Doctor Grandma

Tuesday 4-21
Today was my “day off”. I had the most festive First Day of Ridvan that I’ve ever had. All day long party and Persian food. First, Farah served us Persian food for lunch. Then we went to the Baha’I Center, where half if not MOST of the program was in Farsi. Then more Persian food. Then, we went to the Persian party, where an individual family hosted a HUGE gathering for the Holy Day. It was AMAZING. So much fun. They chanted prayers, old women, little young children, and youth. They announced the coming of Baha’u’llah to the crowd. Then there was music, Persian drumming and singing, and of course, a HUGE cookout and Persian food dinner. Tables of fruit and cucumbers, strawberries, grapes, oranges. Kabob, rice piled high, salads, parsley and other greens, lemon-lime juice, hot tea. At times, a group would break into some Persian song and click their fingers, and clap, totally enjoying themselves. There were a few very older women with their heads covered in a scarf, but for the most part, Persian women are the most gorgeous women I’ve ever seen, and they all dress is colorful, gorgeous outfits, high heels and make up. There were a few Americans, and 2 elderly men, one who looked Hawaiian and one Chinese. After eating, some people started Persian dancing. It is all very fast, and easy to get into. There are no certain rules, you just move to the music. The women tend to stretch out their arms and wave their hands around in circles in an elegant-type of movement. They also sometimes shake their shoulders or move their hips (but not like in African-style dancing). The men move around also, sometimes jumping, turning around, or occasionally taking a scarf and moving it to the left and right, behind their necks, with arms outstretched. Farah and her friend were not dancing, though Jamal was itching to get into it, but suddenly, for the last couple dances, they all got up and pulled me with them. We all danced in the group for just a few minutes, then sat back down. It was great fun.

Wednesday 4-22
Today was so different from any others, since I have been here. It is nearly 9pm in San Diego, nearly midnight at home. This morning, we left Jamal and Farah’s and went straight to “Marilyn Cristian’s Independent Living” facility in National City, where Dan’s belongings had been left behind. Dan spent something like 3 months in this facility. It is actually in a house, in a neighborhood. It is a privately-run temporary living facility for indigent people. It was a lovely place, bright, lots of sunlight, clean, airy. There were 2 women there who were residents. I met Veronica, who talked about Dan and asked about his condition. She is actually Asian. (Sue had said she was very hard to understand and thought she was Hispanic.) Her accent is thick. Easier to understand her in person. The things that she told me about Dan’s stay there were that Dan could never follow the rules. She would tell him, “Your lunch is ready,” and he would reply that he didn’t want it. She said he would then sometimes sneak the lunch tray into his room and she would find it later. Dan could never go by a schedule his entire life, especially when someone else made the schedule and was telling him to follow it. She said he would sometimes say “Bullshit,” when she would tell him something. Dan walked out of this place a couple times, without permission and without warning. After Dan returned from one of these “outings,” he suddenly spit up blood all over his carpeted room, and that’s how he left there and ended up at the hospital. She once reported him to “missing persons”. She seemed like a very nice, caring person. I thanked her for her help for Dan while he was there. She asked how he was doing. I told her he was not expected to live long now. I told her alcohol destroys people’s brains, so they cannot think right. He had 2 bottles he had left inside the bag when he last returned there. She had dumped them down the drain after we told her to do that.

I had to sign and leave a note that I had picked up all of Dan’s belongings, including some government checks. We left there and I took all of Dan’s stuff to the Community Convalescent Center. On the way there, I had a long phone conversation with Susan, the social worker with Sharp hospice program, telling her about the govt. checks that were in Dan’s bag, told her of our fear that he might get his hands on any cash and call a taxi to leave the Center. I asked her if we could set up an account in Dan’s name, with these checks. She spent a long time telling me she didn’t think so. I also talked to her about getting my name, or all 3 of our names (me, Sue, Jim) on a list, rather than Sue being the sole contact person, because when I first called the Hospice program, they said they couldn’t tell me anything because my name was not on a list as a contact person. She said that had been a mistake, and I should be able to call since I was in town. I gave her Jim’s phone number.

