Saturday, October 01, 2022

We are enjoying the good days...

 I have noticed a change in Pam's progress.  I am seeing less of a decline in the cognitive skills and a significant decline in her physical and motor skills.  This is another indicator to strengthen our belief that she has Lewy Body Dementia (LBD) rather than Alzheimer's (AD).  While both forms of dementia result from the death of brain cells due to the buildup of excess materials in the brain, the proteins involved are different, as are many of the symptoms.

 Without getting too technical, Alzheimer's results from the death of brain cells in the posterior of the brain due to unusual levels of certain proteins.  Scientists don't understand what triggers this but age is the primary risk factor.  This progressive disease causes memory loss, trouble with word-finding, and forgetting the names of people and objects.  As it progresses... confusion, behavioral changes and mood swings occur.

Lewy Body Dementia also results from abnormal protein deposits in the brain.  These deposits form in the area of the brain responsible for thinking and movement.  While there is some memory loss, the patient losses the ability to problem-solve and to process information.  Thinking becomes slowed.  Visual hallucinations and sleep issues are very common.   But it also affects movement.  Symptoms similar to Parkinson's appear.   These include a shuffling walk, slowed body movement, balance issues, and issues regulating body functions.  Some scientist believe that LBD and Parkinson's are related.

The oldest of Pam's symptoms would definitely be the REM Sleep Disorder.   She has talked through and acted out her dreams for at least a decade.  Sadly, we did not understand that it was a symptom.  Looking back over that period, she also had a hallucination experience five or six years ago.  At the time, she was under the treatment of a psychiatrist.  I am a little surprised that he did not pick up on those symptoms.

Delusions and hallucinations are a common symptom with LBD patients.  Pam has been experiencing significant hallucinations for about a year.  They are typically her seeing, hearing, and conversing with someone that is not really here.  Often it is one of her sisters or our daughters.  But it has occasionally been spiders in our bed or squirrels in the bedroom.  While she is still able to take care of her personal functions (bathing, dressing, and eating), the physical symptoms are taking their toll.  She needs help getting up out of the chair or into the car and often times we hold hands as I help her down the hall to another room.

Speaking as the caregiver, dealing with the physical  symptoms is easier.  There is much more emotional stress in dealing with hallucinations or spiders on the bed in the middle of the night.  And as I have mentioned before her inability to process and understand time, especially in the future, is her biggest frustration.  We just switched the clock in the bedroom over to 24-hour time (vs. 12 hour) because she can process appointment times better if we use military time (for ex. thirteen hundred hours vs 1 pm).  It seems to be the am and pm that trips her up.

  A number of good things happened in the last ten days.  First, Pam was able to go out and get her hair cut for the first time in a couple of years.   She is very pleased with her new style.  Also, most of the family did the Walk to End Alzheimer's last weekend.  We all enjoyed the nice day.  Additionally, thanks to some of you, Pam exceeded her fundraising goal by an order of magnitude.  That earned her leader board recognition, a special t-shirt , and a medallion as a Grand Champion!  And a special recognition to my old friend, Nancy Webb, who raised almost $4,500 for the cause.

The unthinkable became the topic of the week for the family and resulted in a family meeting last weekend.  The issue came to me while having a conversation with our eldest daughter.  And the issue is... what happens to Pam if I passed before she does?  Loss of the primary caregiver can be very disruptive for the patient, but even more so for the family that needs to pick up the pieces.   It is a subject that most people don't want to think about.  Beside trying to deal with the grief of the loss of a parent (OK, I assume there will be grief 😏 ) the kids need to keep paying the bills, find all of the documents, file forms with Social Security, and figure out how to take care of their mother.... all the while, taking care of their own families.   There needs to be a plan.  And being an Excel junkie, I pulled together a draft of a spreadsheet that outlines what needs to happen, what decisions need to be made, etc.  I have asked the kids and a couple of knowledgeable friends to take a look and see what might be missing. 

 And lastly, an update on my health.  I was recently reading about the toll that being a caregiver can have.  One study found that dementia caregivers has have a 63% higher mortality rate than non-caregivers of the same age.  And with that thought in mind, I have had regular visits with my cardiologist because my BP has been very erratic.  Changes in meds have not helped.  So in mid-October I will undergo a cardiac catheterization so that he can take measurements and have a look inside the heart and its supply vessels.  If they find nothing unusual, I will be out later that day.  But I fully expect to be an overnight guest of Elliot Hospital.  

Otherwise, life is good.  We still enjoy more good days than bad.  We still enjoy that morning hug every morning.  We try to get her to socialize as much as possible.  Things could be much worse.  We are fortunate.


  1. Thanks for your honesty. Those of us going through the caregivers role get it.

  2. We may not agree on politics, but we are now joined as caregivers.