We've known what was coming since February of 2008. We began to prepare, then prepared, then reviewed our preparations, then waited. And waited. And waited.
Living at home with my ailing father, whose health has crept along a continuum like wind teasing a measuring gauge, became normalized. I lived in the suburbs, bussed to campus, bussed to an unpaid internship, slowly built a social life and came home at night to spend time with my father and brother. In the last two months, I spent less time at work and more time at home. Then I started to forgo socializing, because dad didn't want to be left alone. Then it ate into school.
The last month was bad. Really bad. It caught up with him quickly - the waiting had ended, and then we just had to experience. One night I was nearly in tears: dad was confused, and obviously in pain. He woke up from fitful couple-minute naps, sat up, stood up, often started walking. But he didn't know WHERE he was walking. His bedroom had become cramped. His bed, the "Big Bed" from our childhood, sat in the middle of the room. Our well-intentioned but thoughtless aunt had arranged for a hospital bed to be delivered, and it took up the remaining space at the foot of the Big Bed. An oxygen machine sat wedged in between the Big Bed and the wall. He would start walking, but didn't know where to. Eventually I would guided him back to bed, and he would lie down for a couple more minutes fitful sleep. After two hours of this, he fell into a deeper sleep: the creases in his forehead disappeared, and I knew my opportunity for a bit of sleep arrived. He was tucked into the Big Bed, and I crawled under the blankets in the hospital bed. As exhaustion toyed with my Sleep Switch I played with peacefulness; anxiety drained from me for the first time all evening. And I realized that the situation was temporary. Yes, I had spent the last two nights up with dad. But it wouldn't last long. The nights were long, but the days would pass quickly, and soon there wouldn't be any more. I just needed to take a deep breath. We needed to take a deep breath.
We held his memorial service today. A gorgeous Saturday in Minnesota. A perfect reception hall in this suburb's brand-new hotel. Friends from every walk of life: his aging cousin from Massachusetts; our ophthalmologist of nearly 20 years; two of his bosses; dear family friends; my high school friends; an ex-boyfriend, and a current interest; his attorney; my co-workers. They ate and drank and toasted, and we watched the slide show put together by my aunt courtesy of iPhoto. On the way home, my car was full of gorgeous flowers, and a dozen envelopes labeled "The [Dad's name] family," "The [Mom's name] family," or "The Mom hyphen Dad's name family," depending on which of us they knew best.
From the memorial we had dinner, and then brought the video-game playing generation back to my house for our traditional Saturday stab at Rock Band, Venture Brothers and Leinenkugel appreciation. My dad loved the Saturday Gatherings. They made him feel young, he said week after week. I have no doubt they did, and the infusion of youth, foolishness, hormones and idealism kept his mind sharp, and off the topic of cancer.
Monday, mom leaves to go back to the west coast, back to my stepfather and her job. My brother might join her for a change of scenery. Sister will return to her urban apartment and the myriad of gentlemen begging for her attention. And I'll be in this house. I think that's when it will sink in.
I scanned through every photo on my computer this week for slide show fodder. It was magnificently cathartic; I was awash in photos of my dad as a healthy, able-bodied man, rather than the emaciated, confused one I saw every day of the last month. His eyes used to be bright and purposeful, his face round.
Trouble is, watching those photos of my shiny-eyed father all afternoon, photos in which he granted the camera a raw, unexpected smile made it that much harder to believe he's gone. He napped away most of his last month. What's to say he's not just napping now? This is really, really weird, and it's going to get weirder before it becomes normalized.
Saturday, November 7, 2009
Wednesday, October 21, 2009
Beginning at the end
As I sit down in front of my computer tonight, I'm frustrated, anxiety-wrought and utterly, utterly exhausted. I just thought to myself "Damn, tonight's been the hardest night yet."
Then I realize that I had that exact thought that last Saturday night, and the Friday night before it. And about three times in September.
Not to say that each of those statements isn't true. I'm certain that tonight WAS more difficult than last Saturday night, and Saturday was definitely more difficult than Friday. As this thing progresses, it gets harder and harder to deal with.
