leatherman's log   April 2008 Week One |   Week Two |   Week Three |   Week Four |   Week Five

Week One: 4/1 Most days I've come home and written up the happenings from the morning. Unfortunately, while many of Jim's mornings haven't been too bad, the afternoons (and sometimes the nights) have been problematic. Any of the good tales I've had from my first trip of the day to the hospital have been overwhelmed by the setbacks during my second visit of the day. Through the events of yesterday afternoon and into this morning, I was actually very, very concerned that things were not going the right direction. Although the doctors have been assuring me that Jim's counts have all been getting better, I've actually been seeing that he's been steadily getting weaker and having more problems. My biggest concern over the last three days or so has been that Jim seems to be, for want of a better word, "unconscious" most of the time. When it's not from lack of sleep, tiredness, and feeling ill, it's from the pain meds. When he "comes to", it's for very, very short periods of time. For example, he zonks out while changing TV channels. Two days ago when he left it on the "catholic channel" (well, he is in a Catholic hospital LOL) for over an hr, I quit trying to watch any TV when I visit, and just read my book now (7th Heaven by James Patterson). It took over 45 mins to try to prompt him to order lunch today (he hadn't eaten any breakfast), and I finally gave up trying. When he is conscious, he is quite crabby. I explained that I understand he thought I was "pestering" him about ordering lunch; but he had been holding the phone, off the hook, in his hand for 15 mins without ordering. I debated this evening (after talking with the moms) on two courses of action now. One I implemented tonight (talking with Jim) and the other I'd rather not do for my own selfish reason (spend a night and day in the hospital to actually speak with ALL the doctors). When I returned this evening, Jim was actually much better! The oncologist was there and Jim was awake and alert. After the doctor left, I put plan one into action. I explained to Jim how worried I was about his states of "unconsciousness" and his out-of-character crabbiness. I told him that he needs to quit taking the Dilaudid and take the vicoden; he's got to sit in the chair more, especially for his meals; and he's got to try to stay awake more. He has got to try to fight through this, no matter how hard it is. After our talk, things continued to go well. Jim sat up in a chair for nearly an hour. He ate dinner and actually talked with me for a while. We watched some TV together (though he missed half of Idol, as they took him for an ultrasound to check for blood clots in his legs - and there aren't any!) Jim stayed awake for the 4 hrs I visited making me feel much better than I did earlier in the day. Before I left he told me that he would ask for a sleeping pill rather the pain med before he tries to get some sleep tonight. Though the past 24 hours had me very concerned and upset (after dousing my hands in the antiseptic, I rubbed my red, teary eyes yesterday and now one of my eyelids is slightly swollen and hurts), I feel much better after talking to Jim and then seeing him try so hard for me tonight. I'm still a little leery about bringing him home as I don't think I can care for him properly if he's going to be so unconscious so much of the time; but several of the doctors reassured me this evening that they though he would recover better (both physically AND mentally) if they got him out of the hospital and back into his own home. After a week of attempts to release Jim, maybe, just maybe, we'll get him out before Day #30 ends at 1pm. 4/2 I was up early this morning, and hoping this would finally be "the day". My right eyelid is just a little more puffy than it was last night. It's not affecting my vision, though it is annoying as heck. It still hurts a little bit so; but I'm trying hard to NOT rub it or mess with it. And no, moms, I don't think it's pink eye or a sty. I think my eye is just "mad" from all the crying and rubbing and that stupid antiseptic I wiped into it. LOL I had a similar thing happen a few months ago; but it only lasted a few days, so I didn't go for any medical treatment. If it gets worse or doesn't get better within a day or two, I'll have it checked out. (more about my eye in a moment) I talked with Jim before heading to the hospital and learned that after a cat scan within the next half hour (one last check for clots and a current pix of those tumors for the oncologist appt on Fri), they were planning to release him. I arrived a few minutes after they had taken Jim for the cat scan. I was hoping that after that was done, we'd wait a couple hrs to hear the results and then get the heck outta there. While I was waiting, who should be at the nursing station, but my ID doc again. LOL (I think I've overheard that someone else on the oncology floor a few doors down has HIV too) The first words out of his mouth were what did I do to my eye. I explained how I think I got antiseptic in it, and got a "free" consult from my doc as he took a look at it. He agrees that it just looks irritated and to apply some cold compresses (which I've already been doing ;) I'm typing this now with a compress over that eye, so you all look very far away. ROFL). He also told me that if it got worse to go to StatCare and make sure to call and let him know. Check out the lovely picture I attached to see how it looked this afternoon. My doc then told me that he had seen an xray that was done of Jim's chest a day ago and there was a little bit of fluid around his lungs. He didn't think it looked like too much of a problem (the ct scan would tell them more) and that the odds of a release seemed a good 95% today. When Jim was brought back to the room, we watched TV for a while before his lunch arrived. After lunch, Jim started getting groggy again. He was fumbling to hit the call button (for the nurse) and I asked him what he needed. He said he wanted to get the pain med so he could go to sleep for a while. I told him that 1) he should try to stay awake so he'd be ready when they released him and 2) that if he took the D-shot, they would NOT let him out today for sure. Jim was a good boy for me and, when the nurse arrived, he asked about the vicoden instead. When he asked about his release, the nurse informed us that the pulmonary doc said "no go" for today while they monitor this fluid problem. Needless to say, upon hearing that, Jim opted for the shot. I'm still worried about Jim's attitude; but it's still my "job" to help him "try", especially since he's incapacitated right now. Unlike two of moms, who's husbands don't do anything to try to improve their health problems, it's not quite time for me to give up and let Jim "do what he wants". So I spent the afternoon trying to arrange things so "if" Jim is released tomorrow in time, someone can be with him so I can try to make tomorrow's welfare appt. at 230. Luckily, if that doesn't work out, I've already got things arranged (since we have ended up with same case worker) to handle both of our cases at MY appt date on the 17th. That's just another bother through this crisis, as I have to keep re-scheduling all these appts. I'm not even going to call the cancer doc's office until Jim is actually back at home, since it seems all my worrying and planning is for naught. Ah, the logic of not pre-planning and just taking it one day at a time. When I got back home this afternoon, I found a note on our door. Thanks to google (what would I do without that and wikipedia??), I found out the letter was from the local Infectious Disease Health Team ("responsible for the follow up of certain Class A reportable diseases within a several county area" according to their website.) I guess that means Jim is about to add one more to the number of AIDS cases in the Ohio count. However, they don't need to "notify persons who have been identified as a contact to an infected individual" as, thank you; but I already know. LOL Although I do understand that Jim is in the right place if he's still having problems (rather than at home where I would be freaking out trying to handle the problems), I have to say how crestfallen I am that I didn't get to bring him home yet. They've been "teasing" us with the release for a week now, so I'm not setting my alarm early for tomorrow, as I have the last few days. If they do decide to let Jim out early tomorrow, they can just wait around on me for a change. LOL well, it's nearly 6pm, and the local mom has invited me over for dinner (pizza, I think). I talked to Jim about half an hour ago, and he was awake and doing ok. He had ordered dinner, and was watching TV. I think I'll going ahead and post this now and hope that'll prevent anything else "bad" from happening. (leatherman has spoken, so let it be ) Hopefully, I won't have any more to update you on until tomorrow - with whatever that news might be 4/3 It's now day 32, so we're officially starting the 2nd month of Jim being in the hospital. Heaven knows, I sure hope he's not still there by day 62!! Jim's blood work was a little low again today, so he got another transfusion. While still being on O2, his pulse/ox count was in the low 90s this morning; but dropped to 84 by lunch. I sure don't see Jim getting out by tomorrow (fri) and the hospital usually doesn't release too many people on the weekends, so I'm not expecting to get excited about Jim getting released until sometime after the start of next week. He's going to have to have a major turn-around this weekend or even that is too optimistic of a view. Although I had hoped to see the transfusion perk Jim up some, it didn't seem to have much effect at all - though hopefully his blood work will show some improvement by tomorrow. Instead Jim seemed to be worse off today. He was at best only semi-conscious part of the day, and he barely ate anything. I made him mad at me as I "nagged" at him to eat the cereal he ordered for dinner (it took an hour to get him to each 2 spoonfuls). I had gone back to the hospital early (I was barely home today between the hospital visits and the long appt. at welfare where I got my yearly re-eval done and most of Jim's case handled until we can start the procedures with Social Security) because of a disturbing call I received from Jim. Before his dinner arrived, I had to keep prodding him awake to get out what was troubling him. To be honest, I think he's about given up all hope. He says that he doesn't think he's going to survive this and that he doesn't know how much longer he can hold on. Four times (because he kept drifting off) I tried to explain to him that most of his blood work and bodily functions weren't that bad. I explained how I lay awake many nights thinking of what he was going through and what he chances were. I explained, through tears all four times, how I didn't want to lose him and that I wouldn't ask him to go through such "torture" unless I truly believed he could get through this. How much did he understand and how much sunk in? I just don't know. Before I left, I at least got a half-hearted promise that he would try to hang on a little longer. Tomorrow I'm putting plan 2a into effect. Rather than spend the night, I'm setting my alarm for very early in the morning. I have to get in contact with his GP and other doctors in the morning to get answers and their help. I need to know just how bad they think his condition is .If there is still a chance he can survive, then we need to do something to get Jim's mental state better or he's not going to be able to fight through this. If they really don't think he can survive, then I want to bring him home, and have better palliative care, so that his passing is easier and not in some cold hospital. And as for me, well, the emotional trauma of seeing Jim in this state is killing me. I almost dread going to the hospital each time, putting on a happy-face, trying to motivate him, and saying all those supportive things; while inside my heart is being ripped apart seeing him in such an altered, dazed, and sick condition. I just don't know how either one of us is going to have the strength to continue if things don't turn around soon. Somehow though I WILL hold on for as long as Jim needs me. I just hope that Jim can hold on for as long as I need him. 4/4 What a horrible morning; but a better afternoon. I got up (after hardly sleeping last night) and was at the hospital by 630am. I spoke with all of Jim's doctors and voiced my concerns. The docs explained that Jim's "altered state" was due to the pain meds and low O2. They all believed that his counts were stable enough and that going home would be the best thing for his continued recovery. So his discharge was finally scheduled for this afternoon. Unfortunately, a few hours later, it seemed like everything was going to hell in a hand basket. Jim had gotten up (with my assistance) to use the bedside commodore. Because they had not given him any pain meds, he was moaning and crying out quite a bit. He assured me that he was as okay as he could be right now. However, he didn't listen to me and didn't wait to get help back to bed. His legs gave out, and he went crashing to the floor. Luckily this was another "student nurse day" at the hospital, and several came to help me get Jim back into the bed and cleaned up. Of course, that incident sent me over the edge. While the nurses finished taking care of things, I ended up down the hall in the family waiting room, simply unable to quit crying. It seemed like my worst fears were coming true. Ah, thank God for the nurses, though. By the time Jim's nurse finally found me, she had taken steps to get things handled. She contacted the docs, who still believed that Jim should go home today. Dr Nagasaki (not his real name but something like that LOL) emphatically stated that he believes that Jim will survive this and that maybe a home health care worker might be sent to help out for a few days - but NOT hospice care. (I told the nurse that I understood about all about hospice care, as it was 13 yrs, 11 months, and 2 weeks ago that I brought Randy home from the hospital and had hospice care for 9 days before he passed away) So the nurse had already begun to made arrangements to get us some help. A hospital bed is being delivered this afternoon to our house (good! didn't I think that would happen and half-planned on it already? ;) ), along with O2. An ambulance will be bringing Jim home and helping to get him inside the house. And I also believe that they are arranging for some home health care worker to come over this weekend (not certain on all the details as my head is still spinning!) I made some calls and have a friend coming over within the hour to help me move a couch out of the living room to make space for the hospital bed. Meanwhile at the hospital, they are giving Jim one last IV that should take a couple of hrs, while all the other arrangements get put together. ----------------------- well it's 4:00pm. the sofa is in the garage, the hospital bed and O2 machine are in the house. The ambulance has come and gone. And Jim is home! What an absolutely exhausting day. I'm both terribly scared and incredibly happy. Whee! the rollercoaster has been zooming along today. My back is starting to ache and I am dead-tired; but Jim is doing fairly well, and that's all that matters today. Tomorrow a nurse is supposed to stop by; and we have no appts. until Tues. The dogz barked at Jim at first. As you can tell from the pictures of his first day in the hospital and his first day back home, he doesn't look much like they remember Jim. Nor does he smell too much like Jim with all that hospital odor around him. However, within about five minutes, he was letting them jump onto the bed with him, and tails were just a-wagging. Hopefully, this is finally the turn-around point and things will actually begin to improve. Thank you for all your support for me while Jim was in the hospital! If things go well this weekend, I'll give us all a break from these updates and catch you back up at the first of next week. 4/5 Jim's first night back home didn't go too badly. Luckily our living room is big enough to accommodate our new sleeping arrangements. I had Jim all tucked into his bed and was able to pull out the sofa bed for myself, still leaving room to walk around and put a bedside table next to Jim. However, Jim had other ideas. He began to cry as he told me how he had only managed to get through by hoping for the day when we would sleep in the same bed together again. Since I have no clue what the future holds, and since Jim had been through hell the last 8 weeks, who was I to deny him what he so desperately needed? Thankfully, moving him from one bed to the other went smoothly, especially with Jim really motivated to make the effort. You'd think after such a grueling day yesterday, he would have been all tuckered out; but I wasn't so lucky. LOL He talked and cried until midnight, explaining what a horror the past 33 days and 2 hrs had been. The hours of loneliness, the sterility of human contact with the nurses being gloved and masked, the confusion of not only different nurses and doctor every day; but the daze and mental confusion caused by the meds, much less the simple sheer terror with the possibility of death so nearby. The rest of the night was spent with Jim still living on hospital time. That meant that every hour and a half to two hours, I was awakened as he needed more pain meds, more water, more or less linens, or the urinal. And each time, he wanted to talk more. I don't think I even got 4 hrs of sleep last night and it sure wasn't 4 hrs of sleep uninterrupted. Hopefully, as Jim re-adjusts to being home, things will settle down in the next couple of days. Thankfully, even with the welfare and SS pending, we've been able to get some assistance. A nurse was by today, and another will be in on Mon - along with a home health aide, which will take some of the pressure off of me. 4/6 Just when I thought I would be updating you less as Jim struggled to recover, I find my writing another post as Jim has worsened. It seems like every time I'm expecting the situation to turn around and start improving, we take a step or two backwards. Last night was similar to his first night back ("living on hospital time" and sleeping together on the fold-out, of which I only have about 5 inches of space last night), except I got an extra hour of sleep throughout the night. Today, as we passed the 48 hour mark, I must say that I wish they had NOT released Jim from the hospital. I have spent much of Sunday snapping, cajoling, pressuring, pleading, yelling, crying and bitching at my honey. He doesn't want to eat, or move, or do anything to try to stay alive. Matter of fact, he's ready to go back to the hospital. I don't really know what he expects there as they never made him eat or even got him out of the bed the last three days he was there. I guess those nurses were just happy to keep him Dilaudid-ed up as he was then one less patient to actually care for. I screamed at him and cursed at him this evening and told him how much I was doing to try to keep him alive, while he was doing absolutely nothing to help himself. (Maybe those low O2 levels affected his brain/mind) I told him that I would NOT take him back to the hospital today. Instead, I told him to decide if he wanted to live or die, so I knew what to tell the visiting nurse tomorrow and which doctors to call. He also needs to decide, if he chooses to finally give up, whether he wants to die in the hospital or at home. I just cannot believe how ugly I had to be to him to try to get the point across, that's not the kind of man I am. I nearly got in the car and drove away this evening after yelling and crying at him again; but I am a better man than that. I told him that I'll never regret what I said to him today whether he lives or dies, because I know what I said was nothing but the truth, backed by love. As much as I wanted Jim back home, I now wish he had never come home this weekend (moral to this story: be careful what you wish for). Looking back and re-reading my previous posts, I must say that these last three days have actually been the worst for me so far in this whole crisis. I'm so mad, so sad, so frustrated, so sleep deprived and so tired and exhausted that I can hardly bear it. As my mother told me the other day, there's only so much YOU can do to help someone if they won't help themselves. I guess I'm trying to talk myself into accepting the fact that I'm not going to be able to prevent Jim's death, since he obviously has no will to live. I plan to tell the nurse tomorrow all about this weekend, right in front of Jim, and will call the docs in his presence also (I have been "discreet" a few times and talked to people - like all of you reading through these last terrible 36+ days - outside of Jim's presence about his condition). But it won't be MY decision to let him die; it will have to be HIS.

