Tuesday, May 24, 2022

Is it going to be a good day or not?

Right now I am struggling with what to write about.  I have so many thoughts in my head, but none is translating to words that I am comfortable with.  I started an article about why we think that Pam may have Lewy Body dementia.  But the article bleeds of my engineering mindset.  I am not a medical professional so it is just my take on the reading that I have done.  I really want to write about what is her biggest frustration, losing the perception of time and the cognitive ability to understand time-sensitive activities.  But I feel like that is a smaller issue than just getting through one day after another.
Pam is still having more good days than bad days.  On a good day, she is alert and engaged.  We chat, we hug, and we do things around the condo.  But on a bad day, she is like in a walking coma.  She is quiet and dozing off constantly while binge-watching This Old House or some other TV program.  I can't really tell if it is a part of the dementia or if it is the  depression that she has dealt with much of her life.  Today she had a video appointment with the geriatric mental health folks that manage her case.  It was not a very useful appointment because Pam was there but just not engaged.  She said very little during the entire meeting.  And while I come to them prepared with my thoughts and observations, I try very hard to be the called upon visitor and not the focus of the appointment.
The value of engaging in face-to-face encounters with others is enormous for dementia patients in the early and mid-stages of the disease.  And as our daughter pointed out in the meeting today, this was much of Pam's very being as an adult.  She spent most of her career in retail and thrived on the personal contact and the concern and understanding she had for her customers.  But now retired, it is just the two of us together day after day, with limited journeys out into the world.  She had looked forward to more significant contact with her sisters once we moved back to New Hampshire, but that has not materialized.  We have had several gatherings with friends since the diagnosis and I have seen how she has been very engaged and conversational.  Just last week we had a good visit with some old friends that stopped by the condo.  They also own a motor home and we talked about finding a way to camp together.

One thing that we think would help is for Pam to go to an adult daycare program a couple of days a week.  Both her primary care doctor and the mental health folks have encouraged her to at least visit a program and see what it is like.  But thus far she has resisted.  Trips to the pharmacy and the grocery store just don't involve enough serious personal contact.
One thing that I have noticed lately is an increased level of agitation at times.  I first noticed it while driving in the car and she would comment on someone speeding by us or failing to blinker a turn.  Now I am seeing it around the condo.  It shows after a loud noise or unexpected event.  Yesterday we had macaroni with dinner and she complained that it was cold.  But mine was warm and hers came from the same pot.  Today she went to pour a cup of coffee and there was not enough left for a full cup and she wondered if I cared that she didn't get enough coffee.  I avoid responding verbally as much as possible.  So I just made another pot of coffee.
Beginning today I will try something new to break the routine.  Today I asked her "What I could do to make her day better?"  She replied that she wanted to go to a strip mall.  When I tried exploring which stores she wanted to visit she nodded off.   Just another day in the neighborhood.  <sigh>


  1. Sending you lots of love, Cuz for the challenges you both are facing.

  2. You write from the heart Bruce....I can feel the love in your words and the caring. Praying for both of you.

  3. Love reading your posts and hoping that you can find the best path to maneuver through this. We look forward to seeing you in three weeks! Love you both!

  4. Anonymous is me - Michele!!!

  5. Thanks for sharing Bruce. I know exactly how you feel. It helps to read your blog and know there is someone else out there dealing with the same issues. Does not make it easier per se for either of us, but I feel the compassion you have for Pam in your writings and I try to do the same. Stay strong!