Thursday, April 21, 2005

Rereading My Own Words

It is sort of funny to see how others end up interpreting something I've posted here. For instance, the previous post that included the chat session with my brother Charles was meant to show how little "real" information I get from him or his current caregivers since he's taking hospice care from home and I am not able to be there and see things firsthand myself. Instead, I have people telling me how moved they were and how they've been ministered to through the sharing of that "private" conversation. I've reread it many times and it is now different for me, too.

However, in the rereading of that post I've realized how inefficient the written word is for truly transferring the emotional moment on to others to experience with me. Missing from the conversation are the labored pauses waiting for each line of Charles' part of the conversation as he hunts and pecks with a single finger. Gone are the thoughts that ran through my head as I waited for each line from him. Thoughts of the questions that never got answered because they were never asked but only existed in my heart.

But obviously the real message came through. The message I didn't even know myself at the time that was being conveyed. The message that there can be peace in dying. There can be love in the midst of fear. The message that blessing can come from the most unexpected places and family members during this time.

The blessing of the alcoholic brother that remains as sober as possible and sleeps in the same bed as his dying brother so he can hear him if he stops breathing in the night.

The blessing of the immature delinquent son who sacrifices his self-centered ego and greed long enough to plant a huge vegetable garden under his father's gaze and direction. Just like the garden Charles would have planted himself as he has done every year at this time. The garden he will not see harvested.

He had to have known that the whole time the soil was being tilled, the plants were being purchased and each one placed just so in the ground and watered. He had to have known and had to have considered it in his mind as the final plant was put in and his son stood up sweaty and dirty and told him he was going fishing for the night.

Yes, I do read my own blog... over and over. That's what it is here for... me.

Sunday, April 17, 2005

Charles is Home

I have not been able to openly discuss Charles and his current condition since I really am somewhat in the dark on the details. The reason I am in the dark is because the people (family) currently responsible for his caregiving are not as verbose on his condition and I usually get something like, "He's about the same," or "He's doing fine," or "He's looking good." Sheesh, what kind of information is that when I've been informed by the doctors that he was only given between two weeks and one month to live and that was nearly a month ago?!? Even Charles himself only tells me he's feeling good. Hey, I'm not complaining that he's feeling good but my gut tells me that "feeling good" is a deceptive description of the reality we face.

I am sounding like a blabbering idiot here so I will tell you what I know. Charles went home last Thursday and has been ecstatic ever since. He spends much of his time outside sitting and resting and looking over his property which is a nice country setting. Carroll seems to have risen to the challenging occasion and, as Charles put it, "He been a surprising blessing." Jason is still somewhat missing in action as he goes about being worthless and self-centered. Using MSN Messenger, I chat with Charles daily. I would call but he can't talk and has limited minutes on his mobile phone (he has no land-line) and complains about using them "needlessly". Anyway, here are some excerpts from a chat we had last night that will give you a better idea of what's going on.

Charles: Hey Bone
Tony O: Hiya, Bro'!
Charles: Whatcha doin'?
Tony O: Just surfing the net and blogging
Charles: blogging?
Tony O: Remember, I told you about blogging. Sort of an online journal that other people can visit and comment on.
Charles: o yeah
Charles: been nice today and I'm feeling good
Tony O: Just how good are you feeling? What does it mean when you say you are "feeling good"?
Charles: means I am surprised how good I feel. I thank God every day that I wake up breathing
Tony O: I thank God every day I wake up breathing too! (winking smiley)
Charles: after my pain meds kick in I am usually pretty good for the rest of the day
Charles: my legs and feet are swelling so I keep them elevated
Charles: what did you do today?
Tony O: yard work mainly
Charles: Carroll cut some grass today. Jason and Hank went fishing and will be gone all night
Charles: I am really glad to be home. It has given me extra energy, I think.
Tony O: I hear you spend a lot of time outside enjoying nature
Charles: as much as I can. Do a lot of sitting and resting mostly but yes
Tony O: sitting and resting are good
Charles: Carroll has surprised me and is a blessing with how he's really pitched in
Tony O: I guess you are proving the doctors wrong
Charles: wrong in what?
Tony O: In how much longer you have
Charles: What did they say?
Tony O: I feel stupid or bad for telling you. I thought you knew all along. I thought you knew when I was there with you.
Charles: I don't know. All they said to me was they weren't sure how much time I had when I asked.
Tony O: I probably shouldn't be talking about this
Charles: tell me what they said. don't lie to me. you promised.
Tony O: I have never lied to you, Charles and won't start now. Teresa and I have been the ones telling you the truth all along
Charles: I know
Charles: tell me what the doctors said
Tony O: after they removed your respirator and put in the trache and discontinued all treatments because the tumors weren't responding and the new growths had appeared Dr. Kyassa said you had two weeks to maybe a month
Charles: doctors don't know everything. It's in God's hands not theirs. God must have let me stay for a reason.
Tony O: You are teaching me so much, Charles
Charles: how
Tony O: you are teaching a lot of people a lot of things. How to be strong and not give up. How to have dignity in dying. I am so grateful for your example in my life. I think you still have a lot of things to teach some people. Maybe Carroll and Jason?
Charles: I think so maybe
Tony O: You are God's messenger
Charles: the message is love
Tony O: that's all there is... love or fear and you are bringing love
Charles: I need to rest. I love you, Tony
Tony O: Okay, you have a peaceful night, Little Bro'. I love you, Charles.
Charles: I will catch you tomorrow on chat
Tony O: I'll be looking for you... Love ya', Man!
Charles: xoxoxo

