An Uncertain Balance


Yes, it's another entry in the chronicles of "Dealing with Dementia."  (I'm seriously thinking bout starting a "sub series" in the blog called "The Dementia Diary."  After all, I did do the "virus diary" when Covid-19 came into our world.)  Time to get on the roller coaster once again.  Although I *think* I have figured out the ride.  (Having said that the ride will probably change course, but...)

  • When mom is asleep she is ASLEEP.  It's best to just leave her be.  If she has to be awaken, it's going to be difficult.  She will definitely NOT be coherent and if left to her own devices she will go back to sleep.
  • When mom wakes up, she is semi-coherent.  It takes her a while to come fully awake and as such, when she speaks she has "mush mouth."  It might be difficult to understand, but if you take your time you can figure out what she is saying 90% of the time.  It's best to give her 30-60 minutes to really wake up.
  • Once she is fully awake she is generally alert and talkative.  She will get more coherent as the hours go by (and if she has had some nutrition).  Also as the day goes by she will be more polite and less demanding.  In the hours after awaking, she will be more "unfiltered."  (Don't be surprised if she says hurtful things, is impolite or is extremely sarcastic in her tone and facial expressions.)  After being awake for several hours, she is more like the person she once was.  She will follow social morays and be less uninhibited.

My challenge is figuring out where we are in the day.  When I saw her on Thursday, she had a rough night.  She told me she hadn't gotten to sleep until 2, so of course when I got there at 8 she wasn't awake.  It makes complete sense.  With that in mind, to have a good conversation with her, I should have spoken to her after noon.  Last night, she had a better (earlier) night.  When I called before nine she was awake and able to speak with me.  She had not been awake for long, so she was still (sort of) in that second phase, but I am confident that later in the day she will be good to speak to friends and family on the phone and in such a way that most of her friends will assume that she is "cured."

 Which brings me to the next challenge.  She is not cured.  There isn't a cure for dementia.  If you are reading this and you know my mom and/or are friends with her, please know this.  Depending on where she is in the daily "cycle" (which is what I am going to call it), she could (and will) speak to you in a different way.  She may be abrasive and even rude if she isn't fully awake yet.  As they say, "don't take it personally."  (It's harder than you think; I'm her daughter and it's hard.) There is no set time when she is at her "peak."  I suspect that if she is awake and alert earlier in the day, by the end of the day she will probably be tired and less conversational.  We all just have to "roll with the flow, wherever it goes."  (Thank you Michael Nesmith.)  One day she may be very chatty; the next not so.  She may make sense; she may not.  It is my job, as her daughter (and hopefully her friends will follow suit) to make her comfortable in conversation.  To be supportive and not insulted.  When she is politically incorrect (to put it mildly) to just move on and as the song says, "let it go, let it go."  To encourage her to talk about things that she loves and cares about.  And, most importantly, to not have expectations, but just love her for who she is now.

 


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