Week Two: 4/7 am I was so glad this morning to receive a call from the visiting nurse. She wanted to come over a little earlier today than originally planned. After telling her about the events that transpired over the weekend, and seeing Jim firsthand, she phoned the doctors and had an ambulance sent out to take Jim back to the hospital. I'll be heading to the hospital in a few hours (after they take Jim in through ER) once they get him settled into a room. I'll update you all later tonight. 4/7 pm This must be the world's longest rollercoaster that I've been riding the last 36+ days. I know I probably keep saying this; but today was the worst day yet. After things went so smoothly with the help of the visiting nurse for transporting Jim back to the hospital, things were terrible once he got to the hospital. Since we hadn't been able to contact his GP at first this morning by the time the ambulance arrived, Jim wasn't pre-admitted to the hospital but went in through ER. The nurse had discussed with me that it would take a few hours admitting him that way, so I should take some time (and go eat some homemade chicken noodle soup my Ohio mom had made for us) before going to the hospital and that by then he would be back in a room rather than ER. However, when I arrived around 4pm, I found Jim still in ER - tucked away in a darkened corner behind a curtain of one of the ER rooms. After seeing no medical personnel for 45 mins, I went looking for answers. The ER nurse was first very guarded about saying anything to me until I whipped out the medical power of attorney so fast I nearly got a paper cut. However, the most I really got out of her was that Jim was "very ill". Well, no duh! That wasn't new news after spending 33 days with him in the hospital. Nearly 8 hrs after entering ER, Jim was finally moved to floor two (the surgerical recovery floor). Because Jim had gone home, his records had already gone to the medical records dpt, so no one had any idea about what his condition was. A rather pissy nurse and I played 20 questions as I filled her in on the details, and offered to go get his records myself, since it was taking so long to get them transferred back up to the floor. Then I found out that although Jim's GP had been notified about all this at 10am, there were no orders for Jim, so they weren't even giving him water. For Christ's sake! The guy obviously is on the edge of death and can't even get a cup of cold water in a hospital! I drove back home (detouring for stuffed bell peppers for dinner thanks to the local mom) to get some of the more recent papers about Jim that I hadn't had time to include in my ever-growing folder, hoping to help the new nurses figure out who Jim was. While at home, I gathered back up all the toiletry supplies we had brought home from the hospital, along with several cups and bendy straws. If they weren't going to provide some basic necessities and care for Jim, then I would handle it myself. I got back just in time to find Jim being transferred (once again) this time to floor 10 - a medical floor that looks to be a step-up from oncology and a step-down from CCU. But this was a good transfer! On the new floor two nurses and three aides quickly were attending to Jim's immediate needs (and actually had a partial copy of some of his records). I told them all about the last month, the horrible time in ER, and thanked them profusely as I was feeling better about the situation finally seeing someone actually caring for Jim after nothing was done for nearly 10 hours. The most troubling events of the day were a few things that Jim said to me. When I first arrived in ER (in that cold dark corner of a room) he didn't know who I was and asked if I was there to sell him something. Later as they were transferring out of ER, he told the aide I was his business manager. Thankfully out of ER, he knew who I was again. But as I left to go home for dinner, paperwork and his personal belonging, he asked me to take him home too; he didn't remember being at home this weekend. Then before I left him tonight, he was quite frustrated and mad at me. He repeatedly asked why I was forcing him to stay there and what gave me the right to make decisions about his care. Though not knowing who I was, was the most devastating blow; I can forgive his anger at me, as he has very few lucid moments right now. The Jim that I know isn't home right now and a new, very disturbed person has taken his place. The nurses talk to me like I should know that he's dying, while the doctors keep telling me he could pull through. If I knew which way things were going, I could make a better decision and the troubles of this weekend might not have happened. I'm very mad at some of the doctors and plan on talking with them. Just not tomorrow morning, as I have to get some rest after only getting about 15 hrs of sleep through the last four days. I hope and pray that Jim makes it through the night. - - - - - - - - - - - - - - PS it's midnight and I'm about to finally crash, when my phone rang with a call from Jim. The time he spoke about how he's dying and asked if I would come back. I tried to explain that he was getting good care and I had to get some sleep. His reply? "You've betrayed me, and left me here to die. Goodbye. click". I really don't like this person that has replaced Jim, so I'm just going to ignore his hateful words. I know what I've done has been right, and so do a myriad of nurses, doctors, and all our friends. I hope and pray that Jim makes it through the night and that "Jim" finally comes back to me. 4/8am I hope not to jinx things, and I say this with reservations; but things seem to be a little better with Jim today. After that midnight call from the "person who isn't Jim", my phone was ringing again at 630 this morning. This time it really was Jim on the other end (he called me "honey"). He wanted to know if I could come in and turn off the beeping IV machine. (why the ER put that long-ass IV needle in his arm rather than use his port is a mystery I'll never know the answer to) I told him to call the nurse; but he said he had already done that several times. (Jim seems to be very hard to get a pulse/ox on, and IVs, for some reason, tend to beep alot when they're run through a needle in his veins) When I told him to try straightening out his arm, the beeping stopped. I got a very heart-felt thank you from Jim and told him that I'd be seeing him soon. Two hours later (since I was awakened so early, I was about ready to leave the house.), Jim called back and asked when I was coming to see him. He was very happy to hear that I would be there by 830. I was VERY happy to see upon my arrival that he had eaten all but 2 spoonfuls from a bowl of frosted flakes, and was again drinking the ensure. I was even more pleased to see nurses and aides frequently stopping by to check in on him. (I have made sure to thank them all, hopefully, that'll help keep the better care coming) Not long after breakfast, Jim was scheduled to get another transfusion. As the nurse was about to move the IV to his other arm (hopefully to get that beeping to stop), I asked why no one was using the port. Duh! I guess all his records aren't back upstairs yet. Before long, the IV needle was out, the outer part of the port was inserted, and fresh blood was flowing into him - with no beeping. This hospital runs their food service like room service, so you can call whenever you want to order. They called while I was there to tell Jim more ensure was being sent up (I took the call). When the worker told me that Jim was listed as "non-parcipatory", I agreed with that. Now a food tray is sent to him automatically along with ensure for each meal. I stayed through his lunch and kept prodding him (he's still very "dozy") and got him to eat all the meat and a few noodles from the beef tips and noodles (it didn't really look like that; but that's what the ticket said it was LOL) and half a roll. He was back to being my nice Jim and took my prodding without bitching. Before leaving for the afternoon, I promised him that I would be back at dinner to make sure he actually ate again. While at the hospital, I also started my own crusade. EVERY single doctor, nurse, aide, etc that steps into Jim's room has to hear my tale of this past week. I believe that because of the hospital's room service food system, where the cafeteria also picks up the trays, that no one was actually tracking how little he had been eating. I even remember an incident last week when the worker picked up Jim's dinner tray (untouched) and joked about Jim not being too hungry or not liking the food that night. What really happened is that the nurses on the oncology floor had been keeping Jim so doped up (sometimes I witnessed them giving the Dilaudid injection just as a meal arrived) that he was starving to death under their "care" (and I use that word VERY loosely). That meant by the time he had come home to me, he didn't have any strength to even attempt eating, much less trying to "recover". And for good measure I also add the part about ER leaving him alone all those hours to die in that dark corner of a room. We're still not out of the woods by a long shot; but Jim seems to be getting back to where he was about mid-week of last week - before he began to starve to death. I plan to change my visiting hours, so I can be there each meal (well, maybe not in time for breakfast LOL) to make sure that Jim keeps eating. One last thing before I got park my butt on the couch and do NOTHING for a few hours. I saw a sign today that the chemo must still be doing it's thing in Jim's body. After helping him brush his teeth, I was helping an aide get Jim washed up and I noticed quite a bit of hair on his pillow and the linens. Thinking the good thoughts, I'm going to pack a ball cap to take with me today, so maybe soon, Jim will be like like some of those other chemo patients I saw - walking the hallways with their IV stands and with caps on to cover their bald heads. Though MY head might not be going bald (no jokes from the peanut gallery!), my head feels a little better this afternoon. PS I really am going to sit on the couch now; cause I had a few "chores" to take care of first on such a beautiful Spring day in Ohio. First, I had to clear up the "dog yard". Now that all the snow is gone, all that un-frozen poop from this Winter needs to be cleaned up. Of course, I had to take some time and take the dogz out into the "big backyard" (behind the pool) to play, roll in the grass and chase balls for a while. Finally, I took some time for myself, took off my shirt, and just sat up on the deck by the still-covered pool, soaking up some rays. The dream I've been holding to through all of this is that "some time" this summer, Jim and I will both be sitting up by the pool enjoying the Summer together. 4/8 pm I continued on my tirade this afternoon, as Jim was once again not doing well. When I returned, I found the nurse bringing in a reheated tray of food for Jim - who was still lying there pretty much unconscious. Jim and I fought again about eating vs. dying and I did get him to eat 1/2 a chicken breast. One of the cancer doctors came in, and I let loose the tirade against him. Looking back now, I will have to say something nice to him and one of the nurses, as their answers have begun to sink in. Don't get me wrong, I said the right things, and I had the right to be upset; but after stopping by my Ohio mom's house and breaking down (more about that later), and listening to her story, I think I'm finding some hope to still get through all of this. Traumatic as this has been with Jim, this isn't all that "special" as there are probably thousands of other families going through the same thing today. After Randy was buried, I never looked at a funeral, with just a passing glance as I used to. Now, I always feel sympathy as I know someone there by that grave is as hurt and destroyed as I had been at Randy's funeral. My heart goes out to those people, whom I don't even know, sooo much. But maybe that's my problem. The other day, in one of his deliriums, Jim said I was acting like a "big girl". What can I say, that is who I am - a very sentimental, emotional guy (omigod! that must be "mikie" talking and not "leatherman"). But I don't apologize for being that way. I lost the love of my life when I was only 30 and I nearly died twice. I learned the hard way to appreciate life and the ones you love. You have to enjoy your life and appreciate your friends while you are alive; because none of us really knows what happens after that. If you blow it in this life and go around sulking, you just might have wasted it all. So talking with the Ohio mom, I remembered what we went through when her husband was so gravely ill and nearly died. She begged him to eat and live; she argued about his care with the doctors and nurses; she lived day to day never knowing if she was about to become a widow or not. Even after over a month in one hospital and then being sent to a rehab hospital to recover (or, being brutally realistic and honestly, being sent there to pass away) for two more months, her husband pulled through and has been alive (though a diminished man now) for 5 years - and he had NO will to live. We (as I was by her side throughout that time in her life) received four phone calls throughout his first month in the hospital, hooked up to sooo many machines, to come quickly as he was dying. No one has called me to say that about Jim. Matter of fact, the cancer doctor did speak about starting an appetite inducer medication along with IV nutrients. I may have been a "big girl" today, crying and ranting, but I know that if they continue to used the Dilaudid and expect Jim to eat, that he will die. I had my medical POA out again today and put a stop to that, and I truly believe that is the correct solution to this current setback (see I have some hope now, I'm calling it a "setback"). Of course, Jim's situation is still dire and there may not be a recovery; Either way, it obviously means that this is a hard fight if it's going to won. (the cancer doctor also explained how much harder Jim's condition is to fight having AIDS and aids-related non-hodgkins lymphoma; but having treated several similar cases, he really did not feel it was time to give up yet) Several times during his lucid and delirious moments, Jim has said that he wanted to live, so tomorrow it's time for me to keep fighting for Jim as another strategy (the med and nutrients) is tried. I may have been emotional today; but I was still doing right. Finally! I bet you thought I forget to tell you more about my break down tonight. You know me, my stories always come back around - eventually. LOL I guess what's troubling me the most personally (besides perhaps losing Jim) is that we keep being on this brink and I'm deadly afraid some day some one is going to force me to make "that" decision again. With Randy, and with every one of our 7 spaniels that have passed away since, I was the one called on to make that final decision. I know I've made the right choice (too!) many times now, but who I am to play God? Each choice has always a very somber and heavy burden for me to bear. I tell you, being a "good guy doing the right thing" is a hard responsibility. I believe now that after the last few days, tonight I stumbled under the load I'm carrying - but I'm still throwing punches! (I know I mixed my metaphors but I'm upset and emotionally wrung out. That's my excuse and I stand by it) Tomorrow I'll be back, with either Jim or JimD (that "other" person he is sometimes), making sure he's eating (as I did tonight as I feed him myself, and constantly prodded him to wake up and finish chewing and take "just 1 more bite") or getting nutrients. With some luck (backed by your prayers and good thoughts), and some patience on my part (patience - a hard lesson to learned and boy have we been taught it through this situation!) hopefully for Jim's sake, things will finally begin to turn-around. ---------- It's midnight and I just returned from the hospital after a late night call from Jim (the real Jim, not that guy that called me last night). After talking to his nurse, we thought it would be best if I came in after hours to help calm him some. Just 1/3 through a bag of IV nutrients the change in Jim was very good to see. He had a million questions, like a man coming out of a dream. He even asked if he had been someone else lately. I told him that I called that guy JumD. His reply? "That guy isn't very nice is he?" No. That guy is a really bastard. Jim did remember being at home, but was fuzzy on what happened through this last day. I explained how I had fought to get him the proper care, how the doctors and nurses had listened, and that I thought we were already seeing a turn-around evidenced by how lucid he was. I filled him in on his treatments and what to expect tomorrow. I thought it was best to NOT tell him about the ER experience. Hopefully, he won't ever remember that at all, though it will be forever etched in my mind. We made a plan of when I would come back tomorrow morning and wrote it down. He then told me to go home and sleep, so I could hurry up and come back. On the way out I had another nice chat with his nurse (I still believe that the more people that understand the whole situation, the better care Jim will receive). Nitey nite as I have to hit the hay, since I am "scheduled" for a 930 visit with my honey and I have to be ready to fight the good fight again. 