Sunday, November 05, 2023

We've Come A Long Way Baby...

If I have counted correctly, this is a very special edition of the Change the Journey blog.  Why?  

This is blog entry number 100!  

It does not seem possible.  I was someone that hated language arts in high school.  I even failed it in my junior year and had to go to summer school.   And now I am not only writing a lot, but I am writing about thoughts and emotions that are very personal.  The very first blog post was a description of our stay on Prince Edward Island in Canada and a review of one of our favorite places to take the RV, Sebago Lake State Park in Maine.  What started as a travel blog shortly after Christmas in 2019 has been transformed into a journey of dementia blog.  It is funny because a dear friend recently sent me a quotation about how the storm will change you.  The fact that I am still writing this blog and talking about the things I do is evidence that this storm has changed who I am.  I hope that you enjoy blog number 100.

In the last edition, I mentioned that Pam has had a seizure.  We are blessed that we have not had a recurrence.  But there has been a marked degradation in her condition.  My primary observation is that she is thinking more slowly, speaking more slowly and with a weaker voice, and her movements are more unbalanced and slower.  The most alarming thing to me is that her face is almost expressionless.

 Watching Pam have this seizure was traumatic for me.   I gather that her 30 second seizure was on the short side.  The thought of her having another is terrifying.   And to think that they can last three or more minutes.  The only saving grace is that she has no recollection of the seizure.  Actually, she could not remember anything about what happened that day. 

The doctors in the ER blamed one of her medications for the seizure.  I am very skeptical that was the cause of this seizure.  I am no expert, but Pam had been on that medication for about a decade.  Why would it suddenly cause a seizure?  That is one of the questions for the doctor appointments this coming week.  Shortly after getting home from the ER, I messaged both her Primary Care and her Neurologist about the event.  Both called the next day.  I am pretty sure that her Primary contacted the Neurologist and advocated on Pam's behalf.  The result is an extended appointment first thing on Monday morning.  Pam and I have the same Primary Care Provider and I must say that I am very impressed.   She has always been an excellent listener and a strong advocate within the Elliot organization.  She is a young doctor, but always knowledgeable and  well prepared.

Included in the doctors Discharge Orders from Pam's first visit to the hospital, was a request to evaluate Pam for admission to Home Health Care by the Visiting Nurse Association (VNA).   So the very next day we were visited by the RN who gathered all the information.  The Physical Therapist was out the same day.  The next day the Occupational Therapist paid us a visit.  It was during this encounter that Pam had the seizure.  While I welcome the help that VNA may be able to offer, I must say that I am a little skeptical about this process.  And it is not just me.  I have had this conversation with our oldest daughter.  So far the process feels a little invasive and judgemental.  But we will try to keep an open mind and go with the flow.  

 One of Pam's great joys has always been decorating the house for Christmas.  Given the progression of this disease, both on the physical body and on the brain, I suspect that this may be the last Christmas that she is capable of doing that.  I have asked our daughters to give some thought to ways that their boys can work with Gmom to do the decorating.  I  know that she would love to spend the time with them, and I am hoping that it will leave them with some cherished memories.

1 comment:

  1. Happy you've had a less eventful week. It's also great news that you've got a good medical team that is sensitive. Love to you both.