When I got to Community, I asked to have a room where I could go thru Dan’s belongings before seeing him, because once I saw him, he would want it all. I wanted to check completely for his glasses, and just see what was in there. So this is a list of all of my brother’s possessions in this world, at the time of his passing:

• Social security and disability checks from the govt. totaling $1800.
• Some medicines in a bag which came from a La Mesa pharmacy. The medications he was taking were: Aldactone (25 mg), Spiranolactone (25 mg), Lasix and Furosemide. The rest were multi-vitamins and folic acid.
• One pair of light brown sz.10 shoes and one pair of sandals (I asked Dan later if they were his sandals, and he said, “Those are slippers.”
• One blue jacket marked “Jerry’s Rogue Jets, Gold Beach, Oregon”
• A cassette player with one tape in it which says Red Hot Chili Peppers, Ozzy Osbourne, & Tommy Lee, with earphones
• 2 disposable razors
• A collection of colored pencils with a pencil sharpener
• Scissors
• A small flashlight
• A tube of Duco cement,
• Footies,
• Nail clippers
• A red pen
• Sleeping bag
• And a notebook with lots of empty pages in it but some lists of things he had written
• His birth certificate
• His social security number written on a letter from Social Security
• And his government checks, left uncashed since last Feb.

His pages of lists, included one page with a list of colors, simply different colors with elaborate names (not just “red” “blue”).

Another list had references to the game of chess. It went like this:

“Knight of the Outdoors” (probably a reference to himself)
1. Jumping ahead of pawns
2. Your armor, shield and sword
3. Finding your campsite
4. Guarding by the Bishops
5. Artwork: the Release
6. Finding a Place to Hide
7. Capturing your Queen
8. Guarding by the Rooks
9. Claiming your Kingdom

Another had the heading “Paintings” at the top and went like this:

“Paintings”
Abstract
Biochecmical Glory
Celestian City
Dragon
Entrance to the City of the Heart
Hidden Word # 7
Icon Star
Kaibab Forest
Magic Pumpkin
New Planet
Ocean Landscape
Portrait of a Pledian
Red Star landscape
Serpens Nebula
The Mother Ship
Vortex
Watchshell of Knowledge
Yellowstone Snowfall

(I picture this list as either painting he had seen and liked, OR paintings that he hoped to paint someday. The references to Hidden Words is a book of Baha’u’llah. The City of the Heart is also a reference to the Baha’I Writings, so I know that it was a part of him.)

He had started another list which was about time. Dan always had a majorly complex plan for some kind of calendar that would revolve around in circles, with colors and shapes that meant different things, and only he understood it. I have no doubt that it all made sense somehow and was intricate and complex in design.

There was a page list of all the Baha’i months, which are attributes of God: Splendor, Glory, Beauty, etc.

He also had a tiny notebook with names and addresses of places, social security offices, personal contacts, family phone numbers. On one page of this notebook was a note to himself: “Liver Transplant – UC Hospital”. This means that he was aware that he needed a liver transplant or he was going to die.

After going through all this and waiting for the social worker at Community to find me, I gave up on her and just took the stuff into Dan’s room. They told me he was much worse today. He was in bed and on oxygen. (déjà vu from our mom) When I entered the room, he immediately knew me and totally surprised me by putting out his arms for a hug. I was shocked! So I went over and leaned into him, and he just held me there for a few seconds. He said, “Oh, I didn’t think you were going to find me again.” He was really surprised I had returned, said things like, “I thought you didn’t know where I was.” I told him, “No, I just couldn’t get here yesterday,” and he said, “I thought it would be something simple like that.”

His lunch food tray was there. He didn’t want any of it. He did want a drink. I gave him one bite of mashed potatoes. He was in such a state today that he couldn’t hardly manage to get even one bite by himself. He took one drink of water, but different from 2 days ago, didn’t even ask for that more than a couple times. Eventually, he did ask about his “case” by which he meant his book bag. He was really amazed that I managed to pick it all up. I started showing him all of it. He was surprised and said so. “Huh, I’m so surprised you managed that. I didn’t think you would,” and so on. Something was heavy on his mind, and I’m sure it was the money inside of it he was looking for. But every time he started to try to work with the bag, he would stop and be asleep again. He was also on morphine. I just kept telling him, “It’s all there Dan, it’s okay, it’s safe.” I think he kind of got that, and eventually he gave up on the search. I started to say something about him not needing it right now, and he started to respond, “Now, don’t start saying that, that just makes it all seem impossible.” You can say 1 thing for Dan, he had the strongest will of anyone I’ve ever known. How the hell he survived this long, in his living circumstances, boggles the mind beyond what is humanly possible. To the end, he was dreaming of making his escape. His escape is coming, but not in the manner he suspected.

