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?
Monday, June 18, 2012
Friday, June 15, 2012
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.
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.
Thursday, June 14, 2012
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.
Tuesday, June 12, 2012
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.
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.
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