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LBD Stories: I Should Have Known Better

Even with LBD, my father Bruce was a charming man.  He flirted regularly with the female staff at his long term care residence and joked with all the men, who were kind enough to laugh even when his jokes no longer made sense.  The essence of his personality was unchanged by the disease, for which I was incredibly grateful.  But I was certain it would only be a matter of time until the disease would manifest itself in behavioral problems.  

When I got ‘the’ phone call that he had hit an aide, I wasn’t surprised.  Dad had become slowly but increasingly withdrawn and confused in recent months and began resisting help from the staff.  We all chalked it up to disease progression.   A month later there were enough repeat incidents that we tested him for a urinary tract infection, but the results were negative.  As time wore on and the behavior continued, we eventually sought help from the neurologist who started him on a low dose of an atypical antipsychotic medication.  The hitting became less frequent, but did not resolve entirely.  Weeks turned into months and my heart grew heavy with worry.  How long would the staff tolerate his behavior until he was asked to leave?  And what would we do then?

Dad then complained of some back pain and was given acetaminophen by the nurse.  After a few days of treating the pain, he was more alert and jovial than he had been in months.  Was it actually pain that caused his recent changes?  The nurses and I agreed to continue his regimen of pain management and the hitting problem disappeared entirely.  Within two months, the neurologist discontinued the atypical antipsychotic medication entirely.

I should have known to consider that pain, not just infection, might be the cause of changes in behavior.  After all, educating people about LBD is part of my job at LBDA.  How many times have I read the materials crafted by the LBDA’s Scientific Advisory Council, including the following words written for emergency room physicians: “The first line intervention in treating problematic behaviors in LBD patients should be non-pharmacologic measures including evaluating for physical ailments that may be provoking behavioral disturbances (e.g. fecal impaction, pain, decubitus ulcers, urinary tract infection).” 

But I missed it and I kicked myself when I learned how blind I was to the obvious.  I was only somewhat comforted by the fact that his nurses and doctors also missed it. 

Dad passed away in March, 2011.  In June, I read some research news about dementia and pain management and how it may improve behavior.  I realized then it was time to share at least this one caregiving lesson I learned firsthand.  And in doing this, I have also decided to forgive myself for not being the perfect caregiver.

There is no value in beating ourselves up over what we didn’t know or couldn’t do for our loved ones.  We do the very best with what we have at hand in the moment.  Some days it’s more than others and we WILL make mistakes.   But the mistake is its own salvation, for behind it is our effort to make our loved ones’ lives better.

Angela Taylor
Director of Programs
Lewy Body Dementia Association