4/10 I didn't post yesterday because I was just too confused about what to do to help Jim and was emotionally distraught and wrung-out. For the first part of the day, Jim was doing okay; but as the day wore on, he became disorientated and confused again. He even refused to let the nurse re-attach the TPN (iv nutrients) after the blood transfusion was done. I went back in the evening, and Jim was semi-lucid and demanding to go home - regardless of what that meant. So we had a serious talk. I explained to him that in his lucid times, he stated he wanted to try treatment and try to stay alive. I explained that if he really did feel differently, then he had to tell that directly to the doctors. So this morning I was back up early and in to talk with the doctors. ALL of the doctors believe that he can pull through - maybe of fact, after finding on the latest cat scan that the tumors have grown slightly larger, a second full round of chemo is being scheduled in a few days because his numbers are all close enough to normal. Also arrangements are being made to send Jim to a rehab facility, in a few days after chemo, for perhaps 2-3 weeks to recover before coming home. I had a long talk this morning with Jim's GP about" Jim", "unconscious Jim", "depressed Jim", and "JimD". She says that sometimes cancer patients go through this kind of situation because of the meds, their illness, and just being in a hospital for so long. She had a psychiatrist come in and speak with Jim, and then with me. The plan now is to give Jim a mood elevator that should begin to take effect within a day and also anti-depressants to continue to help this situation. It's no wonder the poor guy has been so confused through all this. Tonight they moved him again! and back to floor 8 (oncology - where they let him starve!!). However, he's back on the other end of the floor, where I thought the nurses were much nicer and better. Just before I left, as we could see a spectacular Spring sunset through the windows, he asked (and he has such a tough time talking now) whether that was the room and bed he was going to be staying in for the night. (poor guy! never the same nurses, or doctors, or rooms or even beds.) Tonight was student nurse night, so as I was leaving (early for a change) a "horde" was descending on him to give him meds, change the iv fluids, wash him up, and get him what he needed to get through the night. Hopefully, a new sleeping med will help out too. (I warned him about those 1am and 3am calls LOL) Although I would have liked to have seen some improvement in Jim tonight, at least he was just "confused Jim" and not one of those other bad personalities. I can't tell you at all that Jim is doing much better; but I can tell you that his condition has been stable, and things are being done to correct the problems he is having. After several days of bouncing up and down, I'm completely crazed and worn-out. I was all ready to accept the inevitable this morning; but none of the doctors believe the situation is that drastic (as I said the cancer doc believes chemo is a viable treatment in two more days). After talking things over last night with my mom-in-law (a nurse) to determine what I needed to say to the doctors this morning and what I needed to find out from them, and after talking to my local mom today (who echoed what my own mom has said in the last few times), I've decided to take a different approach to Jim. Until his personality is back to normal, I can't let him keep cracking the emotional whip over me, and go rushing to the hospital every time he's upset. I feel bad about having to take this tactic, but I have to save my own sanity (and health) and get some sleep (nearly every 3 hours for the last 5 days, I've either been doing something for Jim, or answering one of his crazed phone calls). I still feel deeply obligated though to keep a very close eye on the situation though - they did almost let Jim starve to death, so I can't completely trust them at the hospital. Oh, and in two weeks, we'll find out how much of a toll this has taken on my health. On the way in tonight, to make sure Jim ate something at dinner time (about 10 small forks of pasta with meat sauce. that amount was better than nothing, and he does have iv nutrients still going), I stopped by the lab and had my own blood work done. Hopefully my counts won't be too far in the tank (I did "try" to take my meds, but I'll admit I wasn't very good at doing that for a lot of this past month). I hope the doc won't razz me too much either; but, with some luck, if Jim really is in rehab two weeks from now, I bet the doc will give me some grief. LOL 4/11 After realizing I had just "lost" a week out of MY life, my brain is running full gear. I had to jot down a slew of thoughts to make some sense of what to tell you. So, sorry for all the (parentheses) LOL update on Jim Technically, Jim's condition is better than just stable (not in the medical sense, but as in how I perceive his condition), as several doctors reported more of Jim's internal organ functions returning to normal. I can't see much change from yesterday, except he was more asleep today, rather than unconscious or semi-conscious. Thankfully, I think he's finally getting some real rest. When he is awake, he's having a much harder time talking right now (dry mouth problem) and still having a little bit of confusion. (they moved him to yet another bed!! It's in the same room thank goodness; but they moved him to the other bed in the room which has an air mattress, to help prevent bed sores from forming) He had at first told the nurse he was going home today, and then told me that "I" was getting chemo today. ( Not! After living through these last 40 days, YIKES I think I'll pass on ever taking chemo!) I helped the nurse wash and change him this morning, talked a little bit, and ordered his breakfast (which he didn't eat because of falling asleep) before leaving. He called me around 1 to just chat. He was able to tell me he was still waiting for the chemo treatment. He didn't beg me to come in though; instead he asked if I was going to be coming by at supper-time. a harder experience? I'm really going to have to go re-read some of  posts from people at aidmeds.com that have gone through a similar situation.. Since I've only experienced a similar, yet different situation, and having listened to my Ohio mom's advice and really tried to remember her situation, I'm finding I need to look toward their stories and advice on how to proceed down this hard road. Randy only had a 9-day hospital stay and just very weak until the last month of his life. Afterwards, I (at 30) was shocked and comforted to be able to share the kind of experiences I had then with my grandmother (80 at that time. I have always thought of this kind of thing as another bit of fallout from having aids. I am as sick as and can relate to people's conditions who are much older than I am. Maybe I should go read around in some senior's sites to really get a perspective on the life I've lived from 35-45. LOL but back to my grandmother...) who had around the same time lost her husband to Alzheimer's. For both of our men, they faded away (Randy in 18 months, my grandfather over 4 or 5 yrs), and the end was expected. Right now I have more in common with my Ohio mom (67 - at least I'm finally relating to someone a little closer to my own age of 46 LOL) as her husband had a life-threatening crisis for 3 months. This experience is vastly different from my previous experience with Randy. Having lived through losing one partner, I really do know that life goes on. And that's part of the problem right now. Life is still going on - and I've got to get some of my life going again. I have to reconcile myself to NOT being by Jim's side constantly. In "losing" this last week, I put off earning some $$$ (more webcam work for a previous boss. It won't be all that much ($300 maybe) but it'll sure pay for some of that $3.45 a gal gas I'm burning up going to the hospital. Plus I do need to keep the roof over our heads for when Jim does get home), the house is getting all cluttered again, I didn't get any paperwork completed, and (selfish though it is) I didn't get outside to do any Spring yard work yet. So today, I'm trying to make some changes. I started the day by taking my morning meds, visited Jim from 9-11, talked to him at 1, and called up the medical supply place to pick up the bed, and 02 condenser tomorrow. (I'm trying to think positively, that "when" Jim returns after rehab in several more weeks, we won't need those items) I won't return to the hospital until 5. Dinner is 7-730 tonight at my Ohio mom's house (where I'll take my nightly meds). If you know me at all by now, you know I'll still be worrying about it all. I can't help it. As I've discussed with people before, even with all the crises and deaths that have been in my life, I'm not a pessimist. Most of my thoughts are about how things will go WHEN they work out, even if that takes longer than I'd like - a truly optimistic view. However, as a realistic person , I know that sometimes things don't work out nicely (my heart has already been broken learning the lesson with Randy). In many ways Jim's crisis has been a much harder situation to get through than Randy's. I just keep telling myself that the chances are high of the outcome being better this time. Unfortunately, death trumps everything, and losing Randy truly was the worst thing to happen in my life. The doctors tell me that Jim shouldn't die, and I'll just have to trust their word. Ohio is experiencing Spring finally. The daffodil is out, and the irises are sprouting by the pool. However, our last late (and hopefully final) snow is predicted for this weekend. I'm sure it won't be anything too bad, it's just coming a week earlier than normal. During one of the snows, I couldn't get the patio dog to open into the "dog yard". I tried to kick the foot board of the door to push it open against the snow, but instead poked a hole in the screen that day. Just last week, Joxer shoved his nose through, and then followed with the rest of his body. Aries has learned the "trick too. Only my good boy Zeus stays outside till I open the door. I can't find a piece of lattice I could have sworn I had, so I used an old shingle as a temporary stop-gap measure. I used the staple gun to attach it to the door. Joxer learned to paw it off and I had doggies in the garage again. Today I dug up some nails and really attached it. Ha! Humans are smarter than dogs. Having the opposable thumb may have may me smarter; but it also gave me something to get hurt. LOL I whacked my thumb good and ended up with a very painful blood blister - but no dogs are in the garage anymore. 4/12 My phone ringing (w/ Jim's ringtone, a Pet Shop Boy tune) at 7:15 woke me up this morning. I was surprised that Jim would be calling. To be honest, when I left the hospital last night, things hadn't looked very good. I know the doctors kept telling me that he was getting better; but as he laid there sleeping when I left last night, so ill that he had barely been able to talk to me, he looked worse that death warmed-over. To my eye, he looked like and reminded me of nothing more than Randy during his final few days. Expecting him to still be in a "stable" condition, and to hear his mumbled voice, imagine my astonishment when I heard how clearly he was speaking. The more he spoke, the faster I woke up, as I realized something wonderful had happened. When he asked when I would be in to see him (I had already jumped out of the bed by then), and I said probably not until 930, he told me to "get my ass outta bed" and come see him soon because he felt much better. Before an hour had gone by, I was entering his room. Tears threatened to flow, as I saw him not only sitting up in bed; but happily chatting with his nurses. The change in Jim was remarkable! It's no exaggeration to say that he is 1000% better than he had been just 12 hrs. previously. (Don't get me wrong. I totally understand that we're not out of the woods by a long stretch yet; but I needed something to pin my hopes on. I needed to see some visible improvement in his condition.) I really got to "visit" with Jim throughout the morning, watching him eat not only some breakfast; but some lunch too (I had a third of his chicken pot pie, he had the other third; we had both had enough and left the last third LOL). During that time we talked about the things that had actually been happening vs the things Jim had perceived through most of the last week. Much of Jim's "reality" was mixed up between overheard conservations going on in the hospital, and with whatever was playing on the TVs loud enough for him to hear, along with the true reality of what had been happening to him (the multiple rooms changes, so many different nurses, and doctors coming in at all hours) His confusion (and the underlying depression) are getting better as times goes by. Late this afternoon, I took "our" Ohio mom along to the hospital with me (she "bribed" me by offering reuben sandwiches at her house afterwards LOL). Jim was still up and doing well, so we stayed nearly an hour chatting and watching the ten-billionth re-run of The Lord of the Rings (which one doesn't matter. I can quote them all. LOL) Dinner for Jim was all the meat in the beef tips and noodles (and that's what it really looked like this time LOL) and some popsicles. After the reubens and only one hand of euchre (and for a while I felt the old mikie again - mainly because I won! LOL), I made one last run by the hospital about 830. Earlier Jim had been hinting about asking me to stay the night, but he was just too sleepy already (and crabby from being tired), and I wanted to get home so I could spend just one night NOT worrying so damn much. My whole day has been so much brighter (even if it did rain off and on all day). Who would think that just having your partner not all talk "crazy talk", much less just be able to talk at all, would be such a great thing. Hmm, next time you wish your partner would just shut up, you better consider the ramifications before making that wish. ROFL ---------------- well, I guess I let my spirits get too high, and now I guess I'm going back to my original game plan. Last night after leaving the hospital, I was surprised to receive two phone calls from Jim. It seems he had been talking to the aide about Pooltag and had some new ideas. I was very buoyed to hear that - that means he actually contemplating living until that pool party we hold on his bday at the end of July. However, during the middle of the night, I received four phone calls from "crazy Jim". He was fairly mellow and subdued but wondered what was happening next, where were he clothes so he could go home, when was I coming to visit, and then tried to tell me the doctor said this morning that he would probably be released to go home on Monday. Needless to say, I didn't get the good night's sleep worrying less about Jim last night after all.

