Thursday, September 07, 2023

Things just continue to fall apart...

My apologies for the big gap in this blog.  I just have not felt much like writing lately.  So much is going on that I don't even know where to begin.  

We have been utilizing a home healthcare aide for a few months now.  The current person is very conscientious and always professional, but only 19 years old.   She has been very diligent about following the care plan, which means keeping Pam occupied and not sleeping.   However, Pam is not one that wants to be pushed.    So they are just not getting along.  With Pam's personality, once she has taken a dislike there is little chance of recovery.  So I have requested a change in personnel.  I think having a person closer to Pam's age would be better.  It is interesting that since I made that request, the HHA and Pam have had some very productive days working together on number puzzles and stickers.  We will see how this goes.

Sleep disturbances are a very common symptom of Lewy Body Dementia and Pam has this in spades.  For more than a decade, she has had issues with  REM Sleep Disorder.  The normal brain effectively paralyzes arm and leg muscles during REM sleep.  It is known as atonia.  People with REM Sleep Disorder, like Pam, act out their dreams both verbally and with their arms & legs.  It is fun (not) getting whacked in the head in the middle of night while she is dreaming.  Another form of sleep disturbance is excessive daytime sleep.   That basically describes one of Pam's 'bad' days.  Last Sunday was an extreme version of a bad day.  She never had any of her morning or evening meds because I could not keep her awake long enough to take them.  It was almost like she was in a coma.  The next day, Labor Day, she was fine.  She interacted with our grandsons and was conversing normally during dinner.   Often when she has sleep quality issues during the night, she has no memory of any of it the next day.

Pam's loss of the ability to understand time has reared its ugly head yet again.  She had a manicure appoint set up for 8:45am last week.  Pam went to bed around 9 or 9:30pm.  At 10:30pm she was awake and began showering and getting ready for her appointment.  I tried to explain that she needed to go back to bed because her appointment was many hours away.  She just shook her head and continued to get ready.  She sat on the couch for hours in her coat and sunglasses waiting to leave for her appointment.  She finally fell asleep about 3 am.  Needless to say, I got very little sleep that night.  My alarm went off at 7am and I woke her.  She did not remember any of the events from the overnight.  Fortunately her appointment went off without a hitch.

Every morning I am reading the poem hanging by the coffee maker.  The one I included in this blog a few episodes ago.  I need it to continue to remind myself that it is really not Pam that is causing this frustration that I feel.  Our ability to communicate with each other is becoming a real challenge at times.   Sometimes she has no recollection of our previous conversation on the subject.  At other times, she is recalling a conversation that we never actually had.   But more often than not, she is just unable to process the conversation cognitively.  A common example is when I ask her if I can get her anything to eat.  I will mention the things I can get her.  She just stares at me but never actually answers.  She is trying to process the list and decide.  But she just can't do it.  Then twenty minutes later she will ask where her food is.  But you never told me what you wanted.  She just can not evaluate choices. 

Clearly, this problem is my responsibility to work through.  Her damaged brain can not be held accountable.  I am the one accountable.  I am accountable for adapting and changing to fit her needs.  But this is so hard to do, especially for someone like me that tends to be a literal thinker.  It reminds me of a book I bought back in the 1990's entitled You Just Don't Understand by Deborah Tannen.   The book focused on issues of communications between men and women.  It is like were are understanding the words, but our understanding of them is framed in a different context.  But because of the dementia, she is not in control of her frame of reference.  And it is often difficult for me to try and figure out.  And throw into this issue the typical word finding issues of most dementia patients.

On the bright side, we still hug every morning.  I have noticed that she tends to be in a dense fog first thing in the morning and often shortly after dinner.  Some days she does recognize who I am and on others she does not.  At times I don't think she even knows who she is.  If I ask her for her birth date and she just giggles, then I know that she doesn't know.  She has needed more assistance getting dressed lately.    She has problems putting on a coat or her bathrobe.  She can get the first arm in, but the second one is a challenge.  The same is true with shoes and socks.  She is slowly losing the ability to move her legs.  She is also requiring more help getting in or out of the car.  She can get the first leg out, but the second one (left side) is just not cooperating.

As if all of this were not enough, I am having my own health issues.  Suddenly, my body started retaining fluid, known as edema.  There are numerous possible causes but the most common are a medications and heart disease.   In the last few weeks I have had four blood panels, a urine panel, two ultrasounds, a CT scan, and an echo cardiogram.   The good news is that the results of these tests were within normal limits.   The bad news is that all of these tests were all within normal limits This echo was the third in the past two years and it shows no changes in the heart.  Last year I had a stress echo, an EKG, and a cardiac catherization.  They all found my heart to be normal.  So now what.  Something has changed, but all the blood test show heart and kidney function  normal.  I am concerned.  But the doctors don't seem to be because of the blood test results.  That is just adding to my stress level.

1 comment:

  1. Sounds like a good move to get an HHA that might be able to identify more closely with the challenges you are going through. I'm concerned about your feeling of "accountability." That's a heavy burden to bear in the randomness of the universe. Love to you and Pam and the girls.