Caregiver Blues

His eyes flutter open and dart around the room, looking for something familiar.  I am at his side.  “It’s ok Daddy, I’m right here.”  He looks at me with panic, then confusion and then sadness.  “Where am I?  Why have they not moved me to a regular room?  How long does it take?”  I tell him that the rooms on the main floor are filled, he is not moving, he has to stay put for the time being.  We are in the Step Down Unit (SDU) of the VA hospital in Salem, Virginia.  Since September he has been in the hospital three times, totaling thirty-one days.  I have answered this same series of questions every few minutes for about three hours.  Today was a bad day.  A very bad day.  After his heart cath, everything seemed ok.  But into the night (and after I left for the hotel), he woke up angry.  He was combative with the nurses who gave him Ambien to help him get back to sleep.  I believe that he is having a reaction to the anesthesia used for the heart catheterization along with coming off of the Ambien.  The man that I am tending to is not my Father.  It is as if we are in a sci-fi reality where some alien has replaced him with a pod person from Mars.  It looks like Daddy, but acts the polar opposite.  In a moment of clarity, I tell him that I think he is having a reaction to the anesthesia and his response: “Michael Jackson syndrome?”  I chuckle, it is moments like this where “he” reaches through the cloudiness and into the present, that I look forward to because, well quite frankly, the other guy scares me and I am not a fan.

Flash forward to today.  I am sitting in my hotel room waiting on a call from the SDU nurse attending to him to let me know that he is back in the room after his nuclear heart scan. The heart cath showed that his Left Anterior Descending Artery LAD is completely blocked around a third of the way into the vessel.  The cardiologist (a nice Hungarian), did his best to tap the wire through but it was impenetrable.  They noted during the procedure that a collateral blood vessel had formed to create a “natural” bypass and it was his body’s way of trying to compensate the blood flow that had been impeded by the blockage.  This blood vessel makes it seem that the blockage has been here for some time, possibly years. Because this blockage could have occurred some time ago, it is a general concern that the muscle affected by the artery may be dead.  The nuclear heart scan will let us know if the area is dead or viable and whether or not a bypass would make a difference.  Never in my life would I ever have thought that I would pray that my Dad needed a coronary artery bypass graft (CABG – nicknamed cabbage).  With a bypass, they can open blood flow back up to the affected area of the heart in hopes that it “springs back to life”.  If, in fact, the heart muscle (that has been deprived for what appears to be a great amount of time) is dead, that would mean a lower quality of life for Dad involving a constant manipulation of meds to keep his stats (heart rate, blood sugar, kidney function, fluid retention) at acceptable rates.  They would have to consider an Implantable Defibrillator because it will be a matter of “when”, not “if”, his heart will stop beating due to this medical issue.

Sigh.  Pause.  Sigh again.  I keep thinking to myself: “Ok, this is my limit.  I can bear no more bad news.  I cannot tolerate one more issue.”  And then, when I see my Dad panic or worry, I search deeper and find just a little more strength to put on my brave face and to tell him not to worry because “I’m not”.  He has seen me tear up only twice and I fought hard to keep those tears at bay, until I was alone later and able to weep freely without fear of causing him distress.  Once, on a brief return home, I was kneeling before him as he sat on the edge of the bed.  I had just put his socks on and was working with him to get sweat pants on as well.  He burst into tears and said, “Here you are getting me dressed Chelle.  How did I get here?  I cannot take this.”  I could not look up from his pants legs for fear of tears spilling.  I continued working with his feet, getting them into the legs of his pants and then putting a shoulder into his armpit to help him up and slide the pants up to his waist.  Those few seconds allowed me to choke back the tears and as he sat back on the edge of the bed, I took his hands and looked him directly in the eye and reminded him about when my back went out and I was unable to even get out of the recliner.  How he broke into my house through the living room window and helped me get dressed in warmer clothes and then later made me sleep in Ma’s old bedroom so he could make sure I didn’t have to fix my dinner and that I was comfortable.  “It’s just what we do for each other Daddy.  If I were sitting on the edge of this bed, you would kneel before me and help me with my socks.  Why would I not do the same for you?”  Yesterday, I was not as successful in staving off my tears.  During one of his “coming awake” moments he looked at me casually and said: “Where is Precious?”  I walked to the edge of the bed and said:  “Daddy, Precious Pup died over twenty-seven years ago.”  He began to wail as if this was news to him and then when he came more “present” he continued to wail and ask “What’s wrong with me Chelle?  This is so wrong.”

Everyone keeps reassuring me that I am brave and strong and that Daddy is in good hands.  But, as I sit here with tears splashing my keyboards I feel like a coward, I am scared to death.  With an exception of a few days, I have not been out of my Dad’s reach for this entire journey that started in August. I have been there for the blood draws, the xrays, the umpteenth diagnosis of yet another ailment, the cath, and now the nuclear heart scan.  This is the big one, it will determine how my Dad lives the rest of his life.  I am in “fight or flight” mode and every ounce of me wants to flee.  And ever so often the “fight” kicks in and I bitch at myself for feeling defeated.  I am emotionally drained yet determined to see this through, no matter the conclusion.

Thank you to everyone.  Your support, your kind words, your dark-humorous texts, your long talks on the phone to divert my attention from the apparent – it has all made such a horrible circumstance more bearable.

Although I have had no phone call, it has been over two hours.  I will head back to the hospital now to see where we stand and whether or not he is close to wrapping up yet another test (this test happens in two phases, this morning and tomorrow morning and each part can take up to three-ish hours).

To my friends in NY/NJ – although my heart is full of anguish over my Dad’s health, it still pangs at the thought of what you guys are going through.  I love you all.  Be brave, stay dry and know that even though I am miles away my heart is right there with you.

Ciao

2 replies »

  1. I love you. Even though I am thousands of miles away, my heart and thoughts are with you even, (okay, especially) the inappropriate ones. xoxo

  2. Erin – you will never realize just how much I appreciate your constant presence through all of this. Being able to shoot off my irreverent texts to you without fear of judgement and receiving the encouragement I have from you – it helps balance the situations I encounter. You have played a huge part in the retention of my sanity. I love you!!!

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