Week Three: 4/13 I was only at the hospital a short time this morning because things weren't too bad (even after those late night calls). Jim's nurse and I discussed what was happening and she gave me a new term to google up : "hospital psychosis" (cognitive problems developing from a hospital stay). Now more of what's happening makes sense - and causes me less worry too. Understanding that term and remembering what my mom-in-law told me the other day about hospitals having to do more paperwork on a patient who has been in for over 30 days, I now understand why they sent Jim home last weekend. They were hoping to help, not only themselves to less federal regs and paperwork, but to also help Jim's mental state. Thankfully this psychosis is a temporary condition said to clear up within two weeks of returning home to familiar sights and routines - and without all the lights, and bells and whistles going on in a hospital. I'm going to finally bake some muffins today for the nurses (I'll finally get to use the new muffin pans I got for my bday, ages and ages ago it seems), and tonight I'm putting his phone on the charger before I leave. (the outlet is on the far wall, so I know he won't be able to get to it in the middle of the night. leatherman snickers evilly LOL) I NEED some sleep and I have a couple of days of work that I can do this week, and we sure do need a cash infusion. 4/14 Ack! The phone-trick almost worked. Someone slipped up in the middle of the night though and my phone was ringing at 4, then 530, then 6. I've since talked to the nurses and now there's a note in Jim's chart to tell him that his phone "isn't charged up and is still charging" if he asks for it again in the middle of the night. I re-scheduled his SS appt. (again), put in a couple hrs of work myself (where Jim used to work too, so most of my time was spent catching everyone up instead of working on their webcams LOL), scheduled pickup of the hospital bed and O2 condenser for in the morning, and made short visits to the hospital at breakfast and lunch. I'll make one more short visit today but that'll be later tonight (so I can put his phone on the charger again), and with a little luck (and help from the nurses) get to sleep in a bit since I'll need to be home in the am for that pickup. Jim was still doing alright. Although he's been shedding quite a bit (chemo will do that), you won't know it as long as you didn't check his hairbrush or pillow case. As for myself, I could use some more sleep (maybe, just maybe, tonight!); but have been doing fairly well. I've been eating right for a while and my stress-induced intestinal problems seem to have cleared up. I've also been a VERY good boy, and have taken ALL of my meds since the day of my last blood work. If I can keep that up, then maybe the doc won't fuss at me too much next Thursday when I see him, not at the hospital for a change; but in his office. ---------- I'm not so certain if I'm going to get that good night's rest or not. When I stopped back by the hospital tonight, things were not going so well. Jim was totally misunderstanding about physical therapy and rehab and is under a firm belief that if I only bring the walker back to the hospital he'll be able to get out of the hospital. I tried to make things better by bringing back some of his own clothes, the slew of get-well cards he has received, along with a list of things he can do to get out sooner (eat as much as possible, do the bed exercises, sit up in bed, sit in the chair, etc); but I don't think it helped too much. Jim was in quite a mood. First he couldn't get past some of his confusion and was very frustrated. Then started on the tack that "I" couldn't even do one thing right for him (I didn't bring the walker in - personally, I was afraid that in his "condition" he might try to use it in the middle of the night!). Unfortunately, I let my own frustrations (and lack of sleep) get the best of me, and told him in no uncertain terms to NEVER fault me after all that I had done for him over the last two months. (I'll be SOOOO happy to get the real Jim back!) Secondly the hospital has gotten quite full in the last few days, and a patient was moved into the other bed in Jim's room tonight (a 92 yr old man). Jim's paranoia meter was shooting off the scale tonight! He was back to being close-eyed, teeth-clenched, and begging to be taken home. I did hide his phone in the bedside stand and talked with his nurse; but relented and told her she could call if Jim got "out of hand" during the night. (God, please let the sleeping pill work really good tonight!) 4/15 Yeah! I got a whole un-interrupted night of sleep. And thank goodness because today was a busy one for me. Jim's cell phone was still off this morning and went to voicemail, and no one was answering the hospital bedside phone. After the guys came and picked up the medical equipment from the house, and I got to the hospital, I found out why. They had moved Jim again! Because Jim had gotten that new "roommate" last night, his paranoia had kicked into high gear, and the nurses told me he had regressed to that nearly catatonic state again. Around 2am, they transferred him to the 5th floor (pediatrics/adults) and into a private room. Since the whole floor had started off as peds, there was carpet in the hallways, the most gorgeous wallpaper border (some Mediterranean seaside vistas), lots of primary colors (rather than hospital puke green) and the rooms seemed larger. Jim was only slightly better in that room though. He was back to being very confused and frankly "demented". During the night, he had even attempted to get out of the bed (crashing to the floor) and now had a bed alarm in case he tried it again. In talking with another "new" set of nurses, and looking at his charts, I found that they had no information about Jim's mental condition. They thought he had always had those problems - and of course by their records they thought he was only a 9 day patient (what is this now? day 43 of 45, I think. I losing track it's been so damned long). When I explained that from Sept to Feb, Jim had been the top salesman at his dealership, they were quite surprised at the condition he was in now. (I told them to go chat with the 8th floor oncology nurses about "hospital psychosis") Then I went to work for a few hours, where I probably spent most of my time updating Jim's old colleagues on his condition (he worked with this dealership for about 6 yrs, and I did their computer tech work for 4 yrs). Stopping back by the hospital was really disheartening. Though Jim's physical condition wasn't worse (matter of fact his blood work is really coming around now; though after lying in a bed for 9 days straight this time around, he is quite weak as you can imagine), his mental problems were still very present. I took a look at the notes he had been making about changes to our patio and ideas for Pooltag floats. Although it's good that he's thinking into the future and making plans to still be alive when he turns 52 in July, I couldn't make head or tails out of what he had written or drawn. (only one phrase "personal debt" was legible, and I think that came from a frequent commercial running on the TV lately) I had to explain that his back wasn't broken; his muscles just hadn't been used and weren't working right. I also explained that there wasn't fog in the room, the spider webs in his hand were actually his hairs which was coming out because of the chemo, and that the undulating unit under his air mattress was not two guys (Chuck and Larry I think he said) that were wiggling their fingers under his back. He said a lot of other really off-the-wall stuff, while he eyes were constantly darting around, to which I could only nod agreement and force a smile. Although seeing Jim nearly dead of starvation last Monday was the worst, having a "crazy" boyfriend is no picnic in the park either. I'm endlessly answering his same repetitive questions about why is he there?, why can't he get out of bed?, what's the plan?, and why can't he go home? HIV, non-Hodgkin's lymphoma, starvation, chemo, now (hopefully temporary) dementia. How much more can a person endure? I sure hope the docs are right and all this suffering Jim is going through is worth it. I really miss my Jim. (PS I'm turning MY phone off tonight) 4/16 Tonight as I sit here rethinking the day, I realize I'm not really feeling too much. The routine of the end ups-and-downs is actually becoming routine. Maybe getting out with the "real" people in the world some - and not just talking about what's happening with Jim - has helped bring me to a mild sense of peace about the day. Before going to bed last night, I had talked with my late partner's mom (who was a nurse for many years) once again. She was surprised at the things I was telling her about Jim's dementia. Without knowing more about his case, she suggested I talk to the doctors and perhaps see if the CAT scans included his brain, which might be being affected by the cancer. And it was a good thing I had turned off my phone last night as Jim called five times! My voicemail was filled with "crazy" messages. When I called him back after I got up this morning, he was wanting me to pick him up in the "normal place". I asked him why?, and he asked if I had been watching the news? The world was ending and he wanted to go home before the earthquakes and floods hit the area. Oh my! Following my mom-in-law's advice, I had left word for Jim's doctor to call me. When she (the doc) did and I told her I was worried about Jim's condition, she knew (having seen him before I got there) immediately that I meant him mental condition. Right now she (and doctor1 and doctor2) thinks that perhaps it's a combination of the meds Jim is on; so they will be switching one and slowly weaning him off another (as it is a steroid). The doc was also calling a neurologist in on the case. Getting to the hospital, I stopped by the 8th floor first thing to see if my muffin containers had been emptied (I have to watch those things, or they'll just "walk" off all by themselves. LOL) Jim was still pretty messed up when back down to the 5th floor to see him (who wouldn't be having been moved at 2am to another room!); but was trying hard to focus (after the doc has visited) while we chatted for about 45 minutes. He really seemed to understand that he was not "himself"; but just couldn't shake the paranoia or disbelief in his hallucinations. After leaving Jim to go put in a few more hours of work, I had a stupid little tiff with the nurses on this new floor. and they told me that Jim was going to be transferred back to the 8th floor. I simply asked the 5th floor nurses to give me a call if Jim was transferred before I got back, and you would have thought I was asking for the moon. I thought I was nicely explaining how we had been there for 45 days and several room changes had occurred in the middle of the night. I wasn't sure whether Jim would be coherent or not to let me know about his new room and didn't want to wander the halls calling his name. As the crowd grew (and I could see that "call security look" in their eyes), I told them just to not worry. I'd simply go back to the 8th floor and ask them to call me. In my best flaming mode, I told them that I hadn't meant to cause such a ruckus for a simple 30 sec phone call and that my next batch of muffins would be for the 8th floor crew again, and "those" people wouldn't be getting any of MY muffins. (throwing in some cuss words in my rant in the Catholic hospital gave me some satisfaction seeing their shocked faces. I told you that "leatherman" was a baaaad guy. ROFL) Coming back after work and grabbing a bite for lunch, I found that Jim was no longer on 5, so without speaking to anyone there, I headed on up to 8. As I walked down the hall, one of the nurses (holding a phone) came towards me laughing. I answered my ringing phone and she told me that they had just gotten Jim settled into his new room. Talk about good timing. LOL Jim seemed much, much happier back on the 8th floor and was better during the afternoon. We shared a piece of carrot cake, while we chatted and waited for the hospital to get their cable TV fixed and back on. I left him to take a nap. But things didn't work out for Jim's nap. First, the neurologist stopped in, and an MRI is going to be done to check Jim's brain. Then the physical therapists (finally!) showed up and put Jim through the paces of bed exercises. Then the cable came back on and he ordered dinner. Then he tried to contact my Ohio mom to get her to come up for a visit. How do I know all that happened? In the three hours I had tried to get home and get my own dinner, etc, he called about every 20 mins. to update on all the "progress". LOL Then he called again to ask me to bring the charger for the phone. (and think. just the other day I was complaining that he couldn't talk at all, and how I missed his calls. ROFL) After dinner, our picked up my local mom and we went to visit while Jim was still in a "good" condition. The visit went well; but the paranoia came back is it grew closer to our leaving Jim for the night. To top it all off, (I thought of it as a "miracle", while Jim thought of it as "the end of everything"), Jim's cell phone fritzed out. Taking it apart and dabbing some moisture off the battery, I got it working again (damn!) and I didn't leave the night nurses to a raving lunatic. LOL Speaking of the night nurses, and just the nurses in general on the 8th floor. I found out that they requested to have Jim moved back, and cleaned up a "spare" room where they had been storing chairs and IV stands, just to have him back up there and in a private room (right across with his nurse's workstation). Nearly all the nurses poke their heads into the room whenever they get a free moment just to check on things. Several of them, went out of their way today to talk to me. And of course give me the lecture so many of you do. LOL ** Sad to say, but I guess seeing us going through so much for so long, it's hard for them not to take a little bit of extra pity on our plight. Maybe this extra TLC will help Jim pull through this and start having more UP days then UP-and-DOWN days. The muffins MUST have done the trick! ROFL **"Eat right, get some sleep, don't wear yourself out, yadda, yadda, yadda." I really do love you all and thank you all for the constant reminders because I do HAVE to keep doing those things you fuss about if Jim AND I are going to get through this - and I do need those reminders. PS I just turned my phone off for tonight. 