Friday, May 13, 2011

almost a year later

At this time last year, I was going to Cannes, and my dad was still big and strong and looked young and lively. This photo is from the summer before last when my parents celebrated their 40th wedding anniversary.

I was watching him a couple days ago because my mom was on a business trip. Anybody who meets my dad now sees and old man in a wheelchair and sweatpants I think. His teeth have gotten bad. It's hard for him to brush or for us to brush I think. I think a tooth got chipped when he had a seizure. He seems to have aged more in his face. Since he can't walk anymore his body has lost muscle in a lot of places. Sometimes he acts a bit infantile and complains or makes noises in inappropriate situations. He doesn't have defined motor skills. He can't speak but he can make noises. But he smiles and gestures and communicates with people.

When people meet him they must think he is cute, feeble, old, kinda weird. Probably weird. They are nice, understanding. They know that something is wrong. But do they know that just last year he was so big and strong and active and healthy, that when he helped me move out of my apartment, he carried this big cabinet all by himself? I came after him saying "hey don't you need help with that?" and he was like "no I'm fine"

This isn't really my dad. This isn't how he is or who he wanted to be at this age, of course. He was a health nut, and he would always say he was going to live till he was 100. He liked to play tennis, and had a huge cabinet full of vitamins and supplements. If people think you get used to things being the way they are, I haven't yet. I think we all accept it, but I never like it. It seems obvious, but I think people forget that. I don't like it. I do want to take him around to do interesting things and go places together. I want to give my mom and my sister a break by watching him when I can.

Sometimes it's like grandma. Grandma was paranoid schizophrenic and so it was like she was a shell of a person. Only once in a while did she ever talk to you as herself. Maybe a handful of times in my whole life did she ever seem to be with it. Maybe only this one time that I really remember, when she said "I don't know why I say all these things, it must have been when they brainwashed me." She seemed really coherent in that moment. But then again, maybe her personality was always there. The way her sisters described her when she was young and sane was as a funny free spirited girl. She always kind of acted like that.

And sometimes I wonder when my dad is really being himself. He is still funny, and he still doesn't trust the government or doctors and that's always how he was.

I wonder about the day before his stroke when he picked me up from the airport, and I wanted to make this special Oxtail soup because I found the mix for it in Switzerland, and it's discontinued in the united states. You have to add ingredients for it, and I wanted to grab them all at shoprite on the way home, but my dad insisted on going to different places to get all the ingredients and it drove me mad. I was so angry at him. I was tired from the plane and I didn't want to go to different stores for each ingredient - but he thought certain stores were better for certain things. I was so angry and yelling at him to just take me to one damn store and then we go home because I was cranky and tired. I was really mad and annoyed at him. He did things like that sometimes. He was probably being more annoying and hyper than normal because his blood pressure must have been so high that day.

The next day when he had his stroke his blood pressure was in the 300s - healthy blood pressure is between 100-160 or so depending on the person. They say he was a ticking time bomb. I felt like maybe I got his blood pressure up by fighting with him. My mom felt like maybe it was the stresses of her seemingly evil job that drove his blood pressure up. We have to remind ourselves that he was a ticking timebomb. The day of his stroke my dad was singlehandedly trying to renovate the house. He was lifting large furniture from downstairs to upstairs. Just sort of going for it without asking for help. My parents were going to try to transform the lower level to an apartment to make extra income since my mom's work was messing with her they way they do that makes people miserable in their life and jobs. My mom and dad watched a movie on the couch that night. I went into the city to celebrate my classmate's birthday at her upper west side apartment.

We were sipping on sparkly wine and eating brie cheese and catching up with friends. I got a phone call from my sister. Dad's having a heart attack or something, mom doesn't know.

Dad was sitting on the couch and suddenly looked off into space and became unresponsive. My mom was shouting and thought he was having a heart attack, tried to give him aspirin but he couldn't move. She called my sister to call 911 while she tried to help him. I wonder why she couldn't call them herself, and I think she feels bad about that, but I understand it's hard to call 911 while something is happening. I called 911 when my dad had a seizure and I was screaming and crying and just wanted them to be there without having to answer questions. I called 911 when grandma attempted suicide by swallowing aspirin to 'get rid of the black things'. I called 911 when someone broke into the basement level of my apartment building in Hoboken. I called 911 in Washington DC when a crazy drunk man jumped on the back of my car while I was driving slowly down city streets. Have you ever had to call 911?

