A week or so ago…
I’m at my Dad’s house.
My fingers make tentative taps at the keyboard but I don’t know where to begin. Begin with the now and work backwards? Go back to two years ago and pick up from there?
I should have kept writing back then. It would have solved this current conundrum for me.
We are in the living room.
The tv is on. “The Andy Griffith Show” is on tv. We’d been watching “Blue Bloods,” but I switched over to this because it’s lighter. Less violent.
Dad’s in bed. The hospital bed that was delivered on Monday. Audrey, the cat Dad adopted from the local Animal Rescue League within the past year, is snoozing at his feet. When he was in the hospital last month and then in a nursing home for rehab, my sister and I would stop by the house to take care of Audrey and she would complain loudly and at length about her missing human. When he came home last Friday, she attached herself to him like a burr and refuses to be unstuck from him for very long.
My laptop is on top of a partially done puzzle – one of the Norman Rockwell Saturday Evening Post ones – on an old card table that sags down slightly in the middle.
The room is crowded. A couch along the front wall, below the windows. The tv is in the corner. A wingback chair on either side of the bed, this card table kind of plunked beside the couch, and the piano is behind my chair. A bit crowded, but functional. There are some of my grandmother’s paintings on one wall. Lots of photos of family on the piano, near the fireplace, and on a shelf up on the wall to my left. Lots of…stuff. When my parents bought this house years ago, my mother didn’t want to get rid of anything, so the contents of their much larger home are crowded into this smaller one.
Despite all the familiar things everywhere, sometimes Dad asks when he’s going home. We explain to him that this is his home, that he and mom bought it a while ago. Sometimes he will accept that. Other times he looks skeptical. Suspicious.
Other times he will ask about Mom, or mention her as though she is still alive and out shopping or something. We gently remind him. Sometimes he shakes his head and grunts in annoyance at his own flawed memory. Other times he wrinkles his forehead trying to remember.
It’s been a gradual thing.
That circle of life …it’s been brought home to me over the course of these last couple of years. Not so much with Mom – hers was a different situation. But with Dad, I can see it. Maybe not a circle so much as an arc. Or a mirroring, of sorts.
When my kids were babies, every new thing was remarkable and notable and deserving of a blog post or a letter or email to someone. All those milestones as they progressed and grew and learned and went from helpless to wobbly to upright and forward-moving and determined and independent. I look at my kids every day and (to their annoyance) just stare and marvel at how amazingly capable they are when just yesterday they weren’t even potty trained….
I remember tying little shoes. Helping small arms and legs into clothing. Steadying little bodies as they took shaky steps. Watching carefully, ready to help or catch or protect. I remember amazement and pride in their little accomplishments.
With my Dad, as the months have gone by, it’s been like watching that movie in reverse, sort of. Or, maybe, like walking up a staircase with someone, and now walking back down.
I don’t know what analogy to use.
I have felt odd deja-vu-like moments, when I have helped tie the shoe on his right food – same side as that broken leg from two years ago; it’s stiffer, harder for him to reach all the way to the shoe – and I feel like after I’ve finished the double knot I should be smiling into the face of one of my kids, not my father.
But here we are. Time rumbles along.
When I was still a very new driver, maybe still learning, I remember my Dad picking me up after work and letting me drive home. The first leg of the journey was a dark two-lane road, and I remember panicking as approaching headlights blinded me and I was afraid I might suddenly drive straight into the oncoming vehicle. In his calm, comforting voice he simply said “Just keep your eye on that white line on the right side of the road.” My panic dissolved and I managed to get us home without a crash.
Every time I drive down a two-lane road in the dark, and see headlights coming toward me, I hear Dad talking to me.
He has always been – as I remember my childhood – the epitome of patience. Calm. Unruffled.
Sometimes it would drive me nuts. Sometimes he took too long to respond. Thought too long about what he was about to say. Chose his words too carefully when I thought they should already be locked and loaded and ready to fire, like mine were.
I do not always have his patience, although I have worked hard to cultivate it in myself over the years. But I’m still working on it.