He looked at me and something in him wanted to say, “Yeah, I’m basically a nice guy. And they know that here, they all know that.” It was almost like he had a concern to be remembered as a nice guy. He also said, “I hope I did that right,” and I had the feeling that he felt he was supposed to get all this stuff here, and now he had accomplished doing that, and was relieved.

The rest of the time today, he was asleep. Snoring. The food lady came in to ask what he wanted for dinner. She realized what was going on and said, “This is the part of this job that I hate.” She was rather upset. She told me she brought her own mother to the facility for 4 mos., & she had died there.

At some point I went upstairs to find the business office. We could set up an account with Dan’s checks, in Dan’s name. Theoretically, if he got well, it was his money to take with him. It was basically a bank account in his name. In our case, she can even pay Dan’s cremation arrangements with Dan’s own money, which amounted to only $781. Total, so we planned to do that. I think that the state was supposedly going to pay for his final arrangements, as a “Medical patient” but they said if they find out Dan had family, they will hound you for the money, so if Dan can pay for it from his own account, in advance, that settles it and no one will come after us for any of the money. This only makes sense, as it is Dan’s money that won’t be used for any other purpose. So, she wanted me to get Dan to possibly sign for the account and sign all his checks. I didn’t know if this could be done. I went back to his room, he was totally sound asleep. I even tried waking him, to no avail. Decided to go back upstairs and say look, can you just do this? He is incapable of doing it, ran into the Community social worker, she called the Business Office and confirmed this situation, and they finally set it up FOR HIM. I signed a paper in Dan’s name to okay opening the account. I also signed a paper to send his social security checks to this place, even though I said he probably won’t get another one while still alive.

I left him asleep, leaving a note in big print, that I had his checks and NOT TO WORRY, they were saved FOR HIM – just in case he woke up, because that is the first thing he would ask about if he did.

Nurses confirmed for me that he was failing really fast. I said, “Do you think it could even be tomorrow?” and she said YES, it seems like he is going to go really fast.

I talked to Jim today, Sue did not answer her phone so I left her a message. Strangely enough, through going through this whole process, even though relations are the pits between us all, I have felt a feeling pulling us all together, as one family. Even if we never speak to each other again (which I doubt), no matter what else we are, or how we feel, we are this one family, united by blood, united by our parents. No one else was born from our two parents, only us. We are united by that reality, no matter what.

Two days ago, Dan mentioned our Grandpa Plantenga. I feel that probably they are some of the ones to welcome Dan on the other side, to a new life beyond this one. I can see certain signs that he was, in his own way, preparing to leave. He knew all this week that he had family. He said to me, “We’re going to have to exchange addresses,” which is funny because he doesn’t have one. He wanted that connection.

I also had a somewhat of a sense tonight, of missing Dan’s presence in this world – just that sense of eternity, a person leaving this world forever, and wondering what mark they left behind them, who would miss them, what had they done to leave any effect, or ripple in the waters?

Tonight, I pray for him to give up the fight to stay in this world. I pray for him to go toward those he catches glimpses of, in the next world. I pray for his forgiveness. I pray for his safe travel. I am going to say some prayers now for his journey to be swift, painless, and smooth. His remains are to be cremated, his ashes scattered in the ocean waters.

I have always felt a certain open connection between this world and the next. There are souls near us, at all times. I have had strong thoughts, feelings, this week, from our Grandma Mary Agnew, somewhat from our Grandma Plantenga. I don’t see “ghosts”, it is simply an awareness that there are souls who await us and are near us at all times. There is something of a connection. We cannot understand it all in this world. There is something of a welcoming when we cross over, from those we have known and loved.

Jamal and Farah took me to a glorious spot on the rocks way above the ocean tonight. I took a short panoramic video. The coast is unbelievably beautiful here, different from the Atlantic in all respects. I am near Mexico, here. The tropics are indescribable in their beauty. There are no words. Every tree is tropical, and has its own flowers for blooms. It is incredible. We then went to a coffeehouse, where there was a fire burning outside in a fireplace of rocks, and sat by the fire to drink our coffee. This place is amazing.