When I got the phone call - I cried but it wasn't like I've ever cried before. My friends looked at me like "is something wrong"? Something was wrong. Yes. It was like I could barely say, my eyes were wide and I exhaled big and was shocked and they told me to sit down and gave me water. The cry wasn't exactly loud crying sound, it was more like shocked intense breathing. What do I do? What's happening? Do I go to the hospital? My friends talked me through it. Take a cab to your car which is parked in Williamsburg. Adam will drive you. I remember the taxi driver was being a dick about something. Miller says in On Suffering that pain is a thorn in our sides that sticks with us, and happiness leaves us more quickly.

We got to the ER, and mom and sister were in the hallway, my dad was just being pulled out of a surgery on a hospital stretcher. He came out of the room and looked up at us completely out of it. I just remember seeing him at the end of the hallway, sitting up, looking at us like 'what the hell is going on?'

It was a stroke and the doctor did something to break up the blood clot in his brain. We stayed with him until late and my mom spent the first night overnight in the room with him. It was my birthday and I was born in that hospital.

In the early morning my sister or I came. We would go in shifts. He was in the ICU the first 3 days, and then in another part of the hospital for about 7 more days. When he was in the ICU he was really out of it. Couldn't make a sound, couldn't move the right side of his face at all. Couldn't eat, things would fall out of his mouth. We always wanted someone to be there at night. He would wake up at different intervals and look around, afraid. We didn't like the idea of him looking around with nobody there to comfort him. The first few days we would, or at least I would just tell him that he had a stroke and that I was there for him.

Then when he was in the other part of the hospital, I'd sleep on the couches in the family room instead of being in the room. I'd take the night shift because I wanted my mom to sleep, and my sister has kids. I remember the helicopters that would come in to the hospital every night. He would tell us to go home, but we all felt like he needed us and we didn't want him to be lonely or sad or scared in the hospital, and I think we were all afraid of something happening like another stroke or something. Every day different people made their rounds. In the first week we discovered that he could swallow, which people sometimes loose if those muscles are paralyzed. And he was able to move his leg a bit.

After 9 days, they transferred him to Kessler Rehab center, where he would be for the next 3 months. He would get physical, speech, and occupational therapy. They told us he could get everything back. He has gotten some things back, not everything. A couple weeks in he made a sound with his voice for the first time. That was exciting. I believed that dad would be walking with a cane by Christmas time. I wasn't sure if we should really build all kinds of handicapped things at the house because I thought we didn't really know if he would have to have a wheelchair forever. I guess I was wrong about that.

When we brought dad home in August, it was one of the hardest, most labor intensive weeks. The house wasn't designed for a wheelchair, and we were new at doing everything in a different way, and dad was hyperemotional for a while, which is a side effect of a stroke. He'd get really sad and cry so easily. The next few months where we adjusted to things were pretty much terrible. To come home with this. To see what was going to be permanently lost, instead of people keeping on telling you that things are coming back, there comes a point where you want to deal with what's gone.

I spent every day that summer helping him in the hospital, helping mom at home, then helping at home the last few weeks when he was there. You may wonder what I needed to do, and it felt endless. He needed help shaving, brushing his teeth, he needed company even when he was at Kessler, he needed to see us every day. He really did need extra help doing things. At home, mom needed help doing all the things dad used to do, figuring out bills, fixing things, doing the dishes, taking out the trash. There's nobody else to help her with that anymore. I put in my time at home, and then I left it all to continue graduate school, something that requires all of your time if you do it right.

Around September and October, dad became angry and irrational and his blood pressure was going crazy. He was refusing medicine, and getting angry, throwing things. He'd push himself in his wheelchair out into the street. I'd have to get on the phone with him to try and talk him into going inside. I'd step out of classes and get on the phone with mom and dad and talk my dad into wheeling himself into the house from the street. He can't really wheel himself properly since his one arm and hand are paralyzed, but he pushes with his feet. We'd like to get him an electric wheelchair he can operate with one hand.

