Tuesday, January 29, 2013
Every set of drinking buddies always drank worse than the last set. I kept trading down. The worse my drinking got, I had to find folks that drank more than I did. Then when I surpassed them, the search was on again. The second to last set of drinking buddies was a couple in their forties. It was his second marriage, to which he brought his teenager son along.
The son was quiet. A bit too quiet. His father and step-mother were regular drunks, whose level of drunkenness I had been aspiring to. One Sunday morning we went and cleaned up the V.F.W. We vacuumed. And we drank everything they had.
Some weekend shortly after that, one of our regular bartenders made the mistake of telling me that the step-mother was beating on her step-son. Maybe it wasn't really a mistake to tell me, I don't know. I used that as an excuse to go barhopping and get drunker than Hel. Five hours later, I had passed out in the backroom of another bar someplace else.
I got home, got hungover, got cleaned up enough to go to work the following Monday. The son continued to get beat upon. Drinking at my two drinking buddies was ineffective. The correct action would have been to get some help for the teenager son. But I didn't do that. Drinking at my two drinking buddies was Epic FAIL.
sapphoq on life
Sunday, January 20, 2013
Dad has had a "good" [for him] week and a half or so. A couple of days ago, he swung back into mixing things up and insisting that the things he has mixed up are accurate.
Dad: I'm going to cancel the television [he means cable] because it was seventy five dollars and I can't afford that.
sapphoq: That is your cell phone that costs seventy five dollars, Dad. Your cable television costs less than five dollars a month.
Dad: No, it was seventy five dollars the television. The phone company is collecting money for the television company too.
sapphoq: The phone company is separate from the television company. The phone is seventy five dollars. The television is less than five dollars.
Dad: Yes I know that. The phone company collects its own money. The cable company charges for the television.
sapphoq: That's right.
Dad: The phone company also is collecting money for the television. It is seventy five dollars for the television. I can't afford that. I'll only get three channels up here. So I will have to hang out more in the living room downstairs to watch the other channels. And I have to get a job. I'm doing better now.
sapphoq refrains from banging her head into the wall.
Then there was the conversation with a relative over his cell phone. Dad was explaining that he was having difficulty working the cell phone now. Only, he kept calling it a "computer" because of his aphasia. Dad has been declining mentally and physically. Any remnants of skills that he had a couple of years ago with the computer are gone now. He is having difficulty with finding the contact list on the cell phone. Housemate and I are not financially affluent and would have difficulty buying Dad a simple black and white e-reader, never mind a computer of any sort.
Relative: Oh, you got your dad a computer.
sapphoq: No, Dad is referring to his cell phone as a computer.
Relative: Oh. I thought maybe you got him a computer.
My relatives can afford to be in denial over my dad's failing brain. For his safety, I cannot be. Some days, I feel the burden of that knowledge like a weight on my chest.
Today there was quite a bit of talk about "Obama is really wrecking the country," repeated several times at random. [The news was talking about the Inauguration ]. And some chatter about the "new company" [he thinks his assisted living home has been sold-- it hasn't] "is fixing things up and painting. They painted the kitchen the other day. The staff is screaming about it." [This is a ploy to get out of the assisted living home and into an apartment, a job, a car...]. "We'll have to see how it goes, Dad," I said.
Something came on the news about airplanes.
sapphoq: Dad, do you remember when you took me up in that little airplane in Hiserville?
Dad: Yes I do. We had to wait a long time at the airport that day.
sapphoq: I don't remember the wait. I do remember getting into the plane, the take off, and flying over the countryside. I remember looking out of the window and everything was getting smaller.
Dad: I wanted you to see what it was like to be flying.
sapphoq: That was so cool!
Dad: I didn't know that you liked it. You said very little that day.
[I didn't talk much as a kid. I was unusually quiet].
sapphoq: I really liked it!
As difficult as it is for me at times to bear witness to what is happening to my dad because of the dementia, my dad is the one who has the dementia. He has lost so much because of it.
As difficult as it is for me at times to acknowledge my dad's impending death [whenever that does occur], I am losing one person. My dad is losing everyone.
sapphoq on life
Friday, January 18, 2013
Beauty arises from complexity and random chaos. That which we fear is inherent in our own strangeness. The patterns that we imagine to be dangerous are the golden threads that hold us together. The truth and the lie are burdens that are equally hard to bear.
The patterns in my own life whirl around me in a blur. They are muted and bright at once in the same breath. I touch the pain that ripples underneath the surface. I have loved those that were undeserving of my love. I was loyal far beyond the point where reason was screaming, "Get out!" Janus caught me repeatedly in her lair until I learned the stark difference between mutual aid and altruism. I sought healing in the spaces that fill me with passion. For Emo cannot exist in nature or in numbers.