This is Al; Carol called again and said her brother, Dan, has taken a turn for the worse and the nurse told her he might not make it through the night. He is unconcious, under heavy sedation and using oxygen to breathe.

She asked for prayers for his suffering and to assist on his flight to the kingdom of God.

Wanted to write a brief account of my trolley ride. From the airport, you get on a shuttle bus which takes you right into downtown San Diego. You see the ocean harbor, ships, as well. Trolleys are bright red. I bought a $5.00 day pass. This pass lets you ride any bus or trolley for 1 day. Better than a $50. taxi drive to the hospital.

I have always found it an adventure to take trolleys or public transit in a big city. Not too hard to figure out. Each big city area is different and I like to see it. In San Diego, the trolleys and everything, really, is absolutely clean and beautiful (unlike Chicago). There are always characters on public transporation, but you just have to be aware, and be careful. There was a woman who went to sit on the stairs of the trolley instead of a seat. There was another man talking to himself. But all in all, it’s fine.

The trolley ride was about 40 mins, from downtown to the hospital area. We went thru largely Hispanic neighborhoods. Saw one area which seemed more highly African American. But California is more Asian and especially Hispanic than black OR white. That’s California. I’ve heard Spanish spoken in most stores and businesses I’ve been in, McDonalds, the airport, and Chinese, Korean, other languages being spoken. Jamal M. tells me there are about 30 Persian tv stations….?? They love it here. — So at 1 trolley stop, I saw a couple talking w/ a police officer. They were a young couple, but the cop waS on his radio and calling for back up. Another black cop walked up to assist. The couple was being calm and talking nicely, but they were shaking their heads. I wonder what they were in trouble for? But I know they were about to be arrested. In another area, an older Hispanic lady got in and sat facing me, and started speaking Spanish expecting me to answer. The lady behind me then answered her and she just looked at me, as if to say, “Oh.” Later, she moved across the aisle from me. Interesting interactions. I really enjoy watching that. That’s why I’m in sociology.

The scenery is so breathtaking. Very different once again. Well this is all for now. Tonight I am going w/ my friends to a celebration at the San Diego Bahai Center. I hope I’m not too much of a pain for them. They are helping me a lot. I don’t know if I’ll be online again this trip.

Monday.

New post. While I am on here briefly, at Panera. This may be my last time online until I get home. It has not worked out to be online while in San Diego, for various reasons.

So many thoughts, but I wanted to write a short post for today’s visit w/ Dan. My brother was moved last night to a Convalescent Center near the hospital, basically a nursing home. HOWEVER, today he was alive and well, and (excuse me) bitching the whole time I was there. He was persistent, wanting his way, mad to be “stuck” in the nursing home, complaining about the noise (which has has done his whole life), and upset w/me that I would not take him out of there. He wanted to leave, even tried to get up out of his wheel chair and walk out. They are really going to have a time with him. It was not a pleasant day, it was a terribly difficult day to be there. He has the later stages of liver disease. We thought he was dying, that is why I came out here. He is, but it is impossible to say how long this process will take. Yesterday, he could barely speak without spitting up. Today he was ready to cuss everyone out for not getting his way.

The lifestyle he has led, has had one consistency: he does whatever the hell he wants to, when he wants to. He never stayed in any program we ever sent him to. He would leave this one now, if he was at all able to walk down the street, which he is not. But he wants me to go get the “stuff” that he left at another facility (which is true), because there is money in his book bag there, (actually there are 2 govt. checks, social security and disability), so he can call a cab and get out of this place. Meanwhile, the man is sitting there in an incontinence pad and barely able to stand.

The hospice nurse was REALLY, really good in talking to him. She calmed him down, convinced him he was responsible for himself and could make his own decisions, but urged him to stay where he was to get the CARE he NEEDED, “for now”. Another thing to say quickly is that Community Convalescent has this wonderful garden area, outside, where he can go sit for as long as he wants. Unfortunately he is not able to move his wheelchair out there like some of the people can, so he has to get someone to TAKE him out there. But there are flowers, birds, tables to sit at, trees to sit under. It is really nice. He likes being in the HOT weather, he says that is what he is used to (which he is).