This time nothing I could say worked. Usually he'd listen to me, but he just wanted to throw the phone away. I think sometimes he actually did throw the phone.

He became so irrational and impossible, and refused to take his medicine, he'd get prostate infections because of this too, and so he even had a prostate cancer scare. When he started refusing his therapy In October, I went home from school, and checked my dad into the psychiatric hospital. He spent the next few weeks in the psychiatric hospital, among mostly drug addicts and suicidal young people. But he made friends. And he was the only person in his group sessions who couldn't speak. They'd never had anyone like my dad there before. But at least they made him take his medicine.

He went to the hospital at least one more time after that for abnormally high blood pressure. I remember visiting him in the hospital then, trying to find him among all the rooms and beds, seeing his face, recognizing him, so much life in that face that I know, that's my dad.

Finally he came home. He started taking certain medicines and going to therapy, but he refused some of them. For a couple of weeks he started acting normal. I came home for thanksgiving during my school's filming production period. We film continuously for 3 months straight. I loved the hard work and making those movies. Some people complained about the hard work, but I don't know if they forgot for a minute how cool it is to make movies. Well, sometimes when you've got a difficult director it can be hell, but overall, it's much better than being in an office, or being in the hospital. Thanksgiving day was at my sister's house, and the day after, we decided to make our own thanksgiving dinner because my dad likes cooking. Mom went out to the store to buy some ingredients while dad and I were cooking at the stove. It was a really nice morning. My dad looked at me like something was wrong and wanted water, and wanted me to check his blood pressure. And then his face went blank, and I knew right away something was wrong and I called 911. He was having a seizure.

His face was changing colors, he was shaking, he was huffing and puffing and foaming at the mouth and making noises and sweating. It went on for about 2 whole minutes and seemed like forever. It seemed like he was dying. It seemed like he was going to shake and explode and I wondered if I was watching my dad die right in front of me. The ambulance came and gave him oxygen and we went to the ER. Dad was in the hospital again for another week. He was just starting to get some movement in his hand. After being in the hospital for a week with no therapy, and maybe also because of the impact of the seizure, he went backwards physically, and lost a lot of his leg and arm movement. We are still working on that.

After this, he became very afraid about not taking his medicine, and he has since taken all of his medicines, and is now mostly calm, warm, friendly, loving, and rational. He can be unreasonable and demanding sometimes, some of it's probably from his loss of control, and he wants to exert himself however he can. And this is how it has been since December. He had one more seizure in April, which scared us all so much to happen again, but this time it was fairly minor, it doesn't seem like he lost much from it.

And so this is how life is. He can transfer himself in and out of his wheelchair pretty well if he's not too tired. He needs help getting in and out of cars, on and off the toilet. If you watch him, he needs a lot, so it's a lot of work. If you just think about the fact that he can't wipe himself after going to the bathroom, and you have to do that for him - it's something that you wish you could take for granted, but it's pretty big to lose. I'm sure he never wanted his daughters to have to do that. That's something people might not get. This person in a wheelchair isn't just week or feeble. Someone who needs a caretaker needs someone to assist them in all the little details of life and movement. It's not something you think about if you don't have to.

I have so much work to do. So so much, I'm drowning in it. And yet I have my own space and I can get away. When I'm not at home, looking my dad in the face, my mom, my sister. I'd like to just go and do things that are all about me. I am surrounded by people with problems like with their iphones or dating, or getting drunk, or stressing over where to have dinner, or not liking their completely not that bad job. A whole wonderful assortment of privileged people problems.

I have to write a feature this summer, I'm not getting any younger. It would be great if this would go away and I could just think about myself, and sometimes I wish it would go away and not be true. I want my dad to come over and drive himself to see me. I want my mom and dad to take a break and relax. Every time I call home, my dad's voice is on the answering machine. All he says is the phone number "9-7-3 ...." and then it beeps.

1 comment:

Ron Purtee said...

I know what you are going through. After my mother was hit by a car I became her full time care taker. I know we don't know each other but if you ever want to talk to someone who understands what you are going through, feel free to contact me! :)