There is a mundane sacredness that envelopes me. I touch Fibonacci in action. Mystical imagination is detrimental to the experience of savage wonder. No gods or holy edifices are capable of teaching me anything better or wiser.
sapphoq on life
Sunday, January 13, 2013
When Dad was in the service, he traveled throughout the South-- sometimes on a train, sometimes on a motorcycle alongside his youngest brother. He used to talk about the tent revivals that he saw in abundance. He and his brother used to stop at them. Dad studied the preachers and their methods. He liked to pay attention to people, what they were doing, what was effective in their sales pitches [even if what they were "selling" was salvation]. Dad used to talk about the emotional hook of the music, folks falling down slain by the holy ghost, people shouting amen. Those tent revivals were a grand ol' time for two young men looking for a bit of entertainment to break up the monotonous road stripes and signs.
Dad had a girl who was rather religious. Perhaps even a Baptist or a Jehovah's Witness but I don't properly remember now. She was straight-laced, too proper for Dad's taste, and so when it became apparent that Dad was not going to convert, she left him to seek her fortune elsewhere. The whole thing lasted less than two months.
I had an aunt. She had multiple sclerosis. There were many things remarkable about her. She had the use of three fingers and was typing a fictionalized account of her life when she died. She took college courses via a special television hook-up long before those things were commonplace. She could talk with the class from her living room and they could talk with her as well. She was working towards a counseling degree. She wanted to conduct groups for teens from her home. Had the m.s. been more co-operative, she would have done it too I bet. [She died].
My aunt was always watching some televangelist on her teevee. His name was Morris Cerullo. His punchline I remember well, it was, "Expect a Miracle-- Today !" He also delivered an appeal for some of the earthly finances of his congregation. My aunt responded to his heartfelt beggary with regularity. The truth of the matter was that he was living in a veritable mansion, being supported in a style that I can hardly imagine by the offerings of television audience. My aunt never did get her miracle. She should have. She was a sincere believer. But like Charlie Brown-- How can we lose when we are so sincere? left standing out alone in the field-- she died from the multiple sclerosis before Morris Cerullo and his gawd could free her from her disease process.
sapphoq on life
Wednesday, January 09, 2013
We are somewhere near the West End. We are nowhere. We are traveling towards something undefined. We are running away from all we have ever known. We had watched the crashing planes, the buildings blow. We shiver. Is that what brought us to this twisted place?
It had started. Twelve years ago, I think. More than ten and less than fifteen. I've been told more than once that I have no sense of time or distance. I know that isn't so. When I am away from clocks I can guess the time to within ten minutes of your watch. Especially if we are in the woods. I don't know if I always could do that. But I can do that now. Now is the arbitrary division between "before my m.v.a./brain damage/t.b.i." and after. Distance is something I can feel. It is not my blindness if my mate is puffing after only three-quarters of a mile.
Face-blind. I am face-blind. I roll those words around on my tongue feeling their textures like pockmarks or a scar. I tell people I am face-blind so they do not startle when I don't recognize them in the supermarket or the restaurant or if they get a new hat. They startle anyway. Silly people. A few people don't know what those two words mean-- face-blind-- and a few who do know have reacted with something akin to surprise. You? Yes. Like everything else, I hide it too well. Passing is in my bones. And it ought not to be. Society is not compassionate to those it judges as "Other." We all wear masks. I wear mine with pride.
But this is not about me. This is about you. Us. Another trip to the neurology clinic. You are abnormally quiet in the car, breaking the silence to point out the clean snow along the side of the road. I point out the frost choking the trees. The ducks in the river are a blur to you. You miss the red-tail hawk completely. But I see him. And also the blackbirds fanning in a mating dance over there in the swamp which tells me spring is coming early this year.
The hospital rises above mid-town, a mute testament to those who have served our country and to those who continue to be slaughtered in the name of an unforgiveable peace. I let you off in the front. You are having difficulty extracting yourself from the cloth seat and rotting floorboards. You push. You get your hips centered over your feet. You stagger to the entrance.
I drive to the parking lot. It is more crowded than I've ever seen it. I am very tired. I circle the lot three, four times. The singular parking space is a leftover, violated from all sides by large shiny cars. No room for the rust-bucket. The mechanic told me last week that the car will get me through the winter-- maybe-- but it will be completely rusted from the bottom by spring. I wanted to ask him if he could just weld another car's bottom onto my car's mid-section. I don't ask. I am back in the parking lot and I want to cry. It is too early for tears.