My sister and I are here at his house a lot. Especially now. But even before the two surgeries last month, we were in and out of this house at least three times a day. My sister was making him dinner pretty much every day.
Sometimes when I’d stop here after work, I would feel impatient. I just wanted to get home and be done. I live about half an hour away, and at the end of the work day it seemed like such a long drive. I was fidgety and in a hurry to get going. I felt pulled in two directions, and I thought my family at home needed me there more than Dad needed me here. And at the same time, I felt horrible and guilty and rotten. The bad daughter. Not always. But often.
Anyway, I have been working on patience. He never rushed me, hurried me along, or tried to make a speedy exit. I have been working on changing the pace in my head. I am working on not being mildly irritated when he moves slower or when I need to help him with things that he never needed help with before. My head is adjusting. But it’s strange and new and unsettling at times. He’s the father, I’m the kid. In my mind, anyway. Time likes to switch things up.
Like I said, Dad had two surgeries in April. The first one was planned. Dad has bladder cancer. The tumors have been relatively slow-growing, and when they started interfering with normal plumbing operations, Dad’s urologist would scrape as much out of the tumors and clots as possible. Things would go back to normal for a while, and then when blood started appearing again, we’d schedule another surgery. This was the third or fourth scraping surgery. The days leading up to surgery were kind of rough – in addition to the blood, there was pressure, the feeling of needing to pee but not being able to. And the incontinence, which has been a part of his life for maybe a year now. Or more. I’ve lost track. The couple of nights leading up to surgery, my sister and I took turns sleeping over. Dad was up constantly through the night, shuffling from bed to bathroom and back. Exhausted, uncomfortable, frustrated. When the day of surgery arrived, we were all relieved. Well, a bit annoyed that his surgery time got pushed back to eleven o’clock when he was originally supposed to be first in line, but at least he was IN the hospital and things would start improving again.
I slept at his house the night before surgery. My sister brought him to the hospital and I went to work five minutes away. My sister texted me updates throughout the day, and I planned to go over after work. I would also bring him home the next day. We had it all planned and figured out. Just before noon my sister texted me something about clots and kidneys and tubes. I don’t remember it, but I could probably find it on my phone if I looked. I called her and she filled in what she knew at that point – the tumors in the bladder had been blocking the urine coming from his kidneys, and blood and clots were backing up into the kidneys, and the doctor wanted to put tubes in so his kidneys would drain that way instead of getting slowed by the gunk in his bladder. I left work as quickly as I could and met up with my sister and the doctor, where he described the procedure and really, it was what needed to be done. Blocked kidneys would be bad.
So we got to see Dad briefly before the second surgery. He was sleepy on the gurney, we signed off on the paperwork, and they wheeled him away for round two.
The second surgery – the double nephrostomy – was relatively quick. Dad spent a few days in ICU, hooked up via tubes and wires to machines and bags. He was fidgety. He played with them, pulled on them, set off the alarms and brought nurses in to re-attach or reset whatever he’d been plucking at. For a few nights the nurses had to put mittens on his hands and restrain his arms so he wouldn’t yank things out in his sleep.
Despite the fidgeting, he recovered relatively quickly, at least from a machine and bag standpoint. They wanted to move him into a regular room, but there weren’t any available, so he stayed in ICU but without the intensive care. And then he was moved to a nursing home/rehab facility to build up the strength in his legs again so he could go home.
While we were in the hospital, we were connected with one of the local Hospice/Palliative Care representatives. And now we have Hospice CNAs and a nurse and a volunteer and a couple of social workers on our team. Plus the private CNA who comes three times a week for a couple of hours.
We’re still figuring things out. We empty his nephrostomy bags and take care of his meals and shopping and laundry and some personal care. We can flush the nephrostomy tubes and I’ve changed the dressings see previous post), though usually the Hospice nurse does that. We take turns sleeping over on the couch in the living room. One or the other of us is here most of the time.
And that’s it for now.
Dad’s awake. Gotta fix him some coffee.