ibuprofin, and sudafed. The neurolgist has just prescribed cardiotek along with her arricept and numenda. She has lived with us the last 5 years. Do you know if it’s normal for alzheimers patients to suffer with unexplained head pain? Thank -you

    • 2. Steve  |  January 25, 2010 at 9:56 pm

      Hi Carol,
      No, head pain is an unusual symptom. Usually, there’s not much physical pain associated with Alzhiemer’s. My mom had Parkinson’s and Alzheimer’s, and much of her pain (legs, muscles, weakness) was attributed to Parkinson’s. It doesn’t seem fair–Alzheimer’s is enough, you shouldn’t even have to get a cold if you have Alzheimer’s. As I can see you are, stay vigilent. We’re our loved one’s advocates–their voice, and so much of the time it’s caregivers who find the diagnosis.
      I’ll be thinking of you and your mom, hoping some pain-free days are coming her way.
      ~Carol O’Dell

  • 3. Diane LeDonne  |  February 16, 2010 at 10:16 pm

    My mother died last year from complications of Alzheimer’s. She often complained “my head hurts” and used to hold her head next to mine as we held hands. I believe she really did have pains in her head. We relieved it with over-the-counter tylenol.


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Hi, I'm Carol O'Dell. This blog will include stories and lessons I've learned while caring for my mom, and now as I speak to caregivers around the country. I hope to offer suggestions, ideas and insights that will help others.

While this blog is supported by Dakim Brain Fitness, I’m not blogging to promote the Dakim company or products. Instead, I’m writing about how caring and being cared for affects your life and your family. My hope is that this blog gives you a place to learn, reflect, gain new perspective to make it another day.

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