Tuesday, May 02, 2023

Emotionally Catchy Title Missing....

The one thing that this dementia journey has done is to raise my awareness of my own emotions.  They were always there, but I kept them subdued and very private.  I am not sure why.  It could have been a defense mechanism.  Maybe I saw them as a weakness or vulnerability.  Maybe that's how boys were raised in the 1960's.  I just don't know.  I generally avoided the touchy-feely situations.   I once told my boss that "it is all about the data, and emotion is just one more piece of data".  But what I know now is that I am flooded with them and sometimes I struggle with that.

I well up with tears when I watch Pam carrying on a conversation with someone that is not there.  I struggle because there is nothing I can do to help.  Those hallucinations are her reality.   Just as bad are the days when she sits on the couch with her jaw hanging and a haunting blank stare on her face as This Old House repeats the episode for the 50th time.  Or like yesterday, when she was standing at the kitchen sink frustrated that she couldn't remember how to turn the water on.  Often it is just sorrow that she has to go through it.   At other times I am grieving.  I am grieving because we understand the end point of this journey.  Grieving because after fifty-one years together, I do not even want to think about being alone.  The reality is that this outcome could have happened even without the dementia.  My mind understands that, but for now, my emotions are focused on the toll that the dementia takes.

And sometimes I am mourning my own losses.  I am the one that had the Bucket List of people and places that we (I) wanted to visit on our two-year grand RV adventure.  I had done most of the planning.  Given my age, by the time that the dementia takes it's final toll, I will be too old to be driving a 16,000 pound vehicle around the country alone.  I am grieving over never getting to see Cathedral Valley or Arches National Park, or the flatbed Ford on the corner in Winslow, Arizona.  When I am agonizing over these losses, am I somehow depriving her of anything?  In some ways this is reminiscent of the passing of my mother.  A few weeks before we were married, my mother passed in her sleep.  Oddly, Pam and I had both called in sick that day.... sort of a mental health day.   Shortly after noon, my father called us with the news.   Emotionally, I felt between a rock and hard place.  Was I to grieve over the loss of my mother or was I supposed to be excited and supportive as Pam and I were trying to plan the details of our wedding?

The caregiver support group that I joined over a year ago has been very helpful.   Not just the insight or advice from others in the group, all of whom know exactly what you are dealing with.   Every question or situation is met without any judgement, only an effort to seek the best solutions.  It has become a supportive brotherhood.   At the same time, it has triggered overwhelming emotions within me.  When two members made the very difficult, yet very appropriate decision to move their loved one out of the home and into a memory care facility, I was struck with a lot of negative emotions.  Our family has decided that we were going to care for Pam at home until the end.  For some reason, my mind has equated moving her to a memory care facility with giving up the battle because the end is at hand.  In reality, that is far from the case.  Could I ever handle that situation with the calm and steadfastness of purpose that they appeared to?  Recently one cohort lost his loved one unexpectedly.  I was immediately overwhelmed emotionally, even though I had never met her.  These events are triggering an emotional side of me that has been mostly unfamiliar.

 The experts call this anticipatory grief, and apparently it is fairly common.  We understand what the destination is at the end of this journey and we are grieving about our loss.... before it happens.  It is often expressed as anger   Angry that you are losing a loved one or angry about the changes that will affect you because of the impending loss.  Surprisingly, that is the one emotion I have not felt.  Maybe it is because I am a pragmatist.   Without a name and face to attach it to, it just feels that anger seems misplaced.  Inanimate objects could care less about your anger.  I have just not felt any anger about Pam's situation (or mine).... mostly just sorrow.  I was supposed to protect her and I couldn’t.

But my world is not all raging grief.  I have much to be thankful for, even when Pam is having a very bad day.  First of all, I have outlived three of my younger siblings.  While I have my own health issues, I can lead a pretty normal life for an old guy.  Also, it is common for dementia patients to exhibit a lot of behavioral issues, like anger, confrontation, deep depression, loss of inhibitions, and compulsive behaviors.  Yet I have not seen any of this with Pam.  She is still the calm, caring person she has always been.  And she can still take care of most of her daily needs like eating, bathroom, and showers.  We have a place to live and food, etc.  We still get to hug every day and she still knows who I am ... although she regularly talks about me in the third-person.  A lot to be thankful for. 


1 comment:

  1. The "anticipatory grief" comment struck me. I can identify. Thanks and keep writing, Cuz. Much love to you both.