Monday, January 09, 2023

Where is the missing loved one? ...

 For the past few weeks I have been hearing about what Bruce was like or what Bruce did twenty or thirty years ago.  Pam is speaking about Bruce in third-person narrative.  I listen with a smile and ask her who I am.  She just chuckles, but never actually answers.  The other day we had mandarin oranges with dinner.  I felt full and did not eat all of mine and left them on the counter in the kitchen.  Last night she asked me if I had seen the person that left the oranges on the counter.  I replied that I am that person.  I got the same chuckle.

So it appears that we are at the point where she is no longer sure who I am.  I have noticed this with the morning hug also.  Every morning when she wakes up, we hug in the hallway and then I take her hand and lead her to the bathroom.   I have noticed that some of those hugs are less enthusiastic.  Maybe she is not sure who she is hugging.  I dreaded this day.  But now that we may have arrived, I am ambivalent about it.  I have great sadness about what is happening with her.  I am tearful when I try to talk to anyone about it.  But I know that I am doing whatever I need to do to keep her comfortable and safe.  Because of that, this milestone brings on no specific emotion.

Sleep continues to be the biggest obstacle for both of us.  Last night she was in bed about 9:30 pm.  She was up and out of bed at about 2 am.  She made herself some oatmeal and watched TV until she went back to bed an hour later.  She did not sleep well.  She was jabbering and her arms and legs were moving with a very jerking motion.  I guess that is one of the Parkinson's symptoms.  She was back up about 6:30 am.  It's now 8:30 and she is eating the French Toast that she requested.  So when she sleeps in bed it is a few restless hours at a time.  And then she is snoozing much of the day while watching TV.  

For me the problem is...if she is up, then I am up.  And once up, I can rarely go back to sleep.  I have also started sleeping on the day bed in the den. The way she is laying in the bed takes up three-quarters of the queen-sized bed.  The other thing that I have noticed is that her sundowning has gotten much worse.  I often find her with that blank stare aimed at the TV with This Old House streaming.  

Just for kicks, I decided to do an Internet search for myself and for Pam.  I don't like to call it a Google search because I use Bing most of the time.  As I am looking through the results, I thought to myself... in some ways, this is your legacy.  These are your artifacts on the Internet that are left behind for the survivors.  But is this really fair?  We spend our lives raising a family and providing for them.  That is all hard work.  None of that  shows up on the Internet.  A decade from now, when they search your name will they find anything of value?

 So what kind of things did I find in my search?  A lot of it was connected to my nine years as an elected Select Board member in our town.  It was a job that I loved.  I think that I added value in those nine years.  Let's hope that others feel the same way.  I also found  remnants of my primary career in the computer industry.  I participated in writing the original release of TL9000, an ISO 9000 standard for telecom supplier quality.  Along with a few items from various employers like Digital Equipment and Computervision.  I also found some very old notes in genealogy forums.  So what did I find for Pam?  Almost nothing.  The usual information scavengers that show you at the wrong address with an old phone number.  Not really much of a legacy.

As caregivers for someone with a major illness, the hardest we will ever work and the biggest sacrifices that we will ever make are made in that role.  But none of that shows up on the Internet.  And for the caregiver of a dementia patient, the person we are caring for won't even know of or remember that work or those sacrifices.  Yet, we don't care about that.  We do it for someone that we love.

Coming up this week is the monthly lunch-time gathering of Pam's sisters.   I wonder if she will remember all of them?  Later in the week, one of our grandsons has a role in a play at the Boys & Girls Club of Manchester.  And on the 25th of the month she will have a followup video  appointment with the psychiatrist.  I have prepared a list of questions for them and I plan to email it the day before the meeting.  Otherwise we are just hunkered down for the winter.


  1. Good Morning Bruce. Always find something of interest as I review your postings. I was going to say ENJOY, but not really an accurate expression of my emotions, as I review your comments. I do appreciate your sharing your experiences with me/us. I often wonder what I will find diminished in my love ones functioning. This is hands down the most exhausting work I have ever done.By the way, as a young man I worked at a manufacturing plant ( Fruhauf Corp. ) , lifting and bolting on 115 lb Landing Gear on tractor truck trailers.Good honest work for decent pay. Caregiving is far more arduous and the pay stinks too .LOL.Charles

  2. What your going through and doing is the definition of selfless love, doing something with no expectation of getting something in return.

  3. Love and concern always on our shared, difficult journey, Cuz.

  4. Hey Sweet Cuz, thanks for the update. We're still here for you in thought and prayer. Thinking of the struggles you face, knowing that Mark may soon be facing the same. Our hearts go out to both of you and your families. With love.....