Dear Carol: My dad has advanced dementia and can’t tell me what he needs so it’s hard to know how to help him. He can get extremely agitated and distressed. When that happens, I try one thing or another and eventually he’ll calm down, but how do I know whether I’m doing the right thing or if he’s just tired of trying to make me understand?
I’ll admit that I can get exhausted, so some of this might be my fault, but I want so much to make him comfortable. What should I look for when I try to help him? — LD.
Dear LD: My heart is with you. I’ve been where you are and that feeling of helplessness is awful. Most likely you already check many of these, but here are some ideas.
Could he be too cold or overly heated? Could he be hungry? Constipation is common. Could that be the problem? If he’s wearing incontinence wear, could he be wet or soiled? Could he be under-stimulated and bored? Overly stimulated by too much activity? More confused than normal because of some change in his environment? Is he on a new medication that could be causing discomfort? You may think of others unique to your situation.
I'll admit that because of my background with my loved ones, I think I tend to think of pain first. Yet all of the above need to be considered before medication is added. Once you’ve cleared those, consider pain as a cause for his agitation.
Explain the situation to your dad's doctor. If you want to try an over-the-counter pain medication, clear that with his doctor if you haven’t done so. It's possible that the doctor may suggest a prescription instead. Generally, when it comes to older adults, the lowest dose of any medication that is effective is preferred because all medications have side effects and older bodies generally don't clear them from their systems efficiently.
The great majority of people with dementia are older, and older bodies are more prone to arthritis and other conditions that can cause chronic pain. For some, arthritis may be only vaguely annoying, but for anyone with serious arthritis, the pain can be intense. Either way, for people with cognitive impairment such pain could cause them to “act out,” which should not be considered problem behavior but simply a plea for help.
I know you agree that older adults deserve pain relief. What I'm suggesting here are steps to help you make him comfortable in the hope that something helps. If not, keep prodding his doctor to try something else. Physicians are busy and might brush you off, so be respectful but persistent.
To address your question about knowing if you’ve found the source of your dad's discomfort or he’s simply exhausted from the struggle, I can only say that it’s not always obvious. That’s one reason dementia care is so hard. Your dad is fortunate to have someone who will keep working to make him comfortable.
Carol Bradley Bursack is a veteran caregiver and an established columnist. She is also a blogger, and the author of “Minding Our Elders: Caregivers Share Their Personal Stories.” Bradley Bursack hosts a website supporting caregivers and elders at www.mindingourelders.com. She can be reached through the contact form on her website.