I'm starting this blog as my father enters the last stages of his final stage of lung cancer. Ten points if you can name this song and artist without googling it: Every new beginning comes from some other beginning's end. Or, as my dad likes to say, He who is not busy being born is busy dying.
He said that to me the night of February 4, 2008, the night he called me to tell me the diagnosis. I was on my way out the door to see one of the presidential candidates rally in the city I lived in on that night before Super Tuesday.
But this post isn't to give the long and boring details about his progression through the Story of Stage Four Lung Cancer. It's a long story. This is my utterly anonymous opportunity to vent. I have no intentions of sharing what I write here with anyone I know. Rather, I'm hoping that someone might stumble across it and sympathize with an experience or two. I spent weeks googling online support groups for "adult children of parents with cancer," or "graduate students with terminal parents," or "dad has stage four lung cancer." I was shocked at how little there is on teh interwebs for floundering fools like myself.
Anyway. More about that long, long, long path in the days and weeks to come.
After vehement resistance, he finally capitulated back in July to the state-sponsored hospice program. I was out of the country at the time, and a little nervous at the prospect of strangers coming in to take his blood pressure and coddle him. But it's turned into a literal lifesaver. His primary nurse is a dear, kind, compassionate woman who respects his religious (non)beliefs, his alien eating habits, and his downright dickheaded attitude. (At times. Speaking of which, I highly recommend shitmydadsays for those of you with curmudgeonly, aging, sick parents who don't recognize their own [you name it: racism, assheadedness, douchebaggery etc.])
That's another thing about this blog being entirely anonymous. I don't have to censor what I say because I'm worried that (again, you name it: an aunt, my former nun boss, a super-Christian/easily offended friend, my dad) will read this.
The last two weeks have been really difficult. Two weekends ago we took a trip to the super-suburban Target down the block (oh BOY!), and he became so short of breath and had such a long, wheezing coughing fit that we turned around to bring him back home. But he's so damn stubborn that he's refused to let the doctor give him a handicapped parking sign, so we walked a good thirty spots up to the monstrous store in chilly [state] fall air. Of COURSE a 61-year old man with fourth-stage lung cancer in its 20th month is going to get short of breath. But this hit him hard, and fast. And he's only got one working lung now, so it's been remarkably debilitating.
Since then we've seen his primary hospice nurse two, even three times a week. She brought in a massive oxygen machine. My aunt - a helpful, yet meddlesome woman - came for a "brief visit" and brought 30 days of clothes. For four or five days she almost made herself actually useful, and then flipped when a sibling and I told her honestly that her high-energy, high-maintenance attitude was misplaced in this slow-moving, inevitable march toward The End of the Story and left the state that very day. The nurse told him about a... home? I don't exactly know what to call it. It's got a big, fat cross on the front and is called Our Lady of Peace and Eternal Schmaltzing or something of the sort. It's specifically for terminal cancer patients. And it's privately funded, and entirely free.
The hospice nurse called me today to tell me a bed opened up. If Dad wants it, we need to confirm that by tomorrow. And he can move in the day after.
The whole bus ride back from campus to my yuppie-ducky white-bred upper-middle-class suburb (with one whole bus route that runs during rush hours on weekdays!) I was on the phone. Cancelled some plans with friends, got advice from some experienced folks. When I got home, I told Dad about this offer. And suggested to him that we go visit the place first, before he made any decision.
Secretly - okay, not-so-secretly - I was (and am) hopeful that he will go for it. I'm 26. I live in a wretched suburb. I want to socialize and spend the night at the house of an attractive man who has made it clear that he's interested in me. I want to go to bars and get tipsy and stay on campus late and participate in extracurricular activities. And I love my dad and would do anything - repeat, ANYTHING for him. But he's woken me up the last three nights because...he was hungry. Or in pain. Or confused. And it absolutely breaks my heart, and I firmly realize we've reached and far surpassed the point at which "family member should not be a caretaker, because icky stuff needs to be done now, and kids changing parents' pants is a bit of a role reversal and doesn't jive with the notion of Death with Dignity."