4/17 WooHoo! No calls at all last night. When I called Jim this morning, his doctor was just coming into the room. Since the cell phone is working again (I am his hero for that! LOL), we used the speakerphone to conference. An MRI is on the schedule for today (the doc says that will confirm no tumors in his head and check for any small seizures (from the malnutrition) that might have caused the confusion). She also said that it's quite possible that Jim may be released to rehab tomorrow for about four days to a week to recover before finally coming home. After she left, Jim told me had had eaten a whole bowl of cereal, half a bagel and half a honey bun this morning. He wanted me to know that he is really trying hard because he really wants to come home to his house. I didn't get the chance to do any work today, because things were pretty busy at the hospital. Jim was doing much better than he's been in days and days. He even has some color back in his cheeks (and that was before the unit of blood they gave him. LOL his platelets etc are nearly normal but the doctors thought a "boost" at this point sure wouldn't hurt.) Jim was nearly his old self again chatting with me and the nurses throughout the day. He had one scan done (checking for clots again), physical therapy (where he finally got out of the bed for the first time in probably 10 or 11 days!), and then the MRI. Since all that came during the middle of the day, he missed lunch and was snacking on some cereal and a banana when I finally got out of there this afternoon. On my last visit of the day, he was finally getting around to a late supper (everything was off because of all the tests in the middle of the day). He asked and I explained that he needed to be eating "more", not just eating "some". I was pleased to see him eat well over half his dinner tonight. Unfortunately, some depression hit him before his regular evening paranoia. He really wants to go home and I can't say that I blame him. I find myself feeling a little bad because instead of saying "just one more test, honey", I'm back to saying "just one more day". Those statements can be misconstrued and eventually seen for the white lie that they are. Since I don't know enough about what happens in the rehab facility, I can't say whether Jim is well enough to go there as early as tomorrow; but I can say that he was doing a lot better all around mentally and physically today. Although I was tired, I took some time out for myself. I had a nice hour or so of playing euchre, seeing some friends and eating fresh-from-the-oven homemade angel food cake with strawberry slices for the topping. MMMMM 4/18 Unfortunately this wasn't a good day at all. Around 6 this morning, Jim left a msg saying that he couldn't breathe. When I got to the hospital I saw that Jim was on O2 again. He's also gotten thrush again, and was very depressed, though not very "confused". We had only a short talk before I went to work, and when I stopped back by for another short talk right I had gotten lunch. What distressing talks they were too. Basically, Jim says that he has given up. Yes, I said all those positive things to him that I could; but he didn't want to pay attention to any of it, so "bad" leatherman had to take over again. I explained that it would not be ME making this decision. If he was unconscious or comatose, that would be one thing; but if he feels he wants to quit treatment and come home to die (especially when he's come so far through so much), I told him that he'll have to be the one to make that decision. He'll have to tell his doctors and fight them to make it happen. I told him that I refuse to take up that fight for him; but I'll be there to take care of him if they send him home. Maybe I should have tried harder; but I'm not going to beat myself up over this. God knows, I have tried my absolute best to help Jim through this crisis. Unfortunately, I'm just not qualified to be able to help him anymore. Because of my position, I've had to "keep my options open" for whatever the outcome would be. I've understood from the first that Jim might not make it, and I sure can understand why he wouldn't want to go through any more "treatment" to get better. I made one more trip to the hospital this evening (all of them were short visits today). Not only had Jim not eaten all day; but he had refused some meds - the very meds that would clear up the thrush, that would allow him to eat, breathe, and talk better again. After some talking (well, fussing actually) I got him to concede to the meds, to brush his teeth, and to just let the nurses do their thing one more night. I told him bluntly that he should have picked a better night than a Fri (when HIS doc will be out of town for the weekend and her replacement filling in) to try to get AMA or Hospice out of a hospital. (Personally he can't do the AMA cause he couldn't even crawl out of the bed and I'm sure not taking him home to care for him without the adequate medical supplies. So there!) Afterwards I made arrangements for some of our friends to contact me tomorrow. If Jim has a good day tomorrow (I'm going to hope till the end, no matter what he thinks right now) then he's going to be getting some visitors. I hope this isn't asking my friends to come see Jim one final time, as much as I'm hoping that someone else will be able to give him the encouragement that both of us are sorely lacking right now. I found myself, after all the ups and downs of this rollercoaster, simply frustrated this evening. Not mad, not sad, not glad. Just frustrated. While talking with Jim, I really was a bit snippy; but I only shed one tear when I told him I was mad because I hadn't come to terms with his death as much as he obviously has. I also found myself feeling that old deja vu again. My poor ol' Randy had been so consumed with thrush in his final days. (It has always scared me since. All those times I quit my meds (because of the side effects), I always rushed back to the doc to try something else as soon as I saw those first flecks of white.) Now Jim has thrush really bad. I'm talking about Hospice Care with my partner again (13 yrs, 11 months, and 2 days ago today). I'm freaked out between the crisis and work and money. And, just like with Randy, I feel myself starting to draw away. Arranging for the friends to visit will perhaps give me time away. I also told Jim that if he was going to be coming home this way, then I was going to have to be away more in the upcoming few days, so that I can get the rest I need (and the house organized) to care for him in the next final weeks. It was a truly beautiful Spring day in Ohio, and finally a toasty 77 degrees. So I donned a speedo, my headphones, laid out a towel and ended up falling asleep on the deck by the still-covered pool. Unfortunately it was a restless, sweaty nap as I continued to think about all of this situation. Tonight, I'm turning off my phone and setting my alarm for 10 am tomorrow; though I doubt I'll sleep that late. It'll almost be like sleeping in with no obligations ;) 4/19 am Things are looking very badly now, folks. I had held onto the hope that his thrush would be better this morning; but instead of hearing from Jim, it was his doctor that called me. She told me she had been informed of Jim's resignation and request to be released home. It's quite possible now, that I will take back my words from yesterday, and help Jim make that request after all. The doctor also told me she had a chest x-ray ordered as it's very likely that Jim has pneumonia, and a new antibiotic has also been ordered. He's anemic again and running a fever (102 last night, 100 while I was there). He's only slightly confused at times today thankfully. Although it's incredibly hard to make out anything he says, he was able to write well enough to communicate a little bit. I'm terribly afraid that "the" decision is going to fall into my lap by Monday (if Jim survives through the rest of the weekend). But at least, I have finally reached a decision on what to do. Because of how he spoke of going home the last few days (while alert and coherent) and IF Jim does have pneumonia, then if the arrangements can be made, I will bring Jim back home one last time Monday. I would be extremely happy to receive a miracle right about now; but I just don't see that happening. AIDS, non-Hodgkins lymphoma, malnutrition, chemotherapy, thrush, and perhaps pneumonia. There's only so much someone should have to suffer through, and Jim has suffered for long enough. Please keep us in your thoughts and prayers for a little while longer, so that I can get Jim the comfort, solace, and peace he so desperately wants and needs. 4/19 pm It wasn't pneumonia after all; but a pluvial effusion (fluid "around" the lungs, instead of "in" the lungs), which is still not a "good" thing; but at least not quite as drastic. Jim was only in a slightly better condition this evening - mainly because of my last ditch effort. This has been not only a long and hard struggle for Jim, but for me as well. Then again, I'm sure you know that by now. (Obviously he and I still have a lot of negatively left in our thought processed and reasoning from the loss of Randy) I nearly lost all hope again today and seriously fear that it will be gone if a "next" crisis arises. But I've said before, it takes effort to change the things you don't like, so I came up with one more plan to force fate to go the way I want it to. I've listened to a lot of advice and put the pieces together Part one of my plan was to get Jim to sign a new will. The only one here at the house was written in 1990 and gives it all to his ex from over 15 yrs. ago. (Lordy! Me and my Randy are the witnesses signed to this document! This doc won't get trashed though it's invalid. It's got Randy's signature on it - just another little stab at my heart from the past - there's a box of mementos just for a piece of paper Randy wrote on) Jim had talked about changing the will several yrs before (everything I have done I can honestly say I heard him express approval at some time), so I wrote up a new one and it was signed this evening. I don't know how much it'll help me in the days to come; but if it keeps the roof I need over my head, then I'll wave it around like I did the medical POA. I also thoroughly explained his options now. One probably means another week (or more) in the hospital and then several weeks in a rehab hospital (without too much bitching about "going home" if he makes this choice); but the payoff is spending at least half the Summer by the pool with me. The other option gets him home; but not home to ever drive his car again, to even see the patio or pool again, or to sleep in his own bed beside me. It gets him a nice "peaceful" passing in the surroundings of his home. But even "peaceful" isn't guaranteed, as slowly dying isn't nice at all no matter how many pain meds you get. Part two of the plans was to get "outside" intervention - for both Jim and I. first, I needed some help for my own emotional state. I called RealMom and Mom-in-Law, who, though very saddened, could sympathize with where this situation is headed. They validated my reasoning and comforted as best they could. They helped me make peace with what life seems to have in store for me. OhioMom had a different point of view though. In was at this at 7-week point, that her husband had still been hooked up to all sorts of equipment (he had no living will and was kept alive by machines for a long time) and ambulanced to a nursing-home style hospital, where, though they never expected him to live, he recovered and was home 7 weeks later. Jim only has O2 and an IV. No one has ever called from the hospital as he was about to expire. Even in the horrible condition that he is in, it's still better than the OhioMom's husband was. I guess it really is still possible to hope! (this rollercoaster never stops! this must be our third time around this track LOL) secondly, I needed witnesses to Jim's new will, so the Ohio mom, her son (my best friend, besides Jim, of the last 20 yrs) and his wife (who visited Jim the other day.) all came in together. Actually the real reason I needed them was to encourage Jim; but they worked out good handling some more of that real-world-that's-going-by-me important paperwork. As they arrived, joking and glad to see Jim, he perked up the most I had seen him the whole day. For a while, our gadfly friends chatted Jim up about a new vehicle OhioMom got, a new out-of-town job her son had just come back from, and which of the "nieces" and "nephews" were sick or maimed. LOL I nudged OhioMom into gear, and she spoke so softly and so eloquently, saying so many things that I was unable to say today. She talked about her husband's illness and recuperation; she talked about her own trauma from being the caregiver. She explained Jim's up and down illness (which brought a laugh to us all, as Jim was still having difficulties speaking, so he undulated his hand in a dramatic effect and we all knew he meant "the rollercoaster" of this crisis. LOL); and the hardship I gladly bear already caring for him, as much as the grief if I was to lose him. Everyone else in the room took turns, adding their own words of support and encouragement. Oops. pardon me for a moment while I go tend to my cocker having a seizure! This makes the third or fourth one he's had in the last few years and the last one was just a little over a year ago I think. Ah, the fun never stops at leatherman's house of horrible happenings. - - - - Well there was another 15 mins of my life spent caring for another being in physical distress. LOL I've been keeping an eye on Aries for a while as he's lying right by my feet, and I think the worst it over. (I have officially decided NO more dogs or boyfriends when I finally "get rid of" the ones I have. ROFL ) Back to my plans. I don't know how well the second part of part two of plan worked. Jim smiled some and perked up, adding rolls-of-the-eyes and hand gestures to stop OhioMom from going off on one of her many tangents. After brushing his teeth, and clearly some thrush out of his mouth, he was able to speak to all of us some and was a part of the conversation. However, just before I left, he last words to me were "doc-tor isn't com-ing in till mon-day,[big breath] right?" I knew that meant he was still wanting to leave the hospital with Hospice on Monday. Hopefully he'll think about the things we said, and try just a little bit longer. Tomorrow's plan is already forming. More friends are scheduled to visit (at Jim's request, one at a time) and a few phone calls are going to come in. I've told the call-in friends that he might not be able to reply well, so tell him that you understand why he can't speak much, give him some support, and just let him know that you care. There's still a day and a half of ups-and-downs we can have on this rollercoaster before we reach the spilt in the tracks on Monday. If "going home" is still his choice, the doctors will have their own bits of advice to add. (Did his viral load drop significantly yet? Did the MRI show any brain problems? Did the scan reveal the tumors finally shrinking after the chemo?) I hope the intervention plan and some improvement in his condition will steer us one way; but I know if things don't change enough (or heaven forbid, worsen!) then our spinning wheels might fly off the tracks.

