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.

16 comments:

GuusjeM said...

You definitly need a large bowl of Pho - it's as good a comfort food (if not better) than chicken soup.

Tony said...

I believe it! I love using the Sriracha hot chili sauce and it will really clear up your sinuses :) Pho has to be the ultimate feel good soup in my book. Comfort food sounds pretty good right about now...

Abby Taylor said...

Wow. Very moving. My two cents, worth even less than two cents in the current economy, is that it makes sense to do what you all are doing... trust Charles to know what he is needing in his final days. He's hanging on for a reason.

-E said...

Wow. It seems for some reason or another life has put you into quite the predicament at this juncture in time. And judging from your writing (which is quite good by the way), you are handling it in ways I could only hope to. Stay strong.

Tony said...

Abby, your two cents will always be worth the full two cents here at BMNB, at least! =) Yes, it does make sense and would have been resolved much sooner if only Jason would have not been such an a-hole and liar. But, I cannot live with the image of Charles begging me to let him go home in my mind after he's gone. Now my fear is thinking about the possibility of having to live with the image of him dying alone and in pain unattended lying on the couch in the dark...

Welcome to BMNB, -e and thank you visiting. We never know what life is going to throw at us and I have never been one to run from it. Like everyone else, I don't want to go through or think I can handle things that life forces us to endure but I know that I have no real choice if I am going to be true to myself. I must see it through. That's why I get so angry with my family members who have not stepped up to the plate and taken the responsibility of caring for Charles and visiting him with the lame-ass excuse of, "I just can't handle it." Well, newsflash!!! Charles doesn't want to handle what he's going through, either, damn it! But he is handling it and he's handling it with a courage and grace that all of you "I can't handle its" need to take your heads out of the sand and notice. Charles is showing us all how to die by facing Death and not flinching. My God people... wake up and see the gift he's giving all of you. The gift of his life and of his dying!

I can handle it. I will handle it. I must handle it. For Charles.

But... I am NOT strong. I am jelly inside. A quivering mass of tangled emotions sloshing around inside a shell of a man who is stumbling through a fog of grief and mourning.

Um, sorry to have launched into such a long response, -e. I just let things come out when they must. It is but one of the ways, I "handle it."

BTW, I don't consider my writing to be very good at all. Not like, "Wow, he could write a freakin' book" good or anything but thank you very much for the kind words and your visit.

Kitty said...

Tony, my heart aches for you.

I understand about "family" -- at least my parents are the greatest (not always, but now) -- but, extended family . . . don't ask.

I trust that things will work out so that Charles can/will remain in the hospice and not be exposed to his son or other brother.

You will continue to be in my thoughts and prayers, as will Charles!

Tony said...

Thank you, Ms. Kitty, for your thoughts, prayers and gentle words. Things will work out as they should. I trust that and know that in my heart. If that means they will be as I wish or not remains to be seen.

Kim said...

(((((((Tony)))))))) I wish I could hug you in person. This ordeal is exhausting to read, I cannot imagine the toll it's taking on you. Your brother sounds like quite a fighter. I think you are right, that he will decide where and when he'll pass on when he feels like it. It is so difficult to understand what goes through the mind of persons dying in late stage cancer. When my Angie was only 3 days short of her final time, she was convinced one moment that she would beat it, and resigned to death the next. I finally held her and told her "Just Go". When I tell people about this conversation, they think that must be the cruelest thing they ever heard. It wasn't. It was freedom to her. She thanked me for it. I'm so sorry that the extraneous bullshit you are suffering exists. It seems so heartless to me, so selfish. I ache for your brother and for you as well.

prying1 said...

I like to look on it as those who precede us are going on a wonderful vacation. One of these days we will join them on the shores of the other side. Until then rest assured that they are in the midst of a "great cloud of witnesses' cheering us on in our race to the finish line...

-E said...

HAHA, that is quite ok to launch into a long response. And I don't think that being jelly inside means you aren't strong. I think being able to wake up and make the choice that you are going to handle it today makes you strong. And you do that every say, which makes you strong.

I am sorry your family seems to be so...I don't know a good word. I hope his son doesn't realize later in life what an ass he has been and regret it forever. I mean, that isn't something he will ever be able to take back.

Le Sigh.

Tony said...

Kim, I understanding about finally coming to the point of being able to tell them "just go" with a peace in your heart and a thankfulness in theirs. I think often they are holding on for us and not for themselves. They don't want us to hurt. So, when it comes to the time to let them go we are sort of giving them permission and it is a relief on both parts. I am not saying I am there but I do believe part of Charles' tenacity is based on that. One time we were holding holding hands and I thought he was drifting off to sleep because his eyes closed for a couple of minutes then he opened them and looked up at me. I said I had thought he had gone to sleep and he shook his head no and mouthed something I couldn't quite make out. He reached for his pencil and paper and wrote, "I was praying." And I said that was good and he smiled. Then he wrote, "I was praying for you," and he looked at me with a look that I will never forget, Kim. It was a look of compassion and sympathy... for ME. Then I understood something I had never understood before and I can now understand what you are saying about just letting them go.

Thank you.

Prying1, Charles has already promised me that he will be waiting for me and I agree with you. All that have gone on before are waiting for us to finish the course here.

Beverly said...

Hang in there cuz!! I know it is tough and frustrating but you are stronger than you think you are. Stronger than I think I could be. Thank God Charles has you and little 'sis there when Jason and Carroll aren't. And don't worry about Charles being alone...God never leaves our side and cradles Charles in his arms along with a host of angels who will protect him.

MoxieGrrrl said...

I got nothing to say, just more cyber(((HUGS))) because you know you need them.

Tony said...

All hugs are greatly appreciated and thoroughly enjoyed, cyber or otherwise.

Thank you, Cousin Bev for popping in and leaving a good word. You have been a greater support to me and Charles than you give yourself credit for. I cannot thank you enough for what you have done and the love you've shared.

Mox, your cyber (((HUGS))) say plenty, GirlFriend. Thanks bunches but don't squeeze me so tightly next time :) ouch!

CW Fisher said...

I'm currently going through a similar thing with my dad, who just came home today, to die, as the doctors see it, to live as he sees it. I'm struck by the encouragement he gets to hurry up. He thought he might be interested in a laptop. My brother ran out and got him one. Doctors shouldn't play the time game. They don't know. Guessing isn't planning, it's willing an outcome. A deadline. Let him go home and leave him enough food and water nearby, and keep a hidden camera on him. And junior.

Tony said...

I plan on an update on Charles' journey this weekend. You are spot on in your assessment of screw whatever the doctors are saying as his timeframe for dying. He's happier now than he's been in a year and is home where he wants to be. He's outside enjoying the beautiful Spring and instructing his son and baby brother on planting his garden. He told me that he feel "good" and has no intentions of giving it up but instead is going to live each day to the fullest of his capabilities.

Thank you for your encouraging words.