Sunday, November 06, 2022

And now for a detailed status update...

 This has been a very good week for Pam.  She arose on Monday in a pretty good mood.  I had a couple of errands to run and she wanted to go shopping, so we combined it into one trip.  After my errands, we stopped at JC Penney to shop for clothing.   We returned home shortly after 1 pm and it was time for her to recover from the busy morning with a long nap.  

 Wednesday was the latest gathering of her sisters.  She has four sisters living nearby and one in Colorado.  With our condo as a convenient meeting place and me as their chef, this has become a monthly gathering.  It is very good for Pam.  Getting together with her sisters is emotionally important to her and the three to five hours of constant chatter, laughter, and remembrances has been great socialization for her.  I continue to be surprised at how much the personal interaction helps bring her out of the gloom of  dementia.

We had plenty of leftover food from the gathering of her sisters, so our oldest daughter brought her squad over on Thursday to whittle it down.  Courtney and Jay have three growing boys and they can consume quite a bit of food.   Pam had a dreary morning  and slept through most of it.  But when the boys were here, they had G-mom laughing and engaged.   We also have the monthly Coffee Hour sponsored by the condo Activities Committee on Saturday.  All of this social activity is really good for Pam.

 As some of you know, Pam is a retiree of JC Penney.  Prior to joining JCP, Pam managed a children's shoe store in Londonderry,NH.  She was hired by JCP in 1991, as the shoe department manager to help open a brand new store in Salem, NH.  When we moved to Maine in 2001, she transferred to the store in South Portland, where she sold custom window coverings.   She has always been an impeccable dresser especially when she was working and that has not changed.  Shopping for clothing is her #1 favorite pastime.  You can tell by looking at her closet.  As a retiree, she (and I) is entitled to a discount on each item purchased, even if it is on sale or clearance.  

 I have noticed that her symptoms, at least on the cognitive side, have not changed much in weeks.   I have seen a very limited decline in her memory loss.   She has the usual word (or name) finding issues, but the memory loss is mostly with recent events and not long-term memory.  She can't remember a conversation three days ago, but has no problem recalling when the girls were younger.   While she is definitely sleeping better, that sleep is often interrupted with her talking or moaning through her dreams.  She also continues to have visual and auditory hallucinations on a regular basis.    Those almost always involve one of her siblings or one of our kids, but they vary significantly from day to day.  She can go from a  bad day to a good one like flipping a switch.  On her bad days she is in a major state of confusion.  Not really aware of what is going on around her.  As I put it, she is in a walking coma.  This seems to be a common trait for some Lewy Body Dementia patients.

 Pam has two primary areas of cognitive loss.  One is understanding time and the second is problem solving involving multiple steps or processing a list of choices.  The connection from one step to the next just gets lost.  I have talked about her time issue here before.  Any sense of how long an hour is or AM vs PM is just gone.  This is especially an issue when trying to plan forward for an event.  

 The biggest changes have come on the physical side.  Her Parkinson's-like symptoms continue to worsen.   Her legs are getting harder to control.  She has the typical shuffle-walk.  But lifting her legs over the threshold of the car door has been a problem and I recently noticed that lifting her legs to get into bed has become an issue.  That said, it is similar to the confusion, some days she seems to be able to motivate as if there is nothing wrong.   And beyond her legs, she has worsening balance issues.    I about jumped out of my skin late yesterday when she took a tumble whiel trying to get her PJs on.   The tremors in her arms continue to worsen also.  I gave her a couple of school bells with the idea that if she needs help, just ring the bell.  So far that is working well.

 "But how are YOU doing?"  So far so good.  I don't consider myself to be especially stressed by all of this... so far.  She spends a significant amount of time watching TV (and napping).  Not being a big TV person, I am usually in the other room on the computer.  At other times, I bring reading material into the living room and sit with her while she watches TV.  A significant factor with this is that Pam is still fully self-functioning.  She can shower, dress, put on makeup, go potty, and even cook her lunch when she needs to.  When she needs help doing these things I am sure it will raise the stress level for me.  But I know that it will be very devastating to her.  She accepts the help getting from place to place, but this stuff is very personal.    I am also very grateful that she has not demonstrated any of the serious behavioral issues that many dementia patients have.  She seems to be more sensitive to tone of voice than she used to be, but I have not seen any anger issues or anything like that.

 I have begun to look at securing some in-home assistance.  But I have struggled with just what this help would do.  Pam has few hobby type activities.  She enjoys reading  and watching TV.  She has already finished one of the two James Patterson books that she bought recently.  We have a large jig-saw puzzle as a work-in-progress on the dining room table. So I am not sure what
"companionship" this help could provide.  I am really hoping that she might give in on the idea of adult day-care.  Our youngest had volunteered to take Pam to one and scope it out.  So, while trying to be prepared, I am not yet ready to pull the trigger on in-home care.

Well we have babbled on long enough.   Things are generally going well with us.  Pam has been busy socially, which helps. 




  1. This is quite a journey for you both. Check out Time Timers to help with how much time is left. We use them with our son

  2. It sounds like you are doing all you can at this point. Are you part of a Neurological Program? We're having our first "intake" meeting at ours this week and have high hopes that it will be of assistance in dealing with these new challenges. Here's a link -