Saturday, October 28, 2023

This Is Not The Yellow Brick Road....

 I think we may be entering a new phase of this journey.  I have noticed several changes in Pam.  One occurs around dinner time.   I have found her sitting in the recliner with a blank stare and she doesn't even respond to my voice.  I suspect that she has no idea of where she is or who I am.  It is like an extreme case of 'sundowning'.   

The other change that I am seeing is a behavioral one.  She woke up early on Thursday and eventually settled into the recliner.   For the entire day she was negative and obstinate.  She refused to have anything to eat  She refused to take her meds.  She  refused to even refuse when the care provider arrived and suggested some activities.  She would not even answer questions about whether we could help her or not.  I have heard some real horror stories about behavior issues from other caregivers.  I hope that we are not going there.

Pam has been taking an OTC pain reliever for her back pain.  Recently, she has had great difficulty  swallowing the pills.  My last trip to the pharmacy included getting the gelcaps and the liquid version of that pain reliever.  Given her extensive medication list, I don't even want to think about what this portends for the future.

One of the problems that we are having is the height of our bed.  The bed frame with box spring is fifteen inches tall and then the mattress is another eleven inches.  With her loss of range and strength in her legs, it is very difficult for her to climb into bed.  We tried an old pink step stool that we have had since our  girls were toddlers, but that did not work.  So I purchased a two-step stool that seems to work much better.   We got a hospital-style bed rail to keep her from falling out while she's sleeping, but it has presented another unforeseen problem.  When she needs to go to the bathroom in the middle of the night, she hangs her legs over the side of the bed, right through the bed rail.  When I ask her to lay back so that I can pull her feet out, she complains.  So I have ordered a solid cover for the bed rail.

Recently, she has begun crying or whimpering at night.  At times, she seems to be awake and at other times she appears to be asleep.  I have asked if she is in any pain or how I can help or what can I do and there is little to no response.  She does not know how I can help.  It is very hard to listen to this.  Much like the mother of a crying infant, there is a desperate need to respond and relieve whatever is causing the discomfort.  But I have been unable to find out the cause.

Experts have broken the lifespan of dementia into seven stages, and generalized which symptoms are prevalent in which stage.   When I reviewed that list for Dementia with Lewy Bodies, Pam appears to be in Stage 5 and leaning into Stage 6.  She can still shower, eat, and go to the bathroom on her own.  She does need helping getting dressed and getting into and out of bed.   Walking and balance are her biggest physical issues right now.  That and extensive sleep disorder.  In the two short years since the original diagnosis, this disease has progressed quickly.  As a caregiver, I am dreading what the future holds.


  1. If you ever need to talk, or simply want to, I am here, Cuz. Much love to you and Pam.

  2. Bruce,

    It is tough go; as frustrating as it maybe, remember, you are doing all you - or anyone - can. Your analogy with a crying infant is so true! You, Pam, and your family are in our prayers.