During the first of the week, Dad's mental state got progressively worse (from the encephalopathy, the toxins in his body). Wednesday his renal (kidney) function was failing. Wednesday night, we made a trip to Boston.
Thursday, we had the conversation with the attending doctor- Dad's not getting better. He's in fact getting worse. He has not responded to any of the treatments since his he was admitted in Bangor on June 1st. He's not responded to any of the new medications they've been giving him at Mass General.
So then there were three choices-
-Remain there at Mass General or transfer to a closer hospital, and continue giving various medications to "treat" the diseases and prolong life.
-Get him to a hospital closer to home and initiate palliative care.
("Palliative care" is similar to hospice care, but is available to people in all stages of disease. It takes place in a hospital or nursing home, and treatment is geared towards relieving symptoms from chronic disease, rather than providing medicines that actually cure the disease. So basically, ceasing all antibiotics, steroids, and other various meds that supposedly support the liver and kidneys and heart, and strictly provide comfort care).
-Take him home and initiate Hospice care.
Mom, Sharla, and I are the trying to make these decisions, with the support and guidance of our significant others, the medical team, friends, family, pastors, etc... And of course, all while trying to focus on "what Dad would want"...
We all know what Dad would want.
And yet, it's never that simple.
Mom and I are still in a bit of denial.
Well, I guess I can't speak for anyone else, so I'll just speak for me.
I'm in denial. I've dreamt these last three nights that Dad was in Bangor and was getting better. I keep hoping to see his labs trend upwards instead of continuing to spiral down. I keep waiting to see if he'll look any better when I go into the room. I'm waiting for a miracle. I desperately want a miracle. I don't pray. I'm spiritual, but not a christian. It's very difficult for me to believe in things that aren't tangible.
I asked God to save my Dad, and he hasn't.
(Please don't give me any advice on why God has decided to take him, or it being his time, or any of that. I respect and appreciate your beliefs. But I'm losing my Dad, and right now I would prefer not to hear them.)
Anyway, I digress...
I know what Dad would want.
But there was this one conversation I was privy to in Boston last week.. (I mentioned that conversation in an earlier blog)... When the social worker came in and talked to him, during one of his infrequent and brief moments of lucidity... Where he expressed the will to live, almost desperately, wanting to change, wanting to be able to do the things he loved again... as if he was changing his mind... After having given up all these years and using alcohol to leave this world, suddenly, he knew it was coming, and wanted it to be different. And we cried.
Somehow it seems that this all would be easier if he would have said something different during that conversation. If he had only said- I want to go, or, I am ready, or, I knew this was coming.. or something.
But I suppose, many people facing the end seem to change their minds in the last moments...
So anyway...
Now we decide whether or not to leave his medical treatment status quo- continue providing all the meds he was getting this entire time... The albumin, the octreotide, antibiotics, pentoxifylline, lactulose, heparin, pain meds (and the list goes on and on and on)... all these medications that support kidney and liver function, heart function, reduce swelling in the brain, reduce toxins in the body, etc, etc, etc...
Or, discontinue the clinical care and initiate "palliative care"... Just provide him with some pain medication, make him comfortable, and allow the body to decide it's natural progression.
At this time, he is still on the medical protocol that he was in Boston, receiving all the various medications. They've also started a very slow and minimal dose morphine drip, to relieve his pain. He is asleep basically most of the time. But he was asleep most of the time before the morphine drip. The doctors tell us that we can expect to see that as the progression continues. That he will just sleep.
The three of us have to sit and talk now that Dad is home.
If we initiate palliative care right away, the hospital will probably only keep him for a week or two, then he will move to a nursing facility.
And honestly, clinical care OR palliative care, we don't know how long we have. It could be days or weeks. No one knows.
Although statistically, there is a 28 day mortality rate (from time of admission) for those with serious (alcohol related) liver and kidney disease, like Dad.
I see my Dad. I really do.
I see his almost complete mental and physical deterioration.
But I still see him, at my wedding, at Christmas, mowing his lawn, cruising in his jeep, fixing this or that... And I know I'll always see him like that. I'll always have that.
But I'm not ready for this.
Not that anyone is ever ready for losing a parent, or any loved one for that matter... And it doesn't make a damn bit of difference that we all "knew it was coming". Not a goddamn bit of difference that I watched him from next door, rapidly deteriorating, slowly killing himself.
I can't say goodbye to my Dad.
I'm not ready.