I should mention: I live (mostly) alone with my dad. He and Mom are separated, and not on good terms. She lives on the other side of the country. My younger siblings live on campus, 17 miles away by highway. One likes to come in to help, but the help is very sporadic, usually taking place when said sibling's bipolar disorder works in our favor and she gets really, really proactive. Said sibling is hyper-proactive for a couple days then retires to the campus apartment, leaving me to do what I've been doing for the last year and a half: live with Dad and watch this slow, steady yet meandering path through the story whose ending we know.
At any rate, back to today. I suggested to Dad that we visit this home, just to check it out, so he could make an informed decision tomorrow. Dad's really, really confused these days. The hospice nurse said this could be due to one of three factors: 1) The painkillers he's taking could knock down a horse, and he's just a 5'2" man with 100 lbs on a really, really good day. They might be scrambling his brains a little. 2) Prolonged hypoxia as a result of, you know, tumors in his lungs will deprive a brain of oxygen and make a person rather loopy. And 3) cancer spreads. This kind of cancer most often spreads to the bones and...brain.
This loopiness was hardest to deal with today. I mean it when I say today was the hardest day yet. I asked him four, five, six, seven times if he wanted to go visit this home. He finally sat up - with help - and told us he'd go. "I know what's up. I know how this goes. If this is the way it's going down, so be it."
It hit me: he thought I was placating him so I could dump him off at this home like adult children stereotypically dump their doddering parents. My heart broke a little.
Then the doorbell rang. It was a repairman to fix a nozzle on his oxygen machine. But to dad, it was the nursing home with a van to take him away.
On the car ride to visit the home, my sister drove. I cried quietly in the backseat.
The night didn't end there, but my energy ends now. I feel my hairs going gray - I swear I do. I'd kill to make a friend in my situation - a twenty-something, a graduate student, an adult child living alone with a terminal parent, stuck in the suburbs, trying to maintain a social and romantic life while living 10 miles from the nearest metropolitan area with a terminal parent who needs constant intermittent care.
To be continued.
Then I realize that I had that exact thought that last Saturday night, and the Friday night before it. And about three times in September.
Not to say that each of those statements isn't true. I'm certain that tonight WAS more difficult than last Saturday night, and Saturday was definitely more difficult than Friday. As this thing progresses, it gets harder and harder to deal with.
I'm starting this blog as my father enters the last stages of his final stage of lung cancer. Ten points if you can name this song and artist without googling it: Every new beginning comes from some other beginning's end. Or, as my dad likes to say, He who is not busy being born is busy dying.
He said that to me the night of February 4, 2008, the night he called me to tell me the diagnosis. I was on my way out the door to see one of the presidential candidates rally in the city I lived in on that night before Super Tuesday.
But this post isn't to give the long and boring details about his progression through the Story of Stage Four Lung Cancer. It's a long story. This is my utterly anonymous opportunity to vent. I have no intentions of sharing what I write here with anyone I know. Rather, I'm hoping that someone might stumble across it and sympathize with an experience or two. I spent weeks googling online support groups for "adult children of parents with cancer," or "graduate students with terminal parents," or "dad has stage four lung cancer." I was shocked at how little there is on teh interwebs for floundering fools like myself.
Anyway. More about that long, long, long path in the days and weeks to come.
After vehement resistance, he finally capitulated back in July to the state-sponsored hospice program. I was out of the country at the time, and a little nervous at the prospect of strangers coming in to take his blood pressure and coddle him. But it's turned into a literal lifesaver. His primary nurse is a dear, kind, compassionate woman who respects his religious (non)beliefs, his alien eating habits, and his downright dickheaded attitude. (At times. Speaking of which, I highly recommend shitmydadsays for those of you with curmudgeonly, aging, sick parents who don't recognize their own [you name it: racism, assheadedness, douchebaggery etc.])
That's another thing about this blog being entirely anonymous. I don't have to censor what I say because I'm worried that (again, you name it: an aunt, my former nun boss, a super-Christian/easily offended friend, my dad) will read this.