Back to the front of the hospital, I spot a boy. Boy because the fuzz under his mouth is barely hair. Boy because I've gotten older. "Hey, come here!" I yell. He does. "My dad is in there alone and he has dementia. Take the car." He asks if I will be back soon. "Sorry, I can't. He has appointments." The boy uses a cheap blue ball-point pen to scribble something onto the ivory ticket stub with the red numbers. Deftly, he separates it into two portions-- no, three-- places one under my windshield wiper, and gives one to me. Later I will find the third wrapped around my keyring.
I go inside to find my dad standing under a heater with another vet. Dad is talking in spite of his headache. The vet is listening. Dad is like that. He always has been. Making connections with random strangers is easy for him, even in the midst of his brain failure. Dad says goodbye to his new companion and we stagger to the elevators. Someone else holds one for us and safely installed in a sea of faces smiling through pain, we go up.
After checking in, we wait an hour in the waiting room. A smiling woman collects my dad to take his vitals [They are excellent, she says to me in triumph] and then we wait a bit more. The couple next to us demonstrates their restlessness by striding up and down the hallway every ten minutes or so. Dad admits to his. I don't. I am concentrating on not gagging because someone left the woman's room door open. Noxious, hideously pink fumes escape from it. I give up. I go in to wash my hands and then carefully adjust the door so it is open at a fifteen degree angle and not forty five. It makes a difference to me. I am no longer fighting waves of vomitus from the stink.
The doctor comes. We follow her down a very very very long hall. Dad, who also used to be able to walk as far as I can, struggles with the distance. He lifts his shoes up carefully so he doesn't trip on the linoleum floor which is built up with dull old wax. We are installed in a little white room, just like all of the other little white rooms here. Let the interrogation begin.
Dad declares that he fell out of bed a few days ago. I haven't heard this story before. Now his headache is along the top of his head. A few minutes later it is the left side. I suspect this traveling headache to be an ataque de nerviosas but the neurodoc doesn't. She orders one or two bedrails, some ointment, and a head scan. Today for the head scan. "We must rule out internal bleeding," she explains. I know that. Around eight years ago, I also was sent for a head scan 'today' in order to rule out the same thing. "After lunch," I say. She quietly writes the order to double his dementia medicine. His short-term memory loss is really starting to show. Dad is with it today. "Yes," he tells her, "I do repeat myself sometimes." "No," he clarifies, "it is not the colors of the rugs that give me trouble. It's the textures. Sometimes they trip me up." Scratch Alzheimer's off the list again. I breathe in quiet relief. I hadn't realized that I was holding my breath.
We have lunch in the bowels of the hospital. Dad used to enjoy their hotdogs, rice and beans, or a hamburger. Now he only wants a biscuit and some rootbeer. This is the second time we've had lunch here that he says he isn't hungry. Is that he is worried about spending [my] money? Or ashamed of the deterioration of his fine motor skills? My dad who taught me how to eat in a restaurant! Or is it the mysterious headache and bumps which shift here and there, left to right, up and down? Next time I will take him to the diner down the road. The diner at least has a selection of pastries. If nothing else, dad will enjoy those.
After lunch, we dutifully report to the radiology department. I tell Dad several times where we are. Ra-di-ol-o-gy, he repeats himself. He remembers the receptionist. I don't. I've never seen her before in my life. This is the world of the face-blind. I don't mind. I've learned how to pass. Dad goes off willingly with the radiologist, one whose face he also remembers. I sit and pass the time in the waiting room.
Dad comes back and reaches for his coat. "One more stop," I tell him. I hate having to do this because I know he still has his headache plus he is now tired from roaming the halls of the V.A. We go up another floor and the signs point us in the direction of prostetics. Bed rails are in prostetics, we had been informed by both the neurodoc and the receptionist there. Actually, they aren't. The prostetics lady carefully explains to me that neurology will send down a consult. And then the bedrails will be delivered by someone who will set them up. "So one day someone and the bedrails will show up?" I ask. "Yes." Times like these, I wish my disability was visible. But it is not.
I cart Dad off to the elevators one last time. He has a mystery appointment. Someone called the assisted living home the other day and insisted that Dad also has to go to ___________ . The only thing I have is the room number. It turns out to be a study. Dad had signed up for the study eighteen months ago and then steadfastly refused to do anything else about it. But the lady behind the desk was very warm and friendly. Dad understood her explanations and signed willingly. He went off into the next room with her to have a blood sample drawn-- protected by H.I.P.P.A. and all the other bastardized initials courtesy of our lovely, cough, politicians-- and came out smiling but unsteady on his feet. I jawed random things about dementia at her officemate who was quite willing to listen while waiting for Dad and his newest companion. My own brain damage [it is a traumatic brain injury but I've recently taken to calling it "brain damage" because I am tired of living a sanitized life] is threatening a typhoon of fatigue but I stand my ground. A couple more hours and I will be home. Then I can give in. But now, I must be here. Totally and completely.