So I sat w/ him out there for quite awhile and got him 2 vanilla ice creams while we sat there. He was constantly asking for something. Yesterday it was water. They have to give him thickened water because regular water gets into his lungs somehow. He knows the stuff (thickened water) and of course, complains about that. they bring him thickened milk, which we call a milkshake, so he likes that. Today it was ice cream. I got him 2 vanilla cups. He downed them and kept complaining he wanted ice cream out of the machine. Well the truth is, there IS a machine on the garden area that has ice cream. His lunch was ready and I was supposed to take him inside, but he was crabbing about getting real ice cream. So finally I said the hell with it, and got him a drumstick. What the heck. He loved it. He said, “Oh I forgot how good these things are.”

So sometimes he accepts things, especially when he gets his way a little bit, and feels like he made a deal and got something he wanted. He keeps talking about going to Tucson, & was complaining today that I would not take him there. He was going to get himself a cab and go there. I said, Dan, a cab will not drive you from San Diego to Tucson. “Well why not?” I said because it is too far. “Well I’ll take a bus. Are you telling me I am not capable of getting on a bus?” I said, No you’re not. He did not accept that well. But what he does is finally give up on something, if he can get his way just a tiny bit with something else (like getting his ice cream cone).

When I left, he was upset because he was not going with me. He told me yesterday, the one thing he’s always had is his freedom. Well that’s true, but his body is in this condition because of all the “freedom” he had. He would love nothing better than to get out and sleep in a park again, having his “freedom” and that’s what he wants now. He said today that he cannot deal with rules and games. “Theyre’ playing rules and games, rules and games.” Well, tha’ts true too, Dan never wanted to follow the rules. And never did. Now his health is such that he is in a nursing facility. They have schedules. They have rules.

The hospice nurse told him today that he has a prognosis of 6 mos. or less. (She said that to soften the blow.) It was her responsibility for today to tell him he is terminally ill. He somewhat understood. She said, “Did you know that?” He replied, “Not exactly to that extent, no, I never did.”

So this week is not what I expected it to be, in many ways. The ideal is that I would say prayers and assist my brother’s flight to the next world, be able to help him to cross over, think about his life and go on to other worlds of God. Life doesn’t always work out to the “ideal”. It is what it is. He is what he is. It is very hard for me to think of leaving him here, in this condition, to last what, another week? 2 at the most? It is very disconcerting. I don’t have time to process all that is being experienced, and soon will be on a plane returning home to South Carolina. If I could, I’d fly him back to South Carolina and have him in hospice care there. Be able to visit and be there. That is truly what he needs. But that feels totally impossible. I hate for anyone to be alone at the time of death, when they have family. but I am glad to have come here and at least fostered somewhat of a relationship, with a lost soul. My brother. So this is Monday. We will see what happens in a few more days. it is day to day. As ‘Abdu’l-Baha said, “Kam kam, ruz bi ruz,” Little by little, day by day.

I pray to have the strength to do what I can, and to know what I do not need to do, or cannot do. It is very difficult.

I have to write this quickly because dinner awaits, at my friends’ house. It is 85 degrees and sunny. 🙂 Kids are swimming outside in a swimming pool.

this afternoon, I was able to say prayers with Dan. I asked him if I could say a prayer. He said, “Sure! Go ahead.” So I read him the healing prayer. During this short prayer, he fell asleep. He goes in and out. So I just kept going and read about 3 more prayers. I was very happy to do this for him. Then I left a few prayer cards for the nurses, Blessed is the Spot, and “O God refresh and gladden my spirit.” Honestly, I do not feel that Dan is in a state to say anything about his beliefs. He is very happy to have me there, asked for me today before I got there, and it just reassures him. He knows he has family. I asked him today, “Who are your best friends, Dan?” and he said, “I don’t have any.” He is not in a state to say things that he doesnt’ mean. Everything he says is for real. This is a blessing.

Quickly, I also managed today to get him out in the sunlight. We sat in a garden terrace with him in a wheel chair for a good hour. He keeps complaining of being cold, so it was great for him to be out in the sun and he loved it. But during the hour, he slept some, and spit up so badly that it came out his nose. It is really nasty stuff, the end of this disease. To be there, it has been a good thing. I know my presence reassures him. Like Leah said, my mom and dad would be glad he had some company. Nice it worked out.