Week Four: 4/20 am Things didn't improve by this morning and the three main doctors had no possible prognosis (good or bad) for several more weeks. That's not good news though. It means Jim would have to continue suffering like this for a few more days to see if his viral load was dramatically low; or another three weeks until they could scan him again - and then with no outlook on whether the tumors would have grown, or shrunk. Jim was very alert, though still not able to talk much. He definitely made his wishes clear to the doctors and me. He's tired and he wants to go home. Well I did make that a part of my promise such a very short (though it feels long) time ago. He has certainly done his part and tried for as long as he could; but it's time now that we face the inevitable. Early tomorrow morning, several of the doctors are meeting with Jim and I. I'm certain they're all on board now for releasing him from the hospital and getting Hospice to get things set up. I'm imagining that by tomorrow afternoon, an ambulance will be rolling up to the house again. I have had to call all my friends as I did almost 14 yrs ago to help get things cleaned up, and come in to sit with Jim while I run errands over the next few days. The same cast of players who helped Randy and I, will now be helping Jim and I. Also like with Randy, I feel that Jim is sick enough that he won't be home too long before he leaves me. I never dreamed I would be so sad like this again in my life. Thank you for your support while Jim struggled in the hospital; but it is time to give up the fight against odds that are too high. All I ask now, is that we all pray for Jim to have a swift, peaceful passing back at his home. 4/20 pm Can you stand to stay on the ride with us just a little bit longer? You may want to just wait until tomorrow morning's post to really evaluate the situation. My plan seemed to have actually made a small difference this afternoon, and extended into the evening. As we were nearly finished with readying the house (with medical supplies, tables, chairs, linens - everything but that damned hospital bed) and getting it sparkly clean, Jim called me. He said he wanted to talk to me about something very important and asked when I could come back. Of course, all the cleaning supplies were put away, the last swipe was mopped across the kitchen floor, and we were out the door. At least for now, Jim's attitude has improved and he has said that he's willing to continue being treated for a while longer. He allowed the blood transfusion, that he refused this morning; and he even ate a few slurps of jello and a piece of grilled chicken breast. It was all a very very difficult chore for him to do; but he gave it a good try. We talked again about waiting for some more conclusive results (by mid-week) until such a "final" decision is reached. The hospital gave him some sort of sucky-tube thingie that has helped him keep his mouth cleaner - which has helped to make his speaking a little better. So this afternoon, Jim was back to really considering his chances and options, which is a good thing. The best way to make the right choice is to have it be an informed choice. There is still a pow-wow decreed for about 730 in the morning with Jim, me and the docs. The nurses know of his change of heart this evening; but I kept hospice on call, just in case. I'd like to be more enthusiastic; but as one of the nurses was saying to me, we have listened to Jim request leaving the hospital for hospice care for about the last 6 days. While it may have started during a "confused" time, it continued through the last several days of clarity. Days in which he was exposed to the facts of what each option truly would mean. ("Going home" sounds all fine and dandy; but in this case it means "death") You know how I have analyzed every bit of the situation and tried to always make the right choices. I really did think this morning that we had made the right decision - though a tragic one. However, it's not like anyone is in a rush for Jim to pass away, if he wants to try a few more days, well, he's already there in the hospital so they might as well keep caring for him. I'm all ready if this is going to be a turn-around for Jim (I told him too that he'd had to curtail the crying about wanting to go home all the time if he was going to commit to waiting a few more days. Trust me, I said it lovingly, but firmly). However, I still must be prepared for the outcome more likely to happen. If Jim's condition worsens by in the morning, or by the next day, I really would expect him to call it quits. And I can't say I'd blame him. I'd also hold some reserves about Jim's change of mind; because of what I believe some of the reason to be. (Remember, what I know, he knows; we finish each other's sentences; my mind to your mind sort of crap. LOL) Jim is saying that he will try because he is doing it, not for himself, but for me. The thought of how devastated I would be to have lost a second partner, and at nearly the identical time of year, may be what spurred him to "wanting" to try to hang on a little longer. Perhaps it was my own "good guy" example coming back at me. Although Jim and I really were acting like a couple for the last 7 years, it's only be official since Dec 2004. From the day I made a commitment to him (which was an emotionally hard choice for me to make after losing Randy and being alone and sick for so many years), from that day, I have taken my meds as much as possible. (You know me, can't puke on the roller coasters, so no meds when we go to an amusement park LOL) I tried to be as compliant as I possibly could and I have the numbers to prove it! I finally even reached an undetectable viral load! I always love pointing out the graph of my numbers. You can easily tell when I changed for Jim, because the lines have been nearly level for four years. I did that for him, because in making a commitment to this relationship, I felt obligated to try as hard as possible to never have Jim have to care for me the way I did for Randy. Not that he wouldn't do that for me; but because that what's you try to do when you're in love. Usually they say you have to want the change for yourself and not for someone else's sake. I don't want Jim to needlessly suffer just for my sake, so I hope that he wants it for himself also. Who knows though? I did it for him; maybe he'll be able to return the favor, hang on a bit longer, and finally recover. I promised I'd help him through this, and I'm more than willing to try as long as he wants to - no matter how bonkers it makes me. Facing your own mortality is a difficult thing. Once I chose to leave a hospital and let whatever happen happen. But I was alone, bereft of Randy and in a different mindset back then. Jim's got me and I'm happy to accommodate his whims. So right now whatever happens tomorrow morning is anybody's guess. ----------------------- Before I finally crash for the night and pretend to sleep, I have some other news about the hospital. Things are rather odd on the 8th floor right and those wonderful nurses must be as frazzled as I. On one side of the hall are at least 4 patients recovering well. With loud boisterous visitors, and doing their exercises walking down the hall, there's alot of activity going on. On the other side of hall is Jim whom they have cared for so many days, and whom they know may be giving up after such a long time. Another patient in critical condition has been moved in to the room next to Jim's. It's that nice older man that shared the double room with Jim so many weeks ago. They had both been expected to be released on the same day back then, and while Jim had low O2 had stayed, this man finally got out (and as well he should have! He had been in for 4 more days than Jim had right as Jim neared the 30 day mark). The older gentleman did well for a week or so, but had returned during this last week. Tonight his kidneys had shut down and the hospital was making him "comfortable" rather than giving him any further treatments. His wife and I compared our sad, similar situations over the last 50+ days. The conclusion to that couple's travails is now inevitable; while the future for Jim (and I) is not yet written in stone. 4/21 am Arriving at the hospital at 630 am (omigod! I was up before the sun was!), I was pleased to just sit and watch Jim sleep for nearly an hour. I know he was pleased to see me upon opening his eyes because I got a smile and a wink. Ahhhh! His attitude change (from "going home with hospice" to "giving it a few more days to turn-around") was still in place. The doctors, giving him the news that his blood counts (platelets, white cells, hemoglobin) were all going back up, were happy to hear that he still wanted to wait a few more days. His GP told him how much she understood how terrible he was feeling and that she understood Jim would be just taking this day-by-day hoping to get some improvement. After the doctors left, I got Jim shaved and washed up. We ordered breakfast, and I ate his frosted flakes, while he tried a popsicle. He's still having a terrible time swallowing (even liquids), so hasn't been able to take his HIV meds the last two days. Some of his other pill meds have been switched to the IV for the time being. Physical therapy was in today, and Jim did 5 extra reps of each of the exercises - trying to impress me that he was really giving it his best shot. (It's nice to see my old Jim back the last few days, even if he is so desperately ill) After all that, Jim was ready for a nap and sent me home. I have scheduled up people to visit him throughout the day, and everyone is keeping in touch, so there aren't too many visits wearing him out. It'll be tricky to balance enough visits to keep his spirits up without too many visits keeping him from resting; but we'll work it out. Though I was up way too early, I don't go back until this evening, so maybe I'll nap by the pool again this afternoon. This may be nothing more than a temporary reprieve (for me mainly), but I appreciate Jim's effort. Yesterday, I was seriously faced with the fact that he may be coming home soon and not coming home to recover. I got my mind wrapped around that (meaning I freaked out and was nearly unable to stop crying all yesterday during the day), and now feel better prepared to face up to my duties of caring for him if he comes home to pass away. (having been a caregiver before I know it's like that. sometimes you break down for a while; but when it blows over, it's easier to go back to handling the details) Having some time off from the hospital, and knowing friends are there filling in for me, sure has helped too. both of us still hanging in there, mikie and Jim 4/22 2am After leaving Jim this morning, making sure friends were stopping by all day, and making arrangements for more visits tomorrow, I didn't return to the hospital until dinnertime. I wasn't planning on staying very long; but coming back after a trip over to my OhioMom's for a while. However, Jim broke down and asked if I would stay the night. (I think that was my clue to what was coming later in the night) I told him I'd need about an hour to run home, grab some sweats and my pillow, feed the dogz, and pick him up some jello. When I returned, he wanted a serious talk. And boy, did we talk! He has whole-heartedly decided to leave the hospital tomorrow and come home. I too think it's best to bring him home now while he can still talk some and actually get some enjoyment from returning to his home. Since his body is already out of the habit of eating or drinking, after removing him from the O2 and IV nutrients, I expect Jim's passing while come fairly quickly. Just before the hospital locked it's doors up for the night, I made one last trip to the car for a smoke (or 2 or 3) while I called the Moms and told them Jim's decision. And it was a good place to be alone for another crying jag. I had planned to stay the night with him (lying on another of those fold-out chairs) but around 1am, with nurses popping in every half hr, and (according to Jim) my loud snoring, he told me to go on home, so I could get some rest. I promised to return by 7 so that I can help him talk to the doctors, set up things with hospice and get him released. I'm not surprised at this turn of events, as I told the moms, for I had thought we had only put off hospice care for a day or two anyway. Poor Jim is just no better, and can no longer bear the pain, nor the "torture" of the hospital. I have to agree with him, that this treatment seems more like torture and I am so sorry that he has had to endure so much with so little results. But we had to try, and we all gave it a good try. With everything ,except a hospital bed and pain meds, all ready at the house, tomorrow I'll bring Jim home. There'll be no yelling at him to eat. We'll watch "Nightmare before Christmas" and "the Phantom of the Opera", and we'll take it one day at a time until the end. 4/22 2pm Of course, none of this has been easy on Jim and I; and trying to get him out of the hospital wasn't easy either. First thing this morning, his GP and one of the cancer docs (both who had been "ok" about asking for hospice on Monday) wanted to talk about nothing except how the sores in Jim's mouth were getting better and that his blood counts were all climbing back up. They didn't even want to entertain the thought of Jim leaving with hospice. But Jim pointed out that we had been told he was "improving" before and this was day 50 in the hospital and his condition was still terrible, so their optimism was misplaced. The docs relented a bit, and said they would send the Hospice counselor around to speak with us, and we could "decide" tomorrow. Jim and I talked a bit more, as I tried to calm him down about not leaving the hospital today. No sooner had I left and gone home, than the counselor came in and I went back to the hospital. While she talked with Jim about why he wanted to leave and what he thought hospice care really meant (it's not like Jim and I haven't discussed the subject to death the last 4 days), the Infectious Disease doc and the other cancer doc stopped by. We now know a new viral load; but it's not accurate at all. Jim's original result was 300,000; the count now is dramatically lower at only 500. The problem is that Jim's white cell count is so low, the HIV hasn't had any cells to attack to reproduce. In reality, he has more HIV than white cells running around in his blood, so percentage-wise, his count of 500 is actually very high. The cancer doc discussed whether Jim would even want another treatment in a few weeks, after having such bad side-effects this last time. By the end of the meeting, a decision was finally reached. The hospital bed and O2 condenser are coming back to the house this afternoon, and Jim will be coming home tomorrow morning, after another diflucan IV drip (to help with his mouth and throat sores). A hospice nurse will also be coming to our house tomorrow to set us up with pain meds, aides, and a schedule for the nurses to come in to attend to Jim. Although it's possible that Jim will perk up (by coming home and from the treatment he's been receiving) and even obtain a bit of recovery, with no further chemo it will be just a matter of time before the cancer does him in. Counting off the fingers on one hand, Jim thinks like I do, that his time home will be short. With all the crying Jim and I have done over the last few days, I hope that I've cried enough. It's time for me to change my attitude so that as I care for Jim, his final days will be as peaceful and calm as possible. It's a very hard attitude adjustment for me and my family and friends to make though, as all of our feelings are tempered by our remembrances of Randy who passed away 14 yrs next month. 