The study lady is sunny and warm. She tells Dad about her own kids and her dog. She does not talk about a husband. Neither one of us asks. We both know about divorces and affairs and beatings hidden by whitewashed walls. The socialization is good for dementia. I remember several docs saying that. So I let Dad socialize and I socialize too. I don't have dementia as far as I know at the moment. I don't really understand idle talk. But here we are not chattering into the wind. We are making fragile memories. The docs will say we are strengthening bonds or stimulating our brains or whatever. I am by nature a hermit preferring my own company and the occasional company of other hermits. But I put up with the vast influxes of people on clinic days because I have to. And becuase it is good for Dad. Dad allows the study lady to help him with his coat. She hugs him and she hugs me and she makes sure we get on the elevator. It is a bank of elevators behind the usual set. But I am able to follow the arrows to the lobby once we get off. Face-blind yes, but good with distance and direction and time-sensing.
A different boy, a man really, pulls out number sixty-four off the hooks and strives off to retrieve the rust bucket. He leaves it in the middle of the circle, engine running and both doors open. But even here in mid-town there is no danger of any thief being desperate enough to steal my dying car. Dad folds himself in. I climb in and gulp down some diet soda. "You want some?" I ask. He doesn't. Rarely does anyone say yes to soda left in my car. I don't know why.
Dad does not want to go to any stores or have coffee on the way home. He does not mention wanting to stop at a car place for a job application. [I am relieved. Just the other day he was insisting upon doing this]. He does not want me to get him something for his headache. [He has refused my offer of this all day. I will learn to carry some with me along with the ever-present box of tissues for his phlegm and runny nose]. I see another red-tail hawk on the way back, some Canada geese sprinting up from the river, more blackbirds dancing. I don't know what Dad sees. He admits to being tired but then says, "I didn't want to go today but I am glad now that we went." I understand. At the house, his home that he shares with other old folks and some dedicated staffers, he heaves himself out of the car and waits for my hug. "I love you, Dad," I say and I give him the neurology clinic papers. He sets off for the stairs and the front porch. He opens one door, staggers into the vestibule, closes the door. I set off for home then and the tears finally come in the silence.
sapphoq on life
Wednesday, January 02, 2013
Appointment is at 1:15.
I arrive at 12:35. The office is 20 minutes away.
Dad: (coming out of dining room): I have to wash my hands.
Me: Okay, Dad. I'll wait down here for you.
Dementia has its' own timetable. Dad no longer understands why he should have to show up anywhere at any given time. Fortunately, the doctor and the doctor's office help all understand this. Various housemates of Dad float by and we greet each other.
Dad: (at 12:58). I'm ready. You go out first and start the car. (translation: I don't need your help walking down the stairs today).
I start the car. I watch Dad walk down the stairs. I help Dad into the car, straighten out the seatbelt. Dad has one brown glove and one black glove with him.
Dad: (at 1:05) Why are we going to the doctor? Which one?
Me: You were complaining about shooting pains in your leg near your scab. And burning.
Dad: Okay. (looks around vaguely).
(translation: I have no idea what you just said but I'll ride along and see where we end up).
In doctor's office at 1:25. The staff see him arrive and check him in as I am parking the car.
Doc: Your scab is healing. Everything is okay. The cellulitis did not come back.
Dad: Doc, is my leg going to fall off ?
Doc: Your leg is firmly attached. You are going to be alright.
Dad: But my ankles are different colors, see?
Doc: (inspects ankles, straightens out one of Dad's socks for him) Your ankles are that way because of your age.
Me: (out in the hallway with the doctor) Sorry Doc. He said he was having shooting pains and burning.
Doc: I'd rather have you bring him in and it be nothing than you miss something that he does need medical attention for.
Dad and I go out for coffee at the favorite local diner. This is something that we enjoy doing together. Dad orders coffee. I order hot chocolate. We split an English muffin. Dad comes back from the mens' room and is able to tell the manager that the sink water in there was too hot.
We start the drive back to Dad's home.
Dad: My leg didn't hurt in the doctor's office. Now it is burning and has shooting pains.
sapphoq on life: And I even had a question about which side of the family donated a genetic propensity toward anxiety to me???
Dementia is hell. Dementia is painful. Dementia tears families apart. Dementia has torn our family apart. I am losing one person. Dad is losing everyone. Dad was always there for me and now it is my turn to be there for him. I feel very fortunate and honored that I can be a comfort to Dad in the evening of his life.