The last two weeks have been really difficult. Two weekends ago we took a trip to the super-suburban Target down the block (oh BOY!), and he became so short of breath and had such a long, wheezing coughing fit that we turned around to bring him back home. But he's so damn stubborn that he's refused to let the doctor give him a handicapped parking sign, so we walked a good thirty spots up to the monstrous store in chilly [state] fall air. Of COURSE a 61-year old man with fourth-stage lung cancer in its 20th month is going to get short of breath. But this hit him hard, and fast. And he's only got one working lung now, so it's been remarkably debilitating.
Since then we've seen his primary hospice nurse two, even three times a week. She brought in a massive oxygen machine. My aunt - a helpful, yet meddlesome woman - came for a "brief visit" and brought 30 days of clothes. For four or five days she almost made herself actually useful, and then flipped when a sibling and I told her honestly that her high-energy, high-maintenance attitude was misplaced in this slow-moving, inevitable march toward The End of the Story and left the state that very day. The nurse told him about a... home? I don't exactly know what to call it. It's got a big, fat cross on the front and is called Our Lady of Peace and Eternal Schmaltzing or something of the sort. It's specifically for terminal cancer patients. And it's privately funded, and entirely free.
The hospice nurse called me today to tell me a bed opened up. If Dad wants it, we need to confirm that by tomorrow. And he can move in the day after.
The whole bus ride back from campus to my yuppie-ducky white-bred upper-middle-class suburb (with one whole bus route that runs during rush hours on weekdays!) I was on the phone. Cancelled some plans with friends, got advice from some experienced folks. When I got home, I told Dad about this offer. And suggested to him that we go visit the place first, before he made any decision.
Secretly - okay, not-so-secretly - I was (and am) hopeful that he will go for it. I'm 26. I live in a wretched suburb. I want to socialize and spend the night at the house of an attractive man who has made it clear that he's interested in me. I want to go to bars and get tipsy and stay on campus late and participate in extracurricular activities. And I love my dad and would do anything - repeat, ANYTHING for him. But he's woken me up the last three nights because...he was hungry. Or in pain. Or confused. And it absolutely breaks my heart, and I firmly realize we've reached and far surpassed the point at which "family member should not be a caretaker, because icky stuff needs to be done now, and kids changing parents' pants is a bit of a role reversal and doesn't jive with the notion of Death with Dignity."
I should mention: I live (mostly) alone with my dad. He and Mom are separated, and not on good terms. She lives on the other side of the country. My younger siblings live on campus, 17 miles away by highway. One likes to come in to help, but the help is very sporadic, usually taking place when said sibling's bipolar disorder works in our favor and she gets really, really proactive. Said sibling is hyper-proactive for a couple days then retires to the campus apartment, leaving me to do what I've been doing for the last year and a half: live with Dad and watch this slow, steady yet meandering path through the story whose ending we know.
At any rate, back to today. I suggested to Dad that we visit this home, just to check it out, so he could make an informed decision tomorrow. Dad's really, really confused these days. The hospice nurse said this could be due to one of three factors: 1) The painkillers he's taking could knock down a horse, and he's just a 5'2" man with 100 lbs on a really, really good day. They might be scrambling his brains a little. 2) Prolonged hypoxia as a result of, you know, tumors in his lungs will deprive a brain of oxygen and make a person rather loopy. And 3) cancer spreads. This kind of cancer most often spreads to the bones and...brain.
This loopiness was hardest to deal with today. I mean it when I say today was the hardest day yet. I asked him four, five, six, seven times if he wanted to go visit this home. He finally sat up - with help - and told us he'd go. "I know what's up. I know how this goes. If this is the way it's going down, so be it."
It hit me: he thought I was placating him so I could dump him off at this home like adult children stereotypically dump their doddering parents. My heart broke a little.
Then the doorbell rang. It was a repairman to fix a nozzle on his oxygen machine. But to dad, it was the nursing home with a van to take him away.
On the car ride to visit the home, my sister drove. I cried quietly in the backseat.
The night didn't end there, but my energy ends now. I feel my hairs going gray - I swear I do. I'd kill to make a friend in my situation - a twenty-something, a graduate student, an adult child living alone with a terminal parent, stuck in the suburbs, trying to maintain a social and romantic life while living 10 miles from the nearest metropolitan area with a terminal parent who needs constant intermittent care.
To be continued.
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