It's so strange to think that he's going to die. Even as close as he is now, even after watching his decline, slow at first but so much faster every day, the idea is hard to grasp. It's almost surreal, the idea that he is going to go from alive to dead within the next few days, that he'll die at 40.

 Last night, while cleaning out a drawer, I found the love letters he wrote me while we were dating. The cleaning came to a halt pretty much immediately, and I spent the rest of the night curled up in a ball with them.

 Our 7th wedding anniversary is June 4th, and that will also be the two year anniversary of his first chemo treatment. I was just thinking to myself that more than 1/4 of our marriage has been spent fighting cancer. We were supposed to have so much longer. We were supposed to get old, and have grandkids, and retire, and spend our 50th anniversary on the beach, maybe get arrested for having sex in public. How is it possible that it will end like this? This can't be real.

The kids emotions are all over the place. So are mine. But I don't have time for my own, when my kids are in such pain. I have little stolen moments; the shower, or when I am taking out the trash. A lot of my time tonight has been spent holding one of the kids at any given time. My shirt is tear stained, and my heart aches for them. There are no words for this pain. The pain of losing my husband is nothing compared to how I hurt for his children.

 I don't even know what else to say tonight.

 I suppose I do, maybe.

 They're crying, off and on. But they are also laughing. I've said before how resilient kids are, and they're showing me just how true that really is. They have moments for sure, but just as much of their time has been spent laughing together. Playing, eating cookies, splashing their bath water all over the floor; normal kids things. And I know that as time passes, though they don't believe me now, their grief will lessen and they will have fewer, more spread out moments where they have to break down.

 I'm more emotional than I thought. I have felt kind of numb for some time, and I kind of miss my apathy. It was much easier not to feel.

what NOT to say or do with a soon-to-be widow

So many people have been so much help to me. I know everyone's intentions have been for the best. But even so, some things would just be so much easier if people just knew not to...

1. Tell her that if she needs anything to just ask.

This puts a lot of pressure and a lot of burden on her. It's hard to ask and it's hard to realize what you need to ask for help with. If you see her struggling, offer something specific. Or just jump in and do something. Don't wait to be asked.

2. Ask her for updates.

If you're close family, you'll get updates when there are updates. If you're not close family, shut up and just wait, you'll hear about it without a lot of wait after close family has heard. In fact, regardless of how close you are, if she has been updating facebook regularly, just look there. If it's not updated, assume there is simply no update and be patient.

3. Tell her how strong she is.

She's really not any more or less strong than anyone else and she's heard it 10002378 times and it gets old. She's just doing what she has to do. Instead, tell her she looks skinny today.

4. Tell her what she is doing wrong or that her grief is abnormal.

it's not. Everything she feels and says is normal and valid.

5. Facebook mesaage her. When she does not respond in a manner youbconsider timely, message asking if she got it. Continue messaging or texting or posting directly to her wall to ask if she got it.

This one speaks for itself.

 I'm typing this post from home while Karl lays in bed at a hospice in-patient facility, dying. He barely knew we were there earlier, when my mom and I took the kids. He kept talking about "that bitch who tried to get me off," meaning the nurse who put the catheter in because he is unable to pee on his own. He had wet the bed before that, so he's lost control of his bladder now. I don't feel guilty like I thought I would, about sending him there. I just can't handle him anymore. Physically. He kept trying to get up and waner here at home, and yesterday morning he actually fell. I called 911, and we got him to the hospital and the social worker there got hospice set up for us. I feel relieved. So much relief that taking care of him is no longer my responsibility. I can no longer handle his constant dementia. I was getting no more than 3 hours of sleep at a time, more often closer to an hour and a half. Last night, though, I was able to sit down, enjoy a small drink, relax and get a full eight hours of sleep. And I'm going to get it again tonight, and tomorrow night, and the night after. Life is already going on, and that's what Karl wanted for all of us all along.