I was just reviewing these postings, and found that this entry has disappeared?? Our first visit?? How did this disappear? I don’t know. It is now one year later. I will have to re-write this one.

This is my journal of my visit to see my older brother for the 1st time in 23 years. It will prove to be an emotional journey, no matter how it goes.

I write from the San Diego airport. The first thing that hit me about San Diego is : Asians. Soon as I left the plane, Asian people all over. This is even more noticeable to me since moving to South Carolina, because they are practically non-existent there. I really miss more international diversity.

Soon I will travel to visit my older brother, who is here sick, and who I have not seen in 23 years. This post is actually written while sitting on the floor near baggage claim, because believe it or not, I cannot find a table with an electric outlet near it. My laptop runs out of power very quickly.

First of all, a word about the flight(s). First one on a very small plane flew from Columbia to Washington DC. Sat next to a man who talked most of the 1-hour flight. His daughter just graduated from boot camp and he was so proud. She nearly got the award for best in physical fitness, and would have won, beating many of the guys, were it not that she didn’t quite do some of her 85 push-ups exactly right, so they only counted 77. With 80, she would have won. His daughter is stocky and strong. She has a college degree and also took calculus and aced it without attending class. His son, on the other hand, had ADD, quit high school and got his GED and now works as a chef. The man himself is divorced, lives with his mother and cares for her, moved to DC from California in order to do so, likes buying technological gadgets, just bought an $800. camera but really wants the one that was $1200., and also has some sort of fancy mower which cost him a couple thousand. He has been working on his credit rating recently, has a couple credit cards now, and was impressed that the camera store gave him a $500. credit card (so he could purchase the $800. digital 35mm camera). He hasn’t been to a doctor in 25 years and thinks people are silly for getting stints and such put in, because the human body will grow new veins and arteries to bypass blockage, if we only let it. He also reads novels and likes ones about law and politics.

It always amazed me what people tell you on a plane trip. The 2nd trip was nearly 5 hours long and I sat in the middle of 2 women, neither of whom was interested in talking. We sat right ON the wing so I couldn’t see a thing, especially since the lady at the window would lean forward, reading her book. I DID, however, catch some glances of some magnificent desert land and canyons, which looked like the Grand Canyon but I don’t think it was. Some other state or national park. It was magnificent. Also saw mountains when closer to CA.

Regarding the 2nd flight, since it was a 757 it was quite different. Huge. They tell you the same details every single flight about how to wear the oxygen mask, but they don’t tell you what you need to know. Where are the headphones for the movie? How do you move your seat back? Where are the bathrooms? (This one had 2.) What do they mean by “channels”? English is channel 1, listen to the captain and speak to him (how??) on channel 9.

To top it off, I checked my bag when entering the plane as I usually do. At the end of the flight, instead of bringing it to the plane (like they do on smaller flights) they just send it to baggage claim. So I had to go down there and pick it up.

Okay. Enough about that. I am going to see my brother, Dan. He is 8 yrs older than me and we were never close. I will write more later about our relationship, but for now, I am out here because he was (is?) supposedly dying, and I haven’t seen him in 23 years. This will be a strange trip, no matter what happens. I am going to get up from here and arrange to go see him. First I have to see WHERE he is, hospital or hospice, and then get there, see how he is. I have no idea if he can talk, if he will know me, or what the situation is. He was dying, then they call and say he was having a “rebound” and it could be weeks, rather than hours or days. You can never get anything out of medical personnel that makes any sense whatsoever.

I feel so awkward, it is very difficult. I have no idea if he realizes his condition, if he is breathing uneasily and in pain, OR if he is arguing with them about leaving the facility. This rebound is temporary, we know that. We just don’t know if it’s a day or 2, or a week or 2.

My brother is mentally ill, addicted to various substances, and dying of alcholism. Cirrhosis of the liver. Last stages. It is final, and the last stages are not pretty, is what we have been told. Dan has been homeless for the last 2o years. Also, part of our history is that I was not his favorite sister. I was the clumsy one, and not the pretty one. Our relationship was never good, so this visit will be whatever it ends up to be. But I will know that I did my part, and that is all I can do. All I am responsible for. So here goes nothing.