I know it has been a while since I wrote — more on that later. For now, I wanted to relay a conversation I had with my father today.
Quick note to get everyone up to speed on plot: about 6 weeks ago, my dad started acting in a way that I most charitably could describe as erratic. He started forgetting to take medication, which for him is very unusual. Or it was anyway. He started being borderline abusive to the team helping to take care of him. And he started arguing medical results with his doctor. In early June, I was in Atlanta on a work trip and I’d heard that he had refused hospitalization after his physician had found his kidney numbers plummeting. At the time I understood his viewpoint because once in the hospital system in America, all bets are off, and really, what could do they do anyway? More tests?
Since then, here is the sequence: another doctor appointment, a week-long hospitalization over July 4th for severe edema and CHF, my father refusing enough tests that they booted him from the hospital, a terminal diagnosis with a one-month time frame, a last-minute scramble to move his apartment to assisted living, hospice sign-up, a visit from my brother, firing the original VNA and replacing them with another that actually returns my phone calls, and most of all, a highly diminished quality of life. Really, the bottom fell out.
On that last point: my dad until 6 weeks ago could shuffle around his place and get himself to his favorite spots. The desk where his iPad lived. His reclining motorized chair. The stove which he never lit but on which he ate everything. His refrigerator which housed his Diet Coke. The living room table where occasionally he would take a meal. His scooter which he would use once a week to get his mail and terrorize the other residents. The bed that he and my mother probably bought in Cleveland in the early 1960’s where he slept every night.
The picture I’ve shown is his old living room — now empty.
That world is over now. Even that bed has about 2 more days to go before it’s replaced with a hospital bed because he can’t get out of the one he has and it’s too hard for the staff to reach down to where he normally is. He can barely move. He can see the Diet Coke on the nightstand, but can’t quite reach it. It is Tantalus, come to life.
Today I sat with him on that bed, maybe for the last time. I used to sit with him at his desk, but now usually he is half asleep in a wheelchair or in bed. Recently he has been having nightmares where my mother visits him and tells him about everything he has done wrong. How he was too cheap to visit his grandchildren in California, how his English should be better, how he should have been a better husband and father. Then he looked up at me with moist eyes — and I mean up, because he was laying down and I was sitting – and he told me that he was trying to be a good boy.
In a way this broke my heart. My dad was known for many things as a father but reassurance was not among them. I can see him turning the voice that he employed on my brother and me on himself and unlike the two of us, he doesn’t have well-developed defenses. Boys who grew up 80 years ago did not develop those kinds of defenses against their fathers the way that those of us reared in the Reagan era did. It also broke my heart a bit because there is some part of him that knows that although he has cheated death so many times — so many times — the end is coming soon.
But then, I know that already. Soon might be a week, or a month, or 3 months. That part I am almost ready for.
So over the past few weeks, it has made me think about the last 4 years and all the things I did right, and all the things I did wrong. I made a lot of mistakes. And yet — I know I did the best I could. There is really nothing more I could have done while still being the Sandwiched Man and keeping the rest of the plates spinning. I had a lot of plates going, still do.
I think that is true for many of us. My father wasn’t raised to be the kind of father that I try to be. Being a husband and father and son and friend and volunteer and breadwinner and also being oneself is hard. Being Sandwiched is hard. It might be the hardest thing.
Hospice can help him with the physical symptoms that are about to come his way. Kidney failure is kind – it’s a sleepy end. Already it has begun to lay its fingers on him; the insomnia that he complained about 6 weeks ago was actually narcolepsy caused during the day that rising creatinine levels. It’s sleep, and it’s natural, and nightmares aside, it is peaceful. Congestive heart failure is less kind. I can’t solve that.
What I tried to do and hope I can do is help ease his guilt, and keep telling him what I did today. Which was not about being a “good boy”. I don’t even know what that means, and I know for myself now that striving for it implies that there is an alternative to avoid. It’s simple: you did the best you could. The best you could. That’s enough.
It’s also the best I can do. I’m OK with this for myself now regardless of what comes next, so hope I can get this to be OK for him too.