4/22 8pm After such a sad morning, it's rather odd but Jim and I both seem to be feeling a bit better. Just knowing he will be home tomorrow, Jim perked up this afternoon. He had a handful of visitors, and talked much more than he had in days. Along with sitting up more, actually watching the TV (when he's sick and conscious, the TV is off. if he's sick and delirious, the TV has been on whatever station he clicked it to), he had the window blinds open all day and only took one short nap. Though it may not be the hope of recovery, the hope of soon being home after so many days, reinvigorated Jim. The guy that set up the bed and equipment back at our house, had delivered last time, and wondered what had been going on. He said he saw this kind of situation all too often; but he offered a story of hope. His finance's father had cancer, and after the 2nd treatment and 33 days in the hospital, left with hospice care unable to bear the chemo side effects. He laid at home like a dead man for a week, and then recovered just a bit. He even started eating some food again. Three months later the man dismissed hospice care and lived for another three years. Although I've resigned myself to Jim's passing, this story gave me a glimmer of hope of that turnaround we have so been waiting for. I think both of us felt better too just having made "the decision" finally. During my evening visit, we chatted quite a bit while watching several sitcoms. It was very nice to see him focusing on things besides how bad he feels. I haven't seen him really watch any TV since he's been in the hospital until today. He's also been listening to my mp3 player, and was even humming along to some songs. Realistically, do I expect a turnaround? No. We haven't planned on his return to be anything other that Jim coming home to die. However, do I still hope for a turnaround? Heck, yes! As I've always said, death is the only problem that can't be fixed. So which way will things go once Jim gets home? We should be able to tell within a few days probably. 4/23 Jim was feeling no better when I got to the hospital this morning. On top of feeling like crap, he is, of course, very depressed - as are many of us around him. Several nurses stopped by to wish him well, and several others offered me words of comfort. By ambulance again, Jim finally got to return to his home today just after noon. Rather than pull into the driveway, the crew unloaded Jim by the street allowing him to see the starting buds on the dogwood tree in the front yard, and to see his house for the last time from the outside. After the crew transferred him to the hospital bed set up in the living, Jim beamed a huge contented smile to be back home. He made me promise to never take him (or his body) back to the hospital. The coordinator/nurse from Hospice Care was over within an hour or so. Of course there was a ton of paperwork, instructions, prescriptions and details to discuss. Although I've been through this before, my anxiety level here on the first day home is quite high as I want to do my best to give him the care and comfort he needs to get through. Thankfully, after 50 days with Jim in the hospital, I know how to perform the routine caring/cleaning duties; but now there's a whole batch of meds that I must familiarize myself with. Our OhioMom was over twice - once to welcome Jim home, and then to sit with him as I ran to pick up all the meds and some supplies. Later in the evening, my OhioSister and her two teen-aged kids stopped over for a brief visit. Once we were alone, Jim told me that it wouldn't be much longer. Sadly, I agree. Though it was a busy day, as evening fell, Jim wasn't very sleepy; but very uncomfortable. A bout of cramps made him moan and cry for nearly 15 minutes. I was very distressed watching him writhe in pain, unable to comfort him. After the cramping subsided (and I cleaned up his soiled linens), I administered a round of his meds, including the pain meds. Within a half of hour, he was feeling no pain and began to finally doze off during American Idol. Hopefully, Jim will be able to sleep most of the night. 4/24 Jim (and I) had a couple of rough spots through the night; but I did manage to get 2 3-hr naps and Jim sleep almost as long. Today was another busy day. Jim's hospice nurse and the home health aide both came over. I'll tell you what, it's a lot easier rolling a patient, cleaning them, changing linens, and getting the patient back to being comfortable when there are two of you. The nurse and aide (Donna and Donna) got Jim bathed and shaved, and took care of several small sores he's developing. They went over the meds and saw that I had everything handled (heck! I'm keeping charts of what meds I'm administering so I don't get confused) Since I'm no dummy and the nurse and aide won't be back until Mon, I brought an old friend of mine over to help this weekend. I explained to Jim that I just couldn't be a 24/7 nurse and that this friend had been the one to help me take such good care of Randy while he was at home his final days. Jim's physical condition (oh, bad news! I had forgotten to mention that the morning Jim was released, the doc told me that he does have a little touch of pneumonia) has remained stable - no worsening; but no improvement either. However, where I had hoped coming home would improve his spirits (and it did for the first evening), the opposite has happened. He tells each of his visitors that "it won't be long now"; while in private, he asks me to guess how long this could drag on or asks me not to let it last too long. I've been having to dreg up those old memories about Randy, and try to relay to Jim some of what to expect. (I know this dregs up bad memories for some of you too; but can you imagine going through it all a second time?!? At times it's so surreal, I can only be numb.) It's a tightrope to walk trying to determine whether to discuss topics rationally, or emotionally. I'm trying very hard to be supportive and not cry (sad and resigned perhaps. wonder what you call that emotion?); while sometimes I have to let down my guard and show him how much this is killing me too. I know you'll understand when I say that I long for the day when this is over and I can just rest. Right the last round of meds for tonight and before I go lay down for a few hrs, and let my friend take over until I'm really needed, I should tell you a bit more about me. Today I got to see my doctor again; but this time I got charged for his time. LOL Yes those blood results of mine were in and to be honest they are what I expected. Last time, the lab had forgotten to do the tcell count, so we guessed it at the regular 250. Now they're 225. Not really terrible for my counts; but I prefer to have them closer to the 300 mark than the 200 mark, because at 200, things can happen - bad things. The viral load blipped up again (from 189 to 2530). Each of the five blips since 1/2006 has been lower than the previous one, which means the blips aren't getting worse; but it is another blip, which isn't a good thing. But I was expecting some sort of blip after having not been very compliant with my meds, stressed out about Jim, not eating or sleeping properly for the last 2 months - the list of the reasons is a long one. The biggest problem with this blip is that it comes at a time when I wasn't uncompliant NOR totally compliant to my meds. Now there's the possibility that the virus has become resistant to my current meds. Thank goodness again, I can say, that the meds are better nowadays! Where just a few years ago, I didn't have any more options; now there are probably 5 other types of meds I could switch too. So the doc ordered up a genotype test (to determine the resistance factor to what meds, and something about a crr5 receptor, and blah, blah, blah. Actually I did understand it all, and have no worries with the doc's line of thinking. (he loves showing me off to the new interns. Not only am I a smart patient; but a patient with compliance issues on a "salvage routine". Oh, and I have a ponytail and had my picture in the paper LOL) At aidmeds.com, I've read up about all those drugs and tests and results. No, I didn't commit it all to memory; because it wasn't a problem for me. I paid attention today; but I'm not worried about the details because I'm too busy determining how to read a 1/2cc of morphine, 2 teaspoons of prednisone 2X daily for two days and draining the foley bag. But, back to the test. Since it's better to find out sooner and later if the meds I'm taking are even working, I went to take care of that, while I was out of the house for a while. And where do I have my labs drawn? Back at that same damned hospital I thought I had finally left just on yesterday! 4/25 Jim was much weaker today. When he wasn't sleeping, he could only talk in short quiet sentences. Although a few in the family were still holding onto hope; I've seen this stage before and believe the end is very near. Can you handle one more instance of deja vu? When I brought Randy home, he only lived for nine days. Between the first time the nurse visited to the second, she was surprised at his decline. I remember the nurse telling me how sorry she was the end came so fast, usually Hospice Care tends to last for several weeks. If she had realized Randy was as ill as he was, they (Hospice) would have done more sooner (Randy passed away after one the second visit by the nurse. They really didn't end up doing very much at all to help because of how the situation progressed. I think it's happening all over again. Since the nurse and aide were here on Thurs, they decided on a M-W-F schedule - that means that I have to (after only one nursing visit) deal with a three-day weekend before help arrives. I believe that when they get here Monday they will be very surprised. However, there's a slight chance things might change tomorrow - as a Hospice social worker is scheduled to stop by in the morning. I'm not certain what her job is; but perhaps (if Jim is capable) she'll be able to help me straighten out paperwork. I haven't found Jim's birth certificate yet (when I have I had the time??). I know nothing about the house or car loans, and only have a witnessed signed will. I found out today when I called Jim's workplace (and heard the answering message he spoke and I put together with music back in Dec) and found out there's no life insurance. Screw the house and car, I don't know how I'm going to have him cremated. And my friend who came over to help? Her gall bladder problem started acting up and she's either been asleep upstairs in my bed all day or downstairs in the bathroom puking. I'm sending her home tomorrow and trading her in for another one of our friends - a nice young guy (straight and cute) who offered to help out. And me? With two sick people in the house, I've been busy as heck. I tried to gather paperwork together today; but that was a lost cause. Thankfully, our OhioMom brought over spaghetti and I did eat dinner. Jim is still demanding me stay by his side quite a bit. And he's earned that right; but the laundry, the dogs, the meds, all call for my attention too. I am trying to stay by him a lot though, as neither of us believe it can be too much longer. I just wish Jim would quit having nightmares. They scare him so. And when he's woken up and grabbed my hand calling out for his mommy and daddy to help, it's more than I can stand. 4/26 What a terrible night it was here at "chez leatherman". Every time one patient would moan or groan it got the other one started. My friend was able to pull it together and help me clean up Jim twice; but was still quite ill by the morning, so we called her daughter and had her taken to the ER. (oh my! she did call me this afternoon and left the info about what room she was in and I never got around to calling her back. But I did get to add another hr and a half onto the half hr of sleep last night, so I'm sure she'll understand when I call in the morning) The Hospice social worker arrived in time for the chaos of my departing help. While Jim was occupied with the departing guests, the hospice worker had a checklist of items to talk about ranging from Jim's emotional state to religious needs to funeral arrangements, even to the availability of "bereavement care" for me afterwards. There's so much to think about and so much I don't want to think about. Caring for Jim really does occupy all of my time now. (here I am supposed to be thinking day-by-day and they're all making me think about next week. hmmph!) But thank you friends and family for prodding me into thinking about the things I HAVE to think about. Thankfully, my replacement help arrived on time, and things got better for me. OhioMom brought the friend over and they stayed with Jim while I dashed out on a round of errands (I just had to get away from all of it, even if for a half an hr. I did get lunch so the trip was good for me that way too) By the time I got back both Jim and our friend felt confident enough that things could be handled, they both demanded that I go take a nap. After an hour or so, a few more visitors stopped by (OhioSis again, and the friend I took the SC trip with way back in Feb when this crisis all began) and I got up to assist. Trying to take another nap, I found myself crying as I contemplated who I would call in what order in case of Jim's passing. As I tossed and turned a while longer, I started writing Jim's obit in my head. I napped a bit more and came downstairs for dinner and Jim's bedtime meds. Hopefully, tonight will be better with fresh help. Hopefully, Jim will rest more peacefully than he did last night.

