Anniversary

It has been approximately four years since my father started dying. Since then it has been a sore throat, a persistent pain that occasionally fades enough to go about my day, to maybe forget that it's there, but with each breath it threatens. And every so often it can't be soothed whatever I do. I am painfully reminded every day that he could die tomorrow, or in two weeks, or in six months, or in two years and it would not be surprising. I would be devastated and adrift, but I would not be surprised.

Of course, had you told me in 2012 that he would live another 4 years I would be aghast. He has outlived every expectation. There is a part of me that wonders if it is a good or bad thing, but most of me knows it is good. He has had 4 more years of time with his grandchildren, he danced with me at my wedding, he has visited California. Some of those years have been better than others, with more or less pain, with more or less cognitive function, with more or less vigor and physical ability.

It is now, when he is back in the hospital, with a viral infection and complications due to congestive heart failure, only partially lucid, that I wonder. When I speak to my mother when she's been woken up five, six, eight times over the previous night and I hear her voice catch on the phone, I wonder.

That being said, his being back in the hospital is not unsurprising. It doesn't feel new. It's well-trod ground. Back again.

Out of reach

I am in Denver for a conference, and I call Mom every day. Daddy had been released to rehab after a trans-aortic valve replacement but is back in the hospital, this time with infection and sepsis, our old friend. She hands him the phone, telling him I'm in Denver and he asks if I've brought my skis - the same joke each day I've been here. He is surprised each day when I tell him it's 85 degrees, warmer than California. He has gotten more belligerent and now less again. He has gotten a lot worse and a little better. He can walk with a walker. Mom just wants him home, so she will stop being woken up by phone calls at 1am, 3am, 5am. So she can sleep more, sleep better. So she can rest. "I just want it to be over" she says, and I know how she feels, even though we don't acknowledge one of the tacit implications of that statement.

We are setting the foundation for going back East. It is too hard to be so far.

Escape

I have little to no desire to do much of anything right now. I have work to go to, and I do, for about three hours a day. No one seems to notice. Everything is getting done that needs to get done, but many of my emails are being sent from my couch. I have been watching a lot of Outlander in the last few days. Outlander has kept me company out here more or less since we moved, and I've both finished the books (feverishly, hungrily) and am more or less caught up on the show (or as much as I can without cable), and I am a little sad not to have it available to me, to immerse in this world I've been lost in for close to the last year (while the last three books took me a month, the first five were more spaced out. This was before I got my priorities in a more appropriate order). Before Outlander it was the All Souls trilogy. I am a little embarassed. Not by my immoderation in consumption - this is nothing new, with respect to many things - but by my choice in reading material. I am a bit of a cultural elitist (ok a lot), as inherited from my mother, and whenever I tell someone I am reading them, I feel like I need to legitimize it, rationalize my enjoyment. They are the definition of my guilty pleasure. It has helped, though, to have an easy read. To have a vivid, engaging, fast-moving read. With vivid, engaging characters (who are played by devastatingly attractive people on television). I alternate with reading essays from Roxanne Gay, who is also super engaging and funny but I feel somewhat more scholarly.

When I didn't match for internship, Downton Abbey was my escape. Also red wine. When I was living apart from my boyfriend, who would go on to become my husband, it was The Hunger Games and Pinterest. I need to find somewhere to go hide, somewhere to get lost.

Again

Congestive heart failure this time. For some reason it feels different. He has been in the hospital since I moved to California, in and out of doctors' offices, but this is A Thing. A Thing That Could Kill Him. There have been a number of Things in the last five years, and every Thing is scary in its own way, but being so far on the other side of the world makes the Thing into someThing else entirely. I'm still trying to nail down the words for it.

We were on the way to the airport, heading back East for my husband's brother's college graduation and my parents' 50th anniversary party, conveniently scheduled for the same weekend. I called my mother to confirm flight numbers and arrival times. 

"We're just getting to the airport now," I said. 

"Oh, where are you going?" she replied. 

"To see you guys," I said, thinking she was being absent minded - maybe she thought we were arriving Wednesday and not Tuesday? 

"But the party is next week!" 

I cried in the airport, both feeling like an idiot and angry and sad we would miss the actual 50th anniversary party, that we again would be the only family members not there. We watched The Voice with my parents that night, after 12 hours of travelling and frantically consuming our first East Coast pizza in months. The next day, in the middle of the celebratory graduation dinner in the City for my brother-in-law, I got a phone call from my mother that Daddy was in the hospital with pneumonia. We abandoned plans to meet up with friends and headed to the suburbs, getting to my parents' house after 1am.  

The next few days proceeded much like every time he has been in the hospital, but leaving was harder. I held his hand more. The medicine he was on to get the fluid out of his lungs was dehydrating; his skin looked like crepe paper, but his hands were strong and soft. I helped scoot him up on the bed when he slid too far down, helped retie the gown after using the restroom, helped clarify things the attending said for my mother, an unspoken acknowledgement from the doctor that he didn't have to dumb things down for us. 

Then we came back to Southern California, and it feels like we exist on a different space-time continuum. I call my mother every day, and while the directives are different (which surgery when and in what order), the tone is the same. It's rough, we're getting through it, we love you, here, say hi to your dad. I talk to my brothers who give me more information, in more serious voices, with more dire outlooks. I talk to my friends, and no one knows quite what to say. I talk to my husband and he hugs me while I cry. 

Reconnecting

Two and a half years later. He is still alive. He has seen me graduate. He has walked me down the aisle, danced with me at my wedding. He has been back in the hospital four times, twice for infections, once for a fall and a broken nose, once to fix the aneurysm in his stomach. He is, as my mother insists is diagnostically indicative, pink. Physically he's still struggling; walking with a walker or a cane, but these are not anomalies for an 82-year-old man. Mentally he's not back to baseline either - forgets things, loses track of the conversation - but he believes he's at 90-95%, which I'm coming to think is more a good thing than a bad thing. His belief that he's doing fine is probably keeping him alive at this point, and I'm not about to burst that bubble.