 Today I had to sit the kids down and tell them straight out that their dad is going to die soon. They were all hysterical for awhile, but Luke came to terms with it fairly quickly. Olivia was able to understand it pretty fast, too. Seth is the hardest. For a chunk of the day he kept cycling through all of the stages of grief quickly, over and over again. I don't know if you've watched Monk, but there was an episode where Monk's therapist was quitting, and Monk went through the stages over and over, very quickly... it was pretty much the same thing. Almost comical, except that it's my nine year old and he's really hurting. I think a lot of it was forced, something he was doing because he thought it was what he was SUPPOSED to do. Tonight he's calmed down. He has a few moments here and there but is acting fairly normal, as are the other two. Because though I just said the words out loud to them today, they're not stupid kids and they've known for some time.

Last night, Karl was convinced again that we weren't home. It couldn't be home, he said, because things kept changing. Every time he came in things were changed here and there. Seth was trying to reassure him, telling him it's okay, we're at home and we're safe and Karl go angry.

"Stop fucking lying to me, you little asshole," he snapped. I was completely, utterly shocked. Seth was shocked and upset. Karl realized what he'd said fairly quick -- he wasn't entirely "with it" but he realizes who we are a lot of the time at least -- and cried and apologized but you can't take words like that back.

He hasn't known where we are for most of the last few days. My kids are watching all of this happen and I'm at a loss. I know Karl doesn't have much time left. A couple of weeks at best, and possibly only days. I can't have him calling the kids names and swearing at them for the last of it. But the idea of putting him in a nursing home or hospital is awful for me.

This is not the man I married. This is not a man I have been in love with for some time now. However, I do care about him, and the idea of him having a lucid moment and knowing where he is and that I put him there, as if I just got rid of him, breaks my heart. But on the other hand, the idea of this, who and what he is right now, being the kids' last memories of him, is just as bad.

I know that he is going to die, and even if he spends a couple of weeks sad in his lucid times that he's not home with us, he is going to die and then he won't be sad anymore at all. He won't even remember being sad. But the kids and I are still here and we're going to go on and live out our lives and we do have to remember everything that's happened.

I wish he would just die today. I don't mean that with any malevolence or anger. I'm just tired of making the hard decisions, I'm tired of watching this all unfold and I'm tired of having it run my life completely. Today, please God? Let it happen today.

This morning, Karl was up around 5, trying to leave the house. I woke up when the door opened, thank God I was sleeping in the living room. I asked him,

 "where are you going?" He didn't know, he thought he had to go to work, though. And talk to the people out there. At least he was using his walker...

Around 5:30, he needed to know where the closest bathroom was.

At some point in the night he'd gone to use the far bathroom through the kids' room, which is scary because their room is full of land mines, and I can't believe I just slept through it. He dropped his cane in there, too. He uses the walker but briings the cane for tight spots, and for moving crap out of the way. But anyway, he'd dropped it in there. I am a dead sleeper usually so I'm not really all THAT surprised I slept through it, but damn. I need to figure something out so I can be awake when he gets up.

Today has been rough. The day or two before, Karl was more lucid than he has been since the lake, hardly any hallucinations and more alert, but today we're worse than before. When we first woke up this morning, he was asking if I remembered him being on the floor in the middle of the night. I convinced him he couldn't have been, because he wouldn't have been able to get back up without me, and I hadn't helped him. So that was fine.

Then an hour ago, I'd just gotten out of the shower and overheard Karl and Luke talking about his recliner. Karl is convinced that sometime in the night, people came and switched his recliner out, and that the one he is in is not the same one he's had since January. He is convinced I'm in on this, and that I'm lying to him. He's not angry. He's very calm about all of this. But he's just dead convinced that I know his recliner isn't the same one, and I'm lying. This one is different. The control for the positioning is different and this "new" chair is cleaner. And poor Luke just doesn't know what to say, so he agreed with his dad about the chair looking different, so that helps nothing.

He was also convinced, around noon, right after a nap, that it was 5pm and that I'd been withholding his pills all day. Again, not mad, just convinced. The other day he thought I was giving him EXTRA to keep him doped up, and I'm not sure which accusation is worse...

He's been wide awake for all of these accusations and things. He makes others when he's half asleep, but these ones have all been while he was awake.

