The Lewy Body Roller Coaster

My mother – J.E.T – was originally diagnosed with Frontal-temporal Dementia in early 2011, but she has since been diagnosed with Lewy body dementia. However, I have used the word “diagnosed” for lack of a better word, but the reality of this horrible disease is that an accurate diagnosis is only made after death. (refer to previous journal entry to learn more about Lewy body dementia)

Often called the Roller Coaster of Lewy body dementia, this disease shows it’s true colors in a roller coaster like cycle of good & bad days. Over the past few months, we have seen a rapid decline in my mom, specifically the past few weeks. With the bad days becoming more frequent and the good days now mirroring what the bad days looked like months ago.

On a bad day we struggle to get my mom to open her mouth for medicine or food. This is not because she doesn’t want to; it’s because her brain isn’t able to communicate with the rest of her body. The past few days have been bad days, each one seeming to reach a new level of decline.

The good days are ones in which she shows verbal and physical responses. On a good day she is eating and drinking enough liquids in order for her to stay hydrated. While this might not sound like such a good day to others, these are the days we so dearly cherish and pray for each day when we wake up.

Today (July 11th) was a good day.

My mom’s courage shined through and her smile warmed our hearts. While she was still not able to stand or walk on her own – I was travel to Charlottesville, you can imagine she was exhausted. My mom patiently waited and listened to the doctor discuss with us what is to come of her declining health. And whigreeted bright & early this morning with her motherly voice and she continued to respond to her friends and family who visited throughout the day.

We also travelled to the hospital late this afternoon for a scheduled visit with Dr. W. Just as most days, even the good ones, the mornings are always better than the afternoons. So by this time of the day when we got to her appointment, let alone having to le my brave mother spoke only a few words – it was the quality of her words that counted – and her love for life shined through as she tearfully got out the words “I don’t want to die” – bringing us all to tears.

We did not learn anything from the doctor that we did not already know, but we DID learn something from my mother – she hears and understands exactly what we are saying.
Today was a good day.