Doctor Grandma

I cannot write a lot right now but will finish with this for now. I left Dan at 9:45 am this morning (California time), Friday April 24th, 2009. He was still breathing. One of the last things I did for him last night, was to cut his toenails. They were long, thick and totally disgusting. He really appeared exactly how he was, an older, alcoholic, homeless man. I felt really ticked off at him for not cutting his own toenails, as he kept a toenail clippers in his bookbag, and I told him so. I said, “Look, Dan, this is ridiculous, you could have cut your own damn toenails.” He was completely unresponsive today, totally out of it and no longer able to talk at all. So our last conversation was Wed., regarding him being aware that he got all his stuff returned to him in his room.

Anyway, I cut the dang, disgusting toenails. I had this funny thought, “Dan you can’t go to the mortuary looking like THAT!” I honestly didn’t want the cremation people getting his body with these long, disgusting toenails, some of which curled around the top of his toes, because it was very telling that he had no one taking care of him, and did not take care of himself. I had asked the nurses to do it but they ignored me, & I finally figured, “What the hell, I’ll cut them & be done with it.”

Later, I met Susan, the hospice social worker and told her. She said, “You are BOLD!” I said yes I am, but she told me that nurses will not cut toenails because of some liability possibility, and they have to call in a podiatrist. Our medical system is so screwed up, we could write an entire essay on that. Dan never would have had his nails cut because they’re not about to call a podiatrist on a dying man.

So I left Dan still breathing, at 9:45 this morning, and spent the rest of the day getting home. It has been so exhausting , there is a lot of emotion building up in me that I haven’t had a chance to let out because of always being WITH people, so a couple times on the plane(s) I nearly broke. It’s not that Dan and I were close. It’s just that a life is ending eternally, and Dan is a person who never fit into this world. How much is his own fault and how much is the world’s only God knows. Seeing him every day this week has left an emotional mark on myself and caused some sort of connection. Dan knew his family knew OF him. I don’t think he really believed that. When I first got there the very first day, the nurse at the hospital asked him, “Do you want to lay down now, Dan, and get some sleep?” and he said emphatically, “NO, I want to be with HER.”

As my plane landed in Columbia, back in South Carolina, I played a message from Sue and it said Dan had passed from this world at 10:44 pm. They had just called her as it was happening, and said they were “calling it”. They had come in to check and found him not breathing. So it probably occurred somewhat before that.

They say dying people wait for someone to get there before they die. I think Dan was waiting for me to leave. He couldn’t be “with her” meaning representatively with the family he has, anymore, so he finally quit. I also told him some of the family was already on the other side.

I was very happy to see my husband tonight. The air in South Carolina was warm, warmer even than San Diego, and there is a sweetness in the smell of the air, here.

Our brother, Daniel Thomas Agnew, died today, April 24th, somewhere around 10:44pm (South Carolina/ Indiana time), about 10 hours after I left him in California.

Thurs. night, Apr. 23rd
I am sitting in Dan’s room. He is struggling to breathe somewhat, but it is quiet and smooth. He is doped up with morphine. Hasn’t been conscious all day long. It is a waiting game now, just waiting for him to stop breathing. It may be tonight, or it may be tomorrow. I decided to stay here for the night, as they have a chair for me that I can lay back in, and a blanket. Jamal will pick me up in the morning and just drive me to the airport. I just think it is a shame for any person to be alone at death. I wish he would give up the fight but he is fighting to the very end. It is really unpleasant to be here, I am just doing my utmost and then will rest knowing I did all I could this last week of his life. Honestly, I will be glad to go home tomorrow. I told him in his ear, though he couldn’t respond, that this was the end of his life, he needed to go to other worlds, that this life was done, and if he saw other relatives there, to go to them. I even told him about the arrangements for his cremation and that his ashes would be scattered on the sea, and that his money had paid for it all, that all was arranged.

I am going to go out for a short walk now before it is dark, and possibly get a coffee in a coffee shop next door, if it is still open. There is a lay-down-chair in the hallway outside the door. I will bring it in later tonight, when the guests of the other man in this room, leave. They can’t even provide a single room. It is really disrespectful to the person dying, to the family members here, and to the man next to Dan, to have no single room for us to be in, in these final hours. It totally sucks. I asked for a single room and they said they had no space right now. Great for the guy next to us. Dan is taking a breath, then stopping for 10 seconds or so, then will take another breath. He seems comfortable for the most part. My sense is that he is struggling with his life being over.

I know that I am totally exhausted and will fall apart when I am really home. I’ll need to lay in bed for a day.

10:15 pm
The people next to Dan are a couple of brothers who got injured somehow in an “assault,” I heard one of them say on the phone. One of them lives here, I believe. The other one is visiting. He evidently won’t leave until his brother goes to sleep. I cannot figure out the “chair-bed” or lie in it until they leave. There was another woman here for the evening, either a sister or the wife of the one who lives here. She constantly bitched at the man who lives here whose name is Alan. If she is his wife, she needs to make something better of her life and be happy instead of resenting every moment they are together. They don’t seem to put anyone to bed in this place. There are some people in wheel chairs still in the hallways.

