Tuesday, March 05, 2024

Sing me a lullaby and I may stop crying...

 I would love to get into the head of a Lewy Body patient   Pam has been doing some really odd things lately and I would love to get into her head and understand why.  Do these things have meaning?  Or are they random acts caused by missing brain cells?  Some examples are in order.  Normally, when I wash towels, I leave the basket of dry, unfolded towels in the dining room.  With the help of our caregiver, Pam will then fold the towels as a form of upper body exercise.  Last week, instead of putting them away in the bathroom cabinet,  Pam left folded towels in each and every room in the condo.  One night I just went around picking up towels and putting them away.  What was going on in her head as she was leaving the towels around?

Another example is that she took my slippers from the bedroom and placed them atop the bathroom scale.  She then stuck a chocolate covered pretzel stick in each slipper.  Another involved spoons.  She took a booklet from the dining room and brought it to the bathroom.  Then she neatly placed five teaspoons on the booklet.  Another odd behavior involves cookies.  When I bake cookies, she picks up several cookies, takes a bite of each and then puts them back.  Just strange things like that.  I really wonder what is going on in her brain as she does this.   The pretzels were very tasty by the way.

I think this behavior is another stage in her decline,  For the past few days her nighttime sleep has been in fits and starts.  She will go to bed at 8 pm.  Around 9:30 or 10, she will be up and puttering around the house.  Then back to sleep an hour or two later.  Only to re-awake an hour tor two after that.  The last few nights have been just that way... all night long.    Last night I think she changed her clothes about seven or eight times.  Often the clothing is inside out.  It often involves two different socks and/or two different shoes.  Sometimes she will have two socks on one foot and one on the other.  I maintain a monthly calendar of events for us that she can ponder.  This week there is nothing on the calendar, yet she keeps asking me who is driving?

Her overall behavior may have gotten odd lately, but I am still very fortunate.  Many dementia patients develop angry, aggressive, or promiscuous behaviors.  Pam has shown none of that.  The two behaviors that cause me the most difficulty are her failure to speak and motivating around the condo with her eyes closed.   Often when we are trying to find out what she wants to eat, I provide her with some options.  I don't know if the problem is her inability to process the choices or that none of them are what she wants.  But usually, I line the choices up on the counter and give her the time to process.  Often, she will point to what she wants.  At other times I don't give any choices, I just decide.  At times her lack of voice is emotionally difficult for me.  Sometimes she will whimper or moan.  My assumption is that she is in pain.  But like an infant that can not communicate verbally, she is just not able to vocalize it.  It tortures me knowing that something is wrong, but I can't figure it out.

Often when she first wakes up, she is in a zone.  It is like a walking coma.  She tries to walk but is unable or unwilling to open her eyes.  So I did a little research and sight issues are common among Lewy Body patients.  They are often unable to recognize common objects.  Reading becomes a problem because their eyes can not converge.  That was a new one for me.  Normally, when you are looking at an object some distance from you, your eyes are aimed on parallel paths.  But when you go to read a book, that object is so much closer to you that your eyes are on converging paths so that they meet at the written words.  Those with Lewy Body have difficulty getting ther eyes to converge.  So maybe she keeps her eyes closed because they do not work as well and confuse an already confused brain.

This past Thursday was a very emotionally difficult one for me.    To some extent, she understands just what damage the disease is doing.  She began sobbing.  And it went on for about fifteen minutes.  I tried to comfort her, as did our caregiver.  Well, substitute caregiver, as our regular caregiver was on vacation.  Fortunately, the caregiver has a side gig as a professional singer.  As she was hugging Pam and trying to console her, she started singing.  I did not recognize the song, but it was one her mother sang to her.  For the longest time, the two of them stood hugging each other, with Pam sobbing and the caregiver singing softly.  I was in tears.  I could not hold it back.  The torture that a caregiver suffers watching their loved one suffering  the effects of the dementia and a perfect stranger singing a comforting song.  Why are we put through this lingering suffering?  Why are some of us able to transcend the suffering without going mad.  Why are we able to endure the pain and keep the focus on our loved one?  Questions that I can not answer.


  1. You are handling this challenge with as much courage and compassion as could be humanly expected, Cuz. Love and care to you and Pam.

  2. Love you two. I admire all that you do, I know it’s no easy. Thinking of you often ❤️

  3. The chocolate pretzel story was funny. Maybe she was giving you a gift? Yes, the questions are unanswerable and the situation torturous. I hear it in your words. A friend was just diagnosed with a disorder. More tests are coming but they are fairly certain it's a form of dementia.