Be Their Voice

Susan Woelfel and her dad

Susan, the author, and her dad Roger catching bluegills on Shawano Lake

When you are in EMS long enough, you will get that call for a “frequent flyer” and your mind goes to that place where you know it shouldn't. “Here we go again.” “This person is crazy.” “There is never anything really wrong with them.” I know this has crossed my mind a time or two out in the field.

Look at this type of call from a different perspective: in the mind of a patient with dementia. My father Roger Piehl was recently diagnosed with Lewy body dementia (LBD). This diagnosis took more than a year to obtain, and during this time, my family went through a lot. Dad lives on Shawano Lake.

LBD is the second most common type of progressive decline in mental abilities, the first being Alzheimer’s disease. You may recall the late actor Robin Williams had LBD.

With my father, we noticed he was having a lot of anxiety about his health. He continually told us something was wrong, even at times saying he felt like he was losing his mind. He was treated for anxiety, but the medications they put him on never really worked. He had many trips to the emergency department and to different doctors. Most of the appointments were to confirm he wasn’t having a stroke. He was certain he was and made us all believe as well. Each appointment confirmed he was fine. They couldn’t find anything wrong with him.

The week before Christmas, the hallucinations started. Dad was admitted to the hospital, where he finally received his LBD diagnosis. The diagnosis was upsetting, but at least we knew what was really going on and how to care for him. As my sister and I look back over the past year, knowing what we do now about LBD, we can see the progression of this dementia. We were fortunate my father was always treated exceptionally well at all of his appointments and at his emergency room visits with ThedaCare providers.

The patients who call for help over and over again may appear to emergency providers as not mentally stable. But can you even imagine having some or all of these symptoms going on at the same time? Wouldn’t you seem crazy if no one believed you? Knowing what my father went through, I feel I need to be an advocate and ask EMS and caretakers to take a step back and remember: they are scared and going through something that is very real to them. Compassion and understanding go a long way in patient care. Let’s try to be the voice of reason that they have lost. The choices we make and the manner in which we behave are a constant reflection on our professionalism.

Signs and symptoms of Lewy body dementia:

* Visual hallucinations. Sometimes one of the first symptoms of LBD, those affected may see colors, shapes, animals or people who aren’t there. Some people also experience sound (auditory), smell (olfactory) or touch (tactile) hallucinations.

* Movement disorders. Symptoms may be similar to those of Parkinson’s disease, such as slowed movement, rigid muscles, tremors or a shuffling walk.

* Poor regulation of body function. Blood pressure, pulse, sweating and the digestive process are regulated by a part of the nervous system that is often affected by LBD. This can result in dizziness, falls and bowel issues.

* Cognitive problems. Those affected may experience thinking (cognitive) problems similar to problems experienced in Alzheimer's disease, such as confusion, reduced attention span and eventually memory loss.

* Sleep difficulties. Those with LBD may have a sleep disorder called rapid eye movement (REM) sleep behavior disorder, which can cause them to physically act out dreams while asleep.

* Fluctuating attention. Those affected may experience frequent episodes of drowsiness, long periods of staring into space, long naps during the day or disorganized speech.

* Depression.

By Susan Woelfel, ThedaStar Communication Specialist, EMT