My husband are I are well acquainted with the challenge of managing severe chronic pain in the dementia patient. We have cared for my mother for just over five years. She has a severe spinal stenosis and osteoarthritis and is one of the lucky few allowed to keep a modest regimen of opioid medication for improved quality of life. In that time, we noticed that my mother was losing the ability to express how much pain she was experiencing, and we learned to recognize other clues that would indicate pain or other unmet needs. Some of the clues were subtle, others were quite dramatic. We learned to read her face, tone of voice, and shifting moods. Sometimes she would set her jaw in anger while snapping at us, and other times she would behave like a bewildered child, begging us for help. We also noticed that when pain would spike, so would the confusion. Her reactions varied, which made it especially challenging to manage her day to day routine. Oftentimes it WAS the pain, and once managed, she would return to her normal, cheery disposition.

 

Our most dramatic indicators of severe pain occurred when mom had an infection or fever looming. She was prone to urinary tract infections and, when infection was present, there would be terrible intractable pain and confusion. Other signs and behaviours included agitation, wandering, rummaging, excessive eating or drinking, wringing her hands, and weeping quietly. She would wander the house & stop sleeping. Her schedule would be disrupted entirely.

 

One experience sticks out in my mind as a turning point in understanding my mother's special needs in her journey with dementia. One night she repeatedly went into the kitchen and made herself various snacks and drinks. It was like a skipping record, and it was maddening. We had no idea what was going on. It went on for hours and mom was unable to tell me what she really needed. She was markedly more confused than usual. Around 4 am, I caught her muttering to herself while reaching for crackers: "Maybe this will help me". Suddenly I realized mom was in tremendous pain and was simply too confused to verbalize it. I gave her a dose of her opioid pain medication and some  non-prescription pain medication  with the fourth snack, and FINALLY she calmed down and was able to rest. By that point my husband and I were exhausted. We collapsed as well. That was an extremely trying night for each of us, but we were left with priceless takeaways in how to better ”listen“ to my mother's behaviours and body language. It helped us learn to better fulfill her needs during our caregiving journey with her. It turned out my mother knew she needed something, but was so confused, she mistook her agony for hunger or thirst. Eating was the only thing she could think to do for herself.

 

The next day, we met with her Primary Care doctor and got an antibiotic for the infection and continued her opioid pain medication and the non-prescription medication as needed. We resumed her normal routine within 48 hours. That experience taught me to ask myself what UNMET NEED my mother might be experiencing. Was she cold? Hungry? Nauseous? Was she in agonizing pain? Sometimes the answer was elusive! The patient with dementia is often unable to communicate the simplest of needs, and we have to try and learn the signs and indicators so we can best help them. We are not only their memory, but we are their voice and most knowledgeable advocates as well. Thank you for bringing awareness to this crucial aspect of caregiving. There's no reason a patient with dementia should suffer needlessly in severe pain! Thank you for letting us share our story. Godspeed and gratitude to all at seepainmoreclearly.org!

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Our team's response: Thank-you so much for sharing your story and for caring for your mother. Nonverbal behaviours are very important in understanding unmet needs in dementia.  In our research we have found that those caregivers who spent more time with the person who has dementia may best able to decode non-verbal pain behaviours