So now you all know as much as I know. I wish I were with him.

Wednesday, April 06, 2005

Charles Wants to Go Home

I'm giving up.

Charles has made it known from the very start of his ordeal that he wanted to die at home. He is quite different from I in that respect. I personally wouldn't want to die at home but would want to be in a hospital with the best care possible and chance for the greatest drugged comfort from pain that my insurance company could buy. I wouldn't want to put my wife and children through the emotional torment of watching me die in their house (because it would be solely their house once I was gone). However, Charles doesn't see it the same way I do and feels his "last request" is to be in his own home and free from the prison of the hospital or hospice. I mean, I can see it his way to an extent. If things were different. If things were the way he's fantasizing.

Charles has a son, Jason who is 21 but acts all of 12 on the best of days and still lives in Charles' home. He's a druggie trying to become an alcoholic who has been robbing his daddy blind as he trashed his business after Charles could no longer work it. He lives in filth and trash and lies with every breath he takes. He's seen his father twice in the last two weeks and always has an excuse for why he can't make it to the hospice even when Charles begs him to come. Jason is Charles' primary caregiver. I can just hear you saying now, "WTF?!?", but it is what Charles wanted. He had Jason promise he would take care of him and Jason looked directly at him with a room full of witnesses and said, "I will, Daddy." Like I said, he's a habitual liar but Charles refuses to see him for who he really is.

Thus the beginning of the problem I have with Charles going home to die. In the past nine months, Jason would leave Charles all day every day and walk past him lying on the couch without so much as a word as Charles lay dying from starvation and dehydration. When he was home, he was locked in his bedroom with several of his buddies playing with guns (one of his fetishes) and other "secret" things. Hell, one night while I was there taking care of Charles, the idiot shot a thirty-ought-six deer rifle through four walls of the house from his secret dark filth pit he calls a bedroom. "It was an accident, Daddy! I didn't know it was loaded." Famous last words of many a fool who shot themselves or others playing with guns. What pissed me off more than that was his moronic laugh afterward while he joked about not being able to hear because of the loudness of the gunshot. I was so angry and also so afraid for Charles. Jason himself is a loaded gun waiting to go off and I don't want him pointed at Charles when he does.

Jason was the primary reason I have tried to convince Charles that he needed to stay at the hospice where people would care for him and make him comfortable in his final hours. Because I knew (and Charles really knew too) that Jason wouldn't no matter what Charles wished were true. The fantasy of sitting quietly in his easy chair, Jason holding his hand, watching the sun set over his country property through his patio double sliding doors, contentedly drifting off to a peaceful sleep... never to wake up...

Pure fantasy. Oh how I wish it could be like that fantasy, though. How I wish I didn't have to see in Charles' eyes the disappointment in his son and the disbelief that he cannot count on him to honor him and care for him and love him in his dying moments. How sad. How inhuman and cold of Jason. How helpless I am to ensure that Charles gets to live that fantasy.

Second reason for trying to convince Charles to stay in the hospice was he thinks that if Jason doesn't step up to the plate and accept his manly responsibility of taking care of his dying father then perhaps his own Mom and Dad will. In fact, my Mom has promised him multiple times that she would ensure that he didn't die in the hospital and would take care of him. She lied, too. She would cry, "I know, Baby," and tell him she promised he wouldn't die in there and she would be with him and take care of him. Then she would walk out into the hall and cry to someone else how she couldn't do it and that Charles couldn't go home because no one could "handle it" to take care of him. She usually then launched into a long list of lame whine-filled reasons why she and Dad couldn't be there for Charles when he needed them the most in his entire existence. Seeing and hearing this behavior made me sick to my stomach. Such is "the family" and such is what I have come to expect of them. Absolutely nothing.

