Epistle 7: Knocking on Heaven’s Door
October 23, 2016
So here again I sit sorrowing with you at the deathbed of one of my parents. Henry Valentine Lukas lies before me, having lost 40 pounds since January. He has moved from a bed-to-chair-to-bathroom life to a bed-to-bathroom life during this time.
He moves very slowly with his walker when he gets up, no longer wears pants, and eats but one meal a day…
Some nights are particularly hard; up to the bathroom frequently each time some part of his nervous system signals that he needs to “poop” or pee. We have reached the part of the reserve engineering in dying where control over one’s bladder and bowel is intermittent.
While his overall cognitive capacities have eroded (he doesn’t remember names, cannot form much thought), he still loves to hear about his family members and perhaps ponders the “big question.” His explanation for what will happen to us is, “We are all balls of energy which will upon death be gathered in a big stream of balls whirling around in the universe…”
The care giving team which attends to him is a group of loving people who have showed up each with their own skills. I come down from the Bay Area to Los Angeles every week or two to help, direct, and supplement their efforts.
After quite a bit or wrangling, I got the Kaiser palliative care team on board at the end of July. There I was at 3:00 p.m., talking with doctors, pleading with them to put him in hospice, and then, a few hours later, orchestrating weekend events for Stephen a few miles away!
The dilemma for the medical people is that Hank is not dying of anything! At least not of any medical necessity criterion! He has no disease process, per se...only old age with a declining lower brain stem, which can be called dementia. But not enough dementia to qualify for hospice!
Now, after 60 days of being on “palliative care probation,” he is no longer getting home visits, because he has not declined and there are no symptoms to cover up. He will be on “outpatient” - with phone-in appointments! Well, my goal has been and will continue to be that Hank doesn’t have to leave his home of 40 years.
I had wanted him in hospice so they would pay for some spiritual care. Once we got close to the end, the person I hoped who would minster to him declined the offer because of possible bed bugs. I found another person who was game - but they went AWOL on me…so I was going to have to wing it.
He awoke today for the first time with pain of any sort. The left part of his chest is in pain when he moves too fast or when he breathes too deeply. It takes both the caregiver and me to move him, help him pee in the bed pan, and position him in bed.
I call the Kaiser team and begin giving him some Tylenol. He is resting now.
What is the pain? A strain from the workout he had on Friday or too much reaching to get his water, etc. on his food table? Or could it be some cancer? Does it matter?
For a couple of decades now, whenever I have said good-bye to a parent, I have approached it as if it might be the last time. What was once a mostly cognitive exercise is now a full body experience.
Sometimes I will hold his hand and feel the energy pull back into his body as he shakes the shake of someone falling asleep. His breathing will shift and change over a period of time as he falls asleep.
Other times during a conversation, his eyes began to droop - he can no longer stay awake. He says, ”I think I am leaving you now.” Tears roll down our faces, I kiss him, and walk out of the room.
I had made airline reservations for one- or two-night visits every week through November. As I sit here now, that may all change. Working on extending those times into three- to four-day visits may come sooner than later.
Thank you
Brian