Dan just keeps breathing and slightly moaning. I feel like this will never end.

10:45pm
People that leave family members in these places for long periods of time should be shot. They suck. The people here are nice but it smells stuffy. There is a lady across the hall who occasionally starts yelling, “OH, no, oh no,” and then she will scream. Sometimes it is when they are changing her pads. She just starts doing it every once in awhile. Then her roomate will say to her, “Oh shut up.” There are some people who look rather young but are severely physically handicapped. One guy has a ponytail, looks to be about 40, maybe, never speaks, and has his foot in some sort of cast. He smokes cigarettes but never speaks. I saw one black man in here, severely handicapped, in a chair in the hallway. He seemed satisfied for the most part, and could tell the nurses what he wanted. He might be paraplegic. Another older lady goes around in her wheelchair and constantly worries about the animals. There are two dogs who live outside in the garden area, a rabbit in a cage, 10 parakeets inside in a large cage, and 2 other larger birds who started making loud bird calls to me earlier this evening when I sat next to them. Lights are on all night, Dan’s oxygen machine is going. They are just giving him morphine occasionally.

I think the guy whose brother lives here is also staying for the night. Not sure what to do about that. I will either sleep in the chair anyway, or go out into the parlor area (by the birds) and sleep on the small couch out there. It is now nearly 11pm. Night to remember.

Mostly white people in here, though I’ve seen a couple of black women as well. I think I’m going to go out and lay on the couch.

6:40am
About 3:30 I awoke (from a light and uncomfortable sleep) and thought maybe Dan was going. But no, he continues to take a breath. His breathing at that point became somewhat more shallow. So here we are. Maybe he is waiting for me to leave, rather than for someone to get here, as they say. He has no IV, his intake is nothing since yesterday morning, his output is nothing, and yet he continues. I wonder if in his mind he knows what is happening at this point, or if in his mind he still plans to get out of bed and escape this place. I spoke in his ear yesterday evening and told him all that was happening to him and what the arrangements are for him. Yet, knowing Dan, he is still planning to prove us all wrong. I feel bad that he may be alone at death in the end, but perhaps that is fitting, with his lifestyle, and the plan all along. Nurses give him morphine every 2 hours, in a squeeze tube into the mouth. His cremation bill has been paid, & all is done, except this man keeps breathing. My friend is scheduled to come pick me up and go to the airport in about 2.5 hours. I will leave a list of 2 Bahai prayers, plus the Lord’s prayer, on his bed. Perhaps someone will read them when they find him. All I can do is ask. Our Grandpa Plantenga, who Dan mentioned the other day, used to always say the Lord’s prayer at meals on holidays. With Dan’s use of churches for food and anything else they would give him, I thought that would be fitting. I really can’t wait to be on the plane. I have said prayers every once in awhile all night long, I have begged God to help him give up the struggle, all to no avail. I’ve been here at his bedside, waiting, waiting, and he is being stubborn. It may take some longer than others to sort through their life and go on to another one.

One last note: There is an expression, “the smell of death”. Well it is in this room. I think it is in Dan’s breath.

Today is probably the day that Dan will leave this world, for other worlds. He is no longer conscious, is in bed, still on oxygen and all they are giving him is morphine for pain. He is difficult to look at. His mouth is open and he struggles somewhat, to breathe. My feeling is that it will be tonight sometime, but by that time, I will no longer be in his room. It appears that he has hours to live.

Last night I spent 2 hours in prayer for him. I feel we have done about all we can do and it is now up to him, to give up the fight to keep breathing. Watching people this way really shows that it is a process. Some of it is up to the person him or herself. Each person has his or her own struggles with the transition, and unless it is sudden beyond their control (heart attack, car accident, or whatever), then it is a process of days. They are having their own conversations, with themselves, sometimes with relatives who have already passed on, or possibly thinking through their own life. I won’t know until I get there. But the body goes through similar changes. The nurses all know it. The person gradually breathes less regularly, and eventually their kidneys quit, and there is no output. Dan has been that way for nearly a day, now. If anyone will fight resignation, it will be him. He has survived many crises.

I told him Sue called about him today, even though he cannot respond. I actually got close to his ear, and told him, he is going on a trip, but not the kind he expected. I told him he is going on to other worlds of God. I said this life wasn’t so great, it is time to travel to others worlds. I said, this is what you always wanted to do, Dan, go traveling to new and exciting places.

Quickly, the other thing we got done today is paying for his own cremation and service, with his own money that was set up into an account, at this Community Convalescent facility. So all is prepared. He is to be cremated and his ashes scattered at sea. Sue and Jim and I had to give permission all together, each of us faxing the info. Another symbolic thing that brought us together, whether we realize it or not. How ironic is that, that the 3 of us had to give our permission for instructions for what to do with his remains.

I managed to walk to Panera to put this online, so now have to go back. I don’t know how long I have until my friend picks me up and needs to drive home.

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.