Monday, July 18, 2022

When the Status Quo is Not Alright!

 It has been almost a month since my last post.  In a way that is a good thing.  It means that there have been no significant changes in Pam's condition.  But I am not sure about my sanity.  The reality is that most evenings are spent with her watching TV (usually This Old House) and me on the computer.  Actually, that is how most days were spent when we lived in Maine.  I'm just not into the TV very much.

The weather here in Litchfield has been very nice.  Sadly, I have been fighting a case of Plantar Fasciitis and that has curtailed my walking.  That form of tendonitis has a very long recovery period because there is just no way to rest that tendon unless you are bedridden.  I have been doing some stretching exercises for it and that has helped.  I took Pam out for a ride in her transport chair last week and my foot felt much better.  A few days ago, I was able to get in two laps and yesterday I did one mile (3 laps).  So it is healing, but I am trying to take it easy.  I hope to be back to two miles a day soon.

We did have a small setback regarding the RV this week.  The Family Motor Coach Association rally in Fryeburg, Maine has been canceled.  We were disappointed because this would have been our first rally.   To make up for it we have extended our planned stay at Sebago Lake Family Campground out to eight days.   They have a superb beach, so we can work on our tans while camping.  It has been a lot of work trying to get the RV back into shape for travel.  It has been fifteen months since it went into storage and we took a lot of stuff off before it went in.  Fortunately, the storage facility is only three miles from home.

I continue to read about Lewy Body Dementia (LBD), which reinforces our diagnosis of Pam's condition.  I plan to discuss this on the next visit with her doctor.  It is planned to be a video visit, but I think she is due to repeat the complete psych eval soon.   This is the same condition that afflicted comedian Robin Williams.  He was misdiagnosed a couple of times, but his autopsy confirmed a severe case.  Robin's wife has been very active in bringing awareness to the issue and fostering research to find a biomarker.  She feels that early diagnosis can improve treatment and provide a level of understanding when your brain is doing funny things.  Regarding Pam, her balance continues to decline.  She got up from the recliner yesterday to put a dish in the sink and I had to jump up and steady her. I have also noticed a tremor in her left arm.  And when she walks, that arm is just hung at her side.  This is one of the Parkinsonian symptoms that are common with LBD.  This afternoon I walked to the mailbox and she had received a Country Living magazine.  She spent about an hour leafing through it.  That was a good sign.  

Sleep continues to be a big issue for her.  She rarely sleeps through the night.  Often she is awake at 2 or 3 am and watching TV.  Well, mostly falling asleep.  If there is an item on the calendar for the next day, she immediately heads to the shower and spends time putting on her makeup.  Then she sits on the couch in her coat and sunglasses, frustrated that we are not leaving any time soon.  When I did grocery shopping last week I bought a large pot roast.  This is one of her favorite meals.  At 3am, she began preparing the meal.  It cooked in the dutch oven for four hours.  Dinner was ready at 9 am.  We eventually ate it for lunch that day.  There is another example of her loss of understanding time, especially when planning for a future time.  And because I am a little reluctant to let her be up alone, I am also up these crazy hours.  The doctors would tell you that this is not healthy, especially for your heart.

So what is happening to my sanity?  I do not know.  I am beginning to have serious doubts if I can really do this.  It is not the caregiver activities that are the issue.  The issue is my emotions.  I just cannot stand seeing her like this.  She sat in the recliner much of today.  The first half of the day she was mostly dozing off.  This afternoon, she spent several hours just sitting there staring off into space.  She exhibited no emotion and often didn't even look up when I walked by.  Just staring.  I interrupted her several times to ask if she was OK or if she needed anything.  She would look me in the eye and say no.  I later found myself at the kitchen sink in tears.  It is so hard to see this. 


  1. Hang in there Bruce. This is one of the worst things you will go through in your life. Both my parents had dementia. My dad had blocked arteries to his brain that caused his condition. My mother also had dementia. At the time, I didn't have the help they have today. If you can, don't hesitate to get help. Take some time to get away on occasion. You have to take care of you health too. Sending you guys love.