OH he was also convinced that a guy had been shot and killed in our back yard last night, but that one was easier to convince him it was a dream.

 On another note -- not more happy or more sad -- I lost my job. Okay, it IS happier. I hated that job so much and even though I have no idea how the bills are getting paid until my tax refund gets here, I am about 1000x more relaxed. Also, my house is cleaner. And my legs are shaved.

The change in Karl's mental state over the past week has been immense. It's been hard to watch and hard to deal with.
 He sees things that aren't here. Things are happening in his head that aren't happening for the rest of us and he can't separate what is in his head from reality. It's not constant, but it is frequent. Last night we'd just gotten him out of the shower and back into bed. He was wide awake. I was playing Rift with my friend Greg, in Texas. And Karl sat up and started complaining that he couldn't get into the game. He couldn't remember his password. I changed it, and he couldn't get in, and he wanted to play. He insisted that he was at his computer -- the computer I was at myself, ten feet away -- and that I had changed his information and was now lying to him.
 This morning, he was convinced that he was being given harmful pills by an old woman, that she was here and going to hurt him. When he realized he was home and safe, he cried because it's scary, to go in and out of reality. It's scary and confusing and exhausting.
 He forgets words. He forgets what things are, what things are for.
 These kinds of things are happening because, or so I've read, though the oxygen level in his blood shows that it's good when I check, his body isn't properly circulating it to his brain. Lack of oxygen to his brain makes him hallucinate.
 I can no logner leave him without another adult to stay with him. It's too muc responsibility for any of the kids and Karl sits up, tries to stand and doesn't know what's going on around him. Someone -- he or the kids -- could get hurt and I just can't risk that. I can't imagine how my kids would feel if he got hurt while they were watching.
 Olivia has come home early the last two days, claiming to have thrown up. There were no witnesses and she's acted perfectly healthy. I really think she's just stressed. I think she's afraid to be away from Karl. She's feeling insecure right now.
 Seth has had meltdowns every day for a week. He's losing sleep, he's feeling out of control. Overall he hasn't been to hard to deal with but I ache for him.
 Luke holds so much inside and I don't know how to draw him out. He knows more than the other two. Not because I've told him more, but because he's observant and far too smart for his own good; Seth is just as smart, really but a lot less mature, less able to see things outside of himself. Luke, though, quietly watches all of this happening and he's losing sleep, too. I go check on him at 12, 1,2 in the morning and he's laying in his bed in the dark, awake.
 I'm giving Karl his oxycodone around the clock now. Every three hours. I set alarms. It means I lose a lot of sleep, too, but even with this schedule he's still writhing in pain a good chunk of the time so I don't know whate else to do. It's not like I was sleeping much anyway. My mind is so full of things. How messy my house has gotten, how stressed my kids are, listening to the sounds of Karl moaning in pain all night, the lack of money, the worries about funeral costs and bill paying...
 I lost my job yesterday. I feel more relief than anything, to be honest. I know, that's crazy; I now have ONLY Karl's SSI income, and that will stop when he dies. So that should tell you how much I hated doing data entry, right? I was going to be productive today but I decided to just give myself a day. I'm not doing well at it. My mom came over to help me move a couple of heavy tables, a bookshelf and a saw out to the curb to offer for free. It was gone within 10 minutes. Mom and I watched, whispering cheers that it was all being taken. Woooo! I love to get rid of things. It's a favorite hobby of mine. I am constantly thinking, why do I have this? To goodwill with ye! Because I'm a dork like that. I've tried selling but no one wants to spend any money on anything. I did get $100 for the go cart a few weeks ago and another $124 for my yellow Kate Spade bag, but for the most part... stuff just isn't selling.
 I'm going to offer Karl's tools to my dad. He can have them ALL. Except one of each kind of screwdriver and a hammer. I don't know how or care to use ratchets or wrenches and whatnot anyway.
 I'm geting myself ready to get out of Arizona. I'm going to Texas. I'm looking forward to this huge change. It won't be for a few months after Karl passes, I don't want to change too much for the kids all at once. And I'll get their opinions, get them mentally prepared. I think they'll enjoy a change as much as I will. I think there will be people mad at me, but I'm past caring. The people who matter, understand. Suzy, Chris, my parents, Velia, Paige.

