Is there life after giving up?....

The last two weeks have been absolutely crazy.  Being the primary caregiver for a loved one with a significant medical problem may not always be physically demanding, but the stress and the emotional toll as they decline can be harmful to your own health.   I am so grateful for family and friends that have gone out of their way to support us.  And that was really put to the test in the past ten days.  But before I explain more, I want to talk about the Help Gmom Decorate for Christmas event that was planned for Saturday, December 2nd.  My intuition has been telling me that this might be the last Christmas that Pam will be able to understand and enjoy with family.  Christmas has always been Pam's favorite holiday and she has always done an amazing job decorating the house for the holiday.  The Lewy Body is making it harder and harder for her to motivate around, so I thought that this would be a fun activity that would allow Gmom and all five grandson to work together and get the decorating done.

 

Just as we had with Thanksgiving, the family was all here (except me... more later) but Pam was mostly absent.  The crock pot hot chocolate and snacks were enjoyed by all.  And they all pitched in and got the decorating done.  But Pam has more and more bad days lately.  Some of which she can just not stay awake.  And like Thanksgiving, she slept through most of this event.  We planned for two weeks, but you just can't predict what kind of day she will be having.   She did get to participate, just not as planned.  The real core of Pam's Christmas decorations is her Santa collection.  We are now somewhere in excess of twenty  Santa's.  Each year she gets a few new ones, and this year broke the height barrier with two three-foot tall Santa's.  These things are even named in the will.

 

 

 

I wish I could say that our family is going to enjoy this holiday season, but I am afraid not.  The Lewy Bodies just keep marching through her brain, leaving dead brain cells in their wake.  When Pam had the DATscan, they clearly saw a deficit on the left side.  The latest symptom is her speech.  The Broca area in the left hemisphere controls speech formation.  Her's is losing the battle with the Lewy Bodies.  Most of the time, she will say sounds, that are either gibberish or words with no meaning to the current context.  She does not even realize that we do not understand.  To her, all is OK.

A very common symptom of Lewy Body Dementia  is excessive daytime sleep.  It is not uncommon for Pam to sleep all day and then have a rough night of up and down.  Pam's biological clock is just plain screwed!  Another new trait is her eyes.  She often sits there in front of the TV with her eyes closed.  She will get up and shuffle to the bathroom, with her eyes closed.  

Several people, including her PCP have recently mentioned hospice.  Personally, I think it is too early for that.  But I will admit that initiating hospice care, whether at-home or in a facility will be a devastating point for me in this journey.  It will be the equivalent of throwing up the white flag.  Declaring defeat!  Giving up.  I don't want that day to come.   Intellectually, I know that this affliction is progressive and fatal.  But with every other cell in my body, I want to have as much time with her as I can.  Who am I going to make blueberry muffins  for at 1:30 am?

So I mentioned earlier that I was not in attendance for the Help Gmom Decorate for Christmas  event.  The reason was that I was a guest of The Elliot Hospital for a week with a significant infection in my left arm.  It went from a small area just behind the elbow to consuming my entire left arm up to the shoulder in about 48 hours!  My arm looked like The Hulk.  It took a combination of three IV antibiotics administered every two to three hours for a week.  Our oldest daughter did an outstanding job of herding cats in order to see that Pam had 24 hour coverage.  I am extremely grateful to several family friends, Pam's sister, Paula, and our daughters for their sacrifices to insure Pam's safety and comfort.  And I don't want to leave out our caregivers from Home Instead.  I am not yet back to normal.   The orthopedic surgeon says that it will take a month to heal and I am still finishing a ten-day supply of oral antibiotics.

The problem with being in the hospital was that I felt fine.  I was not in any pain and I maintained both the sense of touch and a pulse in the left arm.  I was just very bored.   Not to mention that this facility is always full.  It made no sense to me to consume a bed when all I really needed was access to IV meds.

The bottom line is that caregiver must take their own health just as seriously as that of their loved one.  A lot of people sacrificed to do my job while I was in the hospital.  And if I were in there much longer, someone would have had to make sure that all of the bills got paid, prescriptions filled, etc.  So it is just as much about me as it is about Pam.  It is taking time to learn this.