I am living across the country now,  in a neuroscience postdoctoral fellowship. We go back East this week for Thanksgiving. While I managed to have seen my parents three times this year - in April to visit, in June for my graduation, over Labor Day because I was in town for a friend's wedding - I feel like I am on the outside. I am so completely removed being on the West Coast. Even when we were a two-hour drive away I was in it, I was there. But now with a three hour time difference, a whole day of travelling between us, I am out of the loop. It scares me sometimes, how far away we are. I feel like a portion of my life is on hold until we go back.

Support

Nursing came through today, according to mom - three times a week they'll come by for vitals, in-home occupational and physical therapy and all covered by Medicare huzzah!

I can't tell whether I'm being completely pessimistic or realistic or clinical or callous anymore. Alone, I'm eight years old and terrified that Daddy isn't the same and never will be the same and who knows how long he'll be here. With my family, I've been charged with Knowing Things. Knowing what to expect, what to look for, why he's doing something or not doing something else or what the doctor meant when she said that. I turn into a consultant. And I honestly don't feel like I really know fuck-all about what's going on, apart from the definitions of confabulation and apraxia. I'm trying to read scholarly journals occasionally, about delirium and generally they say that it's a high predictor of mortality in 6 months, institutionalization, dementia etc, but of course my school doesn't have access to these journals so I can't find out what their population was (were they independent beforehand? what were the medical precursors? average age?) or how strong a predictor of poor prognosis delirium is (are we talking 5% of the variance or 50%? what else was in the model?).

But I feel like I can't talk about it as much. I don't want to ruin anyone's day or be a huge bummer. I don't want to be the one raining on everyone else's parade if Daddy's a little more lucid for a couple days in a row. But if I'm supposed to Know Things, am I not supposed to Say Things?

First night

This is the very first night in more than three months that he has slept in his own bed, and damnit is he annoying about it. You'd think it wasn't as pleasant a change from a hospital bed, the way he bitches about getting in it and where the wheel chair should go and not there, no the wheels are not going in the right direction and why won't you listen to me? For crying out loud.

It's tough. We've been prepared for this - that the end of the day, especially one in which he would be doing a lot, getting worn out, would be much harder than earlier in the day. That his lucidity would decline as the day went on, and also as the months etc went on. What a bitch this is.

He weighs less than I do now, which for some reason I find to be particularly upsetting, but that is more my neuroses than it is indicative of his state. He looks thin. Mom looks thin. They both look exhausted.

Limbo

He goes home tomorrow. They leave the rehab center, go to the airport and fly to Connecticut. I feel like I should be excited but I don't trust it. I don't trust that he won't go back the hospital, that there won't be setbacks in his recovery, that he's going to get much better before he gets much worse. There are too many what-ifs, too many maybes, too many unknowns.

Background and Significance

I was visiting my parents in Florida for a weekend with friends in March, taking advantage of free lodging, a guaranteed meal or two paid for, and easy access to sun and sand and seventy-five degree weather. On Friday night he was my father; older and somewhat of a curmudgeon but generally charming and engaging despite a minor shoulder injury. Saturday he couldn’t get out of bed without my mother supporting him. By midnight he was notably disoriented and confused and by the time the ambulance came he was only reciting number sequences and moaning in pain. Throughout Sunday as my mother ferried back and forth from the hospital I offered to cancel my flight home, to stay and support her while Daddy was laid up. She denied me twice, relenting finally when a doctor suggested he may have had a stroke. I stayed for ten days.

It turned out to be massive septic shock. An infection in his shoulder that entered the bloodstream. Renal failure. Delirium. Dehydration. Dangerously low blood pressure. That first night in the hospital he was slumped over, mouth agape and eyes unfocused. It was terrifying.

 He began to steadily improve; a little more recognition here, a little more range of motion there. He loved to give people a hard time, to joke with the doctors, flirt with the nurses – especially the blonde ones – and make us roll our eyes. When my brother arrived one morning his greeting was “Did you sleep in that shirt?” He was released to rehabilitation hospitals and reentered the hospital three times before he was cleared to go home to Connecticut. At each subsequent infection people kept asking if we wanted to ‘let him go,’ unaware that weeks earlier he had been driving, managing his own business, taking the boat out to go fishing on his own. He was completely independent, until he wasn’t. At seventy-eight, apparently this is remarkable. But it’s just the way he was. The way he is.

The prognosis is not good, but it is not acutely bad. Daddy's surgeon says his cognitive ability will steadily decline, though not how fast or from what point we'll be starting. He says eventually Daddy will have to be in a continuing care facility, but not how soon. He says the infections will continue to come back until he can no longer withstand the havoc the wreak on his body. But we don't know how often, or how severely, or anything, really.

There are many frustrating aspects to this experience, but one of the most for me is that there is no specific illness, no name, no foundation, no community, no walkathon. He got an infection, and then another one and another one. He gets confused sometimes, and agitated. That's it. But that is what will kill him.

I am a clinical psychology graduate student. My job, my career, my life is figuring out how to make people manage problems better, feel fulfilled, survive painful experiences. And I have no idea how to make this better for him. For my mother. For my brothers. For myself. My coping skill has been scientific; I read scholarly articles on the consequences of delirium, treatment for caregivers of those with dementia, and am comforted by knowing. But I also know that my father may not see me graduate with a PhD, he may not walk me down the aisle, he will likely never meet my children. I am twenty-nine years old.