Friday afternoon, Karl had an x-ray done, because his leg has been hurting bad again, and he wanted to make sure everything is where it should be. From there, we went to a physical therapy appointment, which happens to be in the same office as his primary care doctor. So he was getting adjusted and the doctor called to give us the results from the x-ray. Since we were there, he came back to talk to us and give us the printout. According to radiology at the hospital, where the x-rays were taken, there was an opacity in the bone around the rid that was put in, in March, that could suggest an infection clinging to it. So we were sent to the ER to get an IV infusion of antibiotics. That never happened, because the ER doctor decided a second opinion was needed (because the radiologist form today had no idea about the cancer, he was basing his opinion on that lack of information), and he called the radiologist at the other hospital campus and together they compared the new x-rays with the old ones, and the new opacity is consistent with what the cancerous lesions that are already there look like. So the conclusion for the moment is that the cancer has simply spread further into the bone and is just eating through it. Now, to be absolutely sure the doctor ordered a test that we scheduled for Thursday, but it's probably the cancer rather than an infection.  To be honest, the cancer is the prefered problem here. Because infection means having to have the rod taken out, which means his bone will no longer have that support for one thing, and he will be bed ridden for months -- yes, months -- while they "sterilize" it and await the time to put a new rod in. And the first surgery was incredibly painful, and the recovery was hell.  Karl hasn't had chemo since January 10th and the decision at this time is that he's not getting it again. It's not something he can handle physically or emotionally, and I'm not sure me or the kids could, either. We're going to get set up on hospice this week and go from there. Focus on comfort and quality, because right now his quality of life is shit and all of the focus is on the amount of pain he's in; there isn't a moment anymore where he's not in pain.

 This is what I posted on facebook, but since then there have been more updates. Hospice is probably not going to happen because since we enrolled Karl on the long term care system, the two services are redundant and hospice is rarely approved. This doesn't mean much difference; he's still getting the same kind of end-of-life care.

 He wheezes almost all the time now, on or off oxygen, awake or not. He isn't awake all that much and he get disoriented easily. The other night, he was asking me if I'd caught "those snakes." and I was like, what snakes? and he said, "The ones that are overrunning the house!" /boggle

Spouses of Patients

 People keep telling me, "You're so strong!" and "I could never do it!"  Things along those lines. Sometimes just a sentence, sometimes a whole paragraph or speech. And I get that they're well-meaning, I get that they really mean it and I do appreciate the sentiment. But those of us in my position, the husbands and the wives and any other family caregiver... we're not what you think we are. We handle it the same way you would. We get out of bed, we do what needs to be done, and sometimes we hold it together but not always. We have good days and bad days.

  We're not saints and we're not martyrs. Sometimes we cope in selfish ways. We have tantrums and meltdowns and we say hurtful things. We do wrong.

 Sometimes we resent the sick person we love. Sometimes we stop loving them, whether for five minutes, a few days, or permanently.

 Sometimes we snap at them, and sometimes they snap back. We have our fights with them just like anyone else. Sometimes we are the instigators. We take things too personally or not personally enough.

 Some of us have affairs. We fall in love with other people. We plan for a future without the husband or wife, though they are still here.

 Maybe we stay because we love the dying person, maybe because we can't imagine being without them, even while we know that soon that time will come. Maybe we stay because we feel guilty for one reason or another. Maybe we stay because we know that everyone else we care about would hate us, if we were to leave. It could be any or all of these, and the reason can change from day to day.

 I don't speak for myself alone here; I have talked to others. I've heard their stories. We all react in our own way, but we've decided that however we react is normal. It's okay. But what it is not, is better or stronger or wiser or more caring than anyone else. You would do it, too, even if right now you think you couldn't.

And if you don't, choosing not to do it doesn't make you a terrible person. I would empathise with the woman who left her dying husband because I know how exactly what she's feeling. I feel it, too.