Ah, but there's still more reason for concern...

Enter Carroll, our youngest brother. Carroll is a gutter bum drunk and will sniff, smoke or swallow anything to keep a continuous high going. He has mooched off of family and fleeting friends for food and shelter much of his last 15 or 20 years. I can't paint a terrible enough picture of his life as an addict. His bottom must be lower than whale shit at the bottom of the Mariana Trench because there's no sign of him ever sobering up. He will die either at his own hand or at the hand of someone else because he's also a nasty foul-mouthed drunk that loves to verbally abuse women. We always thought that Carroll would be the first of us siblings to die. We were wrong.

Anyway, Carroll moved in with Charles recently to help out around the house. He can do this fairly well since he's always been good with building repairs and maintenance. When he can stay sober enough to work. Charles and Carroll have had several past altercations over his drinking. Once Carroll put Charles in the hospital by beating the living hell out of him when he went berserk in one of his blackouts. Another story for another time, maybe.

So, Carroll moved in with Charles just a few weeks before this last and most likely final episode of hospitalization. Carroll was the one who told Charles "the family" was going to "pull the plug" (not my words) a few weeks ago, remember? Well, before I left I mentioned to Charles that he might ask Carroll to spend time with him at the hospice since he doesn't work and usually needs a place to stay. Charles' eyes lit up and he had me call Jason to ask him to come visit and to bring Carroll with him. Jason said he was too busy. Charles had me call him again and this time "beg" him until Jason said he would try to make it up there. He never showed up.

This was the way I left Charles that Saturday morning when we looked each other in the eye and said goodbye. My heart was filled with mourning and grief knowing there was nothing else I could do for my brother because my own life could no longer be put on hold. Charles told me that he liked the hospice and would stay there as long as he didn't feel abandoned by the family.

Every day I see Charles' skeletal face and toothless mouth silently forming the words, "I wanna go home!" as he looked at me pleading for understanding. No words come out because he can't talk any longer but he may as well be screaming because that's the impact it has on me. Night before last I went to sleep with that image in my mind and ended up dreaming for the first time about Charles since this ordeal began. "I wanna go home!" was all he kept trying to say to me. "I wanna go home." I woke up weeping.

My sister, Teresa called me the day after the dream (yesterday) and told me that Charles and Carroll were "plotting" on leaving the hospice next week. Charles still hasn't figured out that he can just tell the hospice staff he wants to leave and they can do anything about it. He can have home hospice care but that is only a few hours a day and not nearly the level of care he would receive at the hospice itself. So, plotting is unnecessary and only adds to the stress of everyone concerned.

I tied my Dad and Teresa into a conference call and we all three discussed Charles' desire to die at home and the current situation. It was decided that we would no longer encourage him to stay at the hospice and would not stand in his way of going home if that is what he really wanted to do. However, we didn't want him to do so without properly setting up home hospice care in advance. We all want him to have his last wish but we want him to have it with the best chance of being comfortable when his time comes.

My Dad said he was going to see Charles in a few hours and would talk with him about it and I could hear relief in his voice that this was something he had needed help in deciding. Teresa still has concerns about the weekends when no hospice aide workers will visit and suggested she and I take turns flying in to take care of Charles on the weekends. We'll see. I have a feeling shared by her and Dad that Charles may be stubbornly holding on to life to "prove" to the hospice that he's well enough to go home. And then very shortly after arriving home he will allow himself to die. Home at last. Free at last.

The call I received from Dad as I was leaving a business dinner was good news. He told Charles that we would no longer offer any resistance to him going home and if that's what he wanted to do then so be it. Charles wrote that he would do whatever the doctors wanted and it appeared that for now they wanted him to stay in the hospice until at least the antibiotics for his staph infection were through. What he doesn't know is that the doctors are expecting him to be too weak and too drugged for pain to go home by the time his antibiotics are completed.

His body is continuing to rebel against him and is taking less and less nourishment from his feedings. He continues to lose weight and is now probably around 87 pounds or less. He's getting weaker with every passing day. How long can he survive strictly by sheer will power alone? He's been amazing, so far, in his stamina and hard-headed attitude that he wasn't going to ever give in to the cancer. I think Charles will choose his own time and place to die no matter what the doctors say.