Week Five: 4/27 What a difference a day makes. After having stayed stalwart through the crisis of the sick help**, I mellowed out and was able to get some good sleep with our other friend helping out. He's been a real trooper through quite a lot now and has my un-dying gratitude. All three of us even slept in on this Sunday morning from about 5 to 10 am. Then this afternoon, I finally got the chance to break down a bit and have my emotional needs tended to. (**she's in the hospital now with either a urinary tract or kidney infection and has sepsis. she sounded 1000% better on the phone and may be released tomorrow. I told her that Jim and I had heard that line before. LOL You gotta watch those hospital, they won't let you go!) This afternoon Sunday at my OhioMom's came to our house. My OhioSis (still full of blind hope**) came over and cooked beef and noodles and whipped some mashed taters as the side dish. While she was hoping Jim would be tempted by the smell and at least try the broth, I very much appreciated some real home-cooked food. (**not that I'm complaining but it must be my lot in life to be caregiver and comforter. Each of our friends is at their own level of acceptance or denial of this situation, and I found myself ministering to their needs - and getting them to accept the inevitable - as much I received comfort from them.) While dinner cooked and the aroma wafted through the house, Jim even played some euchre! But frustrated as he was that his hands won't work properly now, I called the game over (his team won 4pts to 2pts with Jim the high scorer!) when a few other "Sunday dinner regulars" dropped by for a short visit. While Jim and our friend/helper entertained in the living, I received comfort sitting out in the garage where we had to move one of the sofas to make room for the hospital bed. Although I really hate all the crying I've done, it was good to have things going smoothly enough that I had some time to release some the pent up grief. My mom is trying to make arrangements to come up from SC to help me obtain legal aide and get some of the paperwork finished. However, I'm not certain if she'll be too late by the time she arrives in the last half of this upcoming week. Whether she arrives in time or not, I'm very happy she's coming - I need my mom right now. Perhaps we can get legal things done in time to insure I keep the house; but if not, at least, she'll be here to help with the final arrangements. Things are definitely down to "days", if not "hours". 4/28 After the big Sunday get-together, Jim had a tough evening clear up to about 1 am. I was very anxious through the whole time, both fearing and hoping that it wouldn't be much longer. However from 1am to almost 8pm, all three of us sleep - fitfully, but we slept. This morning though I had to make a series of hard phone calls. First to the local funeral home, and then to the local cremation society. The man running the local branch of the society will be coming by at 10am tomorrow to make arrangements. Then I called the local family services org, that runs the AIDS programs, to ask about legal aide, etc. The Ryan White Fund won't pay a mortgage payment; but will pay legal fees for a will. Next was a call to legal aide. Luckily (ha) with my $500 a month and Jim not working for the last three months we qualify for assistance there too. Their rep was supposed to call me this afternoon; but didn't, so I'll be back on the phone tomorrow. Jim is awake for shorter and shorter amounts of time now. Thankfully during the daytime, he doesn't seem to have the nightmares (that have plagued him since that first night in the hospital) that come each evening. The aide was in early this afternoon and got Jim bathed and cleaned up. (Last night my friend and I got Jim cleaned up and even got the sheets changed - he spilt coke on the bed while we were playing cards; but me and another person did it too, it was just that kind of night LOL). The nurse came in later (how sad! two new hospice patients today), and decided it was time to adjust Jim's meds to a higher dose of morphine to try to combat the pain. (She wasn't crying looking at Jim while we talked; but I could see it in her eyes. Everyone knows that it's soon now.) Our friend (Mary) that went to the hospital actually had a bladder infection; but is doing much, much better. She was released from the hospital today, and stopped back by to pick up all the things she left the other day. Other friends brought baked chicken an noodles for dinner, along with their new puppy for Jim to see. Puppy kisses never hurt anyone! ;) While the crowd was leaving yesterday, Jim asked me what we should do for Sean (our friend who has graciously offered to remain here as long as needed) to thank him for helping us. I'm not certain; but I promised Jim I would definitely make it right. This is the rough time. While I still dread and fear losing Jim, I find myself hoping the next deep shuddering breathe or groan is his last. But I've been here before. I know when that happens both sadness and relief will well up and clash. Deep sorrow that he'll be gone, yet blessed relief for both of us when his suffering is over. Jim has suffered more than anyone should have to. Though I had only been able to show Jim the luminere that was sent to him from a wonderful person in these forums, when he came home Wed. I told him how I had been lighting it every night, wishing well to Jim, the other 8th floor patients and all of you people who have shown such support. Every night, per his request, as Jim gets his final meds of the day, we turn off the O2 and light the luminere and think of you as you think of us. Although I should be thinking day-by-day, I do have a couple thoughts about MY future. One, after things settle down a bit, will be to get on the Chantix again and off the cigarettes! Second, in a while longer, will be to volunteer with Hospice. They have positions from clerical (I started in data entry, and am the "computertutor", so I got those skills), to speaking engagements (Have I told you I had a speech minor in college complete? or about playing Snug the lion in 'Midsummer Night's Dream'?), to home health aide (god knows, after 50+ days - I'm not counting any more - of doing and watching, I have those skills down pat! although I can never quite get the depends on right. LOL), to bereavement counseling (oops. I probably need that more than I can give that for quite a while), to volunteer aide. Maybe that's the position. I can handle a little bit of any of those jobs, and I know how badly someone can need that break from constant watching over their loved one. Just having Sean here so I could go get more Coke and cigs or supplies has taken a huge weight off my mind. Oh, I never go very far lest I get a phone call to come home, but for a few minutes I get out in the fresh air and away from it all. Thinking about immediate plans though, I put out another attempt at help. I called the dealership where Jim and I worked many years and talked with one of our good friends - who just happens to be the big boss' secretary. She reads my blog and is up on how things are. I asked her to see if a petition for final arrangement donations could be posted. Tomorrow I'll call Jim's recent boss and propose the same thing. See, with no life insurance, I just don't have the means to pay about $1300 for cremation and an obit. Isn't that truly sad? I believe even without ever finishing up his disability claim, that Jim might be entitled to about $250 from Social Security - but I'm not certain. I am certain that my family is graciously putting up some money; but I now need to turn to friends and acquaintances as arrangements will be made soon (I may have NO choice on when to make them). (I did find an old life insurance policy here but will need the legal help to see if it's worth anything. Now if they'll only get back to me in time!) (If things had gone differently, this was about the time I ask my blog readers to send in a donation to keep my domain (reigningpages.com) online - a measly $150 or less usually. Of course, it's due on the coincedental/deja vu date of May 25th (more on that later). But this year, more important matters take precedence.) So I humbly ask that if anyone would care to send a donation, it can be sent to me at our address, just mark "for Jim" in the memo space. I promise all contributions will go solely to the cost of cremation and the obit. Anything left over will go to flowers at a memorial service. Contact me for more info. Finally, a bit about the memorial service. One the first night in the hospital, I had a thought. Several nights later, when Jim received the cancer diagnosis, he mentioned the same idea to me. It took me a while to ask my mom-in-law her approval of our plan. I had to use email because I could barely think of this request without bursting into tears, much less speak the words. She replied the next day, as I knew she would, agreeing that Randy would have approved too. More than likely, on Sunday May 25th, I am holding a memorial service to Jim, over in North Lima OH, at Randy's graveside. I've already written the eulogy that properly pays respect to Jim, while acknowledging the loss of the two men I have loved. After scattering Jim's ashes there, I'll leave the gravesite as broken-hearted as I was 14 yrs ago, leaving Jim to Randy's care now. 4/29 I changed the total from about $1000 to $1300 this morning after talking with the rep from the Cremation Society. It's $895 for the cremation, another $72 for at least 4 death certificates (at $18 a piece - and I remember from losing Randy that I'll need those), about $150 to run a 25 line obit in the 2 local city papers (those he estimated it at $200), and a $50 home removal fee for a grand total of $1217. There's no fancy urn this way, just his ashes in a cardboard box; and no service of any kind. The rep did tell me that cemeteries "frown upon" scattering remains at a gravesite (not for any health reasons but they make $$ to bury an urn). I doubt we have a problem as Randy's grave is in a small church cemetery on the other side of the road from the church. I'm not certain how many we will have at our "unsanctioned" memorial; but a few flowers tossed over the ashes should cover our activity - besides we're "only" there to commemorate Randy's passing 14 yrs ago. Thank you already to those who responded to my request. Jim's ashes won't be released until the bill is paid; but since our memorial isn't until May 25th, I'll actually have a few weeks in May to get together the remaining money. ----------- Jim was fading away more today. He barely wakes up now. Once when he did and asked for water (for which I had to use a "lollipop" sponge to actually give him the water) he patted the side of my face and say I was his boy, his very good boy. I think he might have mistaken me for Zeus, one of the cockers. LOL (their life has been so confusing too. Alone all that time while I was in the hospital with Jim, then confined to the bedroom alone at night, and outside most of the day; but Jim is so easily disturbed throughout all his sickness, that we've been trying to stay as quiet as possible.) Every time I let them back into the house, Zeus always runs up to the bed, stands up and checks on Jim. If he can reach far enough, he slurps Jim with a big ol' kiss. Regardless of whether Jim knew it was me, or thought it was the dog, it's the sentiment that counts. I had to call the on-call Hospice nurse this evening and Jim's dosage of morphine was upped again. It's scary sucking up that whole stopper of pinkish, raspberry morphine. Oh I understand that it's to abate his pain; but that doesn't make it any scary giving those doses to the man I love. The fluzanacol is finished, and he hasn't stayed awake long enough today to take any prednosone. Our friend Mary snagged us a mask (when she was in the hospital) to use with the nebulizer rather than the tube contraption, so it's been easier to give him the albutarol for his breathing today. His urine output was next to nil today. He is so wasted away now, and his thin little arms are drawn up, hands clasped (kinda like he's praying) under his chin. I also talked with a paralegal and lawyer from Legal Aid today. The will I have should be fine. However with the deed and will (which I turned over this afternoon) there's a chance a "quick claim at death" can be filed to make the house automatically mine; otherwise I'll have to get a lawyer myself and go through probate to settle Jim's affairs. I hope the lawyer stops by her office in the am to check on this "high priority" case before running a "will clinic", or this might not get done in time. My mom and her husband (originally from up here in Ohio) will be arriving by tomorrow night. I still don't know if things will get resolved in time but everyone is trying their best to help me out. I don't think I'll be sleeping much tonight. Not from worrying about any of those problems; but from listening and waiting for Jim's last breath. Surely, it can't be much longer now. 4/30 Amazingly after his 1am meds, Jim and I were both snoring by 2 (Sean had been asleep since midnight. Poor tired guy; but what a great guy!) and didn't wake up until 6. We awoke at almost the same time, and Jim looked over and said "good morning mikie" and probably gave me his last wink. (I can't wink very good, so I blow kisses. Jim winks at me and I melt.) Jim was hurting some by then; but I got that taken care of fast. The health aide was over and got Jim all washed up and fresh linens again. Last visit, she had taught Sean and I how to get the diapers on Jim correctly - after 20 yrs on the job, she had a ton of tips to pass along. Today, she taught me how to deal better with an issue from last night - how to change a patient that is unresponsive and unable to assist. Besides speaking to me this morning, and a little bit in response to the aide, Jim was very unresponsive and asleep most of the day. While Sean and I have been creeping around the house lately and keeping the dogs quiet, things began to change after the aide's arrival. She spoke louder and in firmer tones. I also noticed that Jim wasn't being bothered any longer by the petty little noises in the house. As the day wore on, I finally starting puttering about the house doing light chores since they were not disturbing my honey's rest. The nurse was by soon afterwards. She discussed more of the signs to be watching for as the end is drawing nigh. I think I saw the only sign that matters to me today - about 3pm was Jim's last tiny sip of water. It was at this point with Randy, that I called his parents to come over as the end was imminent. Around 6pm tonight as I was realizing that Jim was no longer drinking, it was my Mom who came over. (I'm so very glad to see my Mom and yet so very sad. I'm just full of conflicting emotions right now.) They left SC this morning and made good time. She called me twice to tell me that they hadn't been stuck at the tunnel, nor did they cross into Ohio and run into a blizzard. Unfortunately when I called my trip-partner from Feb thinking that she would get a kick out of hearing about those calls, I found out she was at the hospital where her grandfather is about to pass away. - oh and my mom-in-law is having serious back problems with a possible surgery at the end of May. She (a formerly LPN) had been planning on coming over this past weekend to help out but is unable to sit in one position for drive a car for the 50-60 min. trip over here. - This is one bad spring all around up here with me and my friends, I'm telling you! After staying for a few hours this evening, my Mom is coming back tomorrow, armed with office supplies, to help me sort through the stack of Jim's papers that I have been collecting from all over the house. I'm hoping Legal Aid calls me in the morning, and I get the quick claim deed handled very, very soon. Tonight we've been playing episodes from "Xena" that I checked out of the library. See, weeks before this started and before we got the new TV service (att u-verse), we had been getting tons of movies from the library (I was posting over in the "movies, movies" thread back then). Just before Jim went into the hospital, we had checked the library catalog online, and requested the Xena DVDs. During Jim's hospital stay, season 1,2,3,5,and 6 had come in; but since I had no time at home to watch and there was no player at the hospital, I just kept returning them. The day Jim came home (a week ago today) he asked me to check them out again. For five days the damn things have been "in transit" and he asks about them every one of those days. Finally, today, when he's not awake to watch, the Xena discs are here. So I'm playing them for him anyway. I think Jim had a sentimental attachment to the Xena show and me. Back when the show was first airing, I was recovering from my two pneumonias and finally starting to come back to life. Jim came over and got involved in the series that me and my roommate deeply loved. (one of my OhioMom's daughters -the LPN turned RN) (Why pack #2 of cockers were named Gabrielle, Joxer, Aries and Zeus from characters on the show LOL) During those years, Jim was like our "third roommate" and it was during that time that we actually fell in love and began our 7 yrs together. I've asked Sean that at least one of the two of us be awake at all times tonight, and he thinks that's the best thing to do to - especially since I plan to make sure Jim stays medicated every three hours. He's suffered enough pain throughout this whole ordeal and really deserves the relief, now more than ever. Thank you for all your continued support, thoughts, and prayers.

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