transcribed without editing from notes taken at the time
Monday Sept 12 - his belly and legs are grossly swollen, and the doctors say they are putting him on a stronger diuretic. He is fairly alert, if not entirely lucid, but also in pain. Skinn stretched that far almost overnight is exceeding sensitive.
Wednesday Sept 14 - Got the bad prognosis - maybe a week to go before the shutdown kills him. Stayed the night, all day Thurs. As of 11 his meds finally kicked in - drowsy and incomprehensible. Dozes if I speak more than a couple words.
Called D - almost both lost it. Called T & S - held it together. J then K called me - he wants to fly out to help and be supportive. I asked him to hold off - I will probably need him after, but for now I just want to spend my available time with (my husband).
11:15 - asked for and received a dose of morphine - the gastric tube is unplugged so they can x-ray to confirm it is in the correct position. Once that is done it can be hooked up and start reducing the gut pressure again. One thing, sadly, has not changed - when he gets pissy he can put an intonation on the simple phrase 'oh please!' that turns the words into a curse. He may still be mostly lucid, but I sense the toxins are doing their work in his brain and I don't know how much longer the essential 'he' will be here.
11:25 and the doctors still haven't stopped in so I have not been able to ask questions. As always, it's a waiting game.
In an odd side note, last night on the trip back to the VA I left the CD/radio off - I didn't want a 'sound track' attached to my later memory of these events. Likewise, although I brought two books with me I have not read from them either, opting to write instead so as not to taint my memory of the books with these events, or the events with an emotional overlay from the books. So I talk to him when he is capable, I watch the 'Care TV' - all beautiful nature scenery with serene 'ambient' - as in mostly unrecognizable but peaceful music. Very restful and soothing, as it is designed to be - kudos to C.A.R.E. (healing healthcare systems).
11:55 just had the x-ray so soon the tube should be getting reattached to the suction, which will relieve the pain and pressure and maybe make him less grouchy. The morphine should have kicked in long since but with the pressure he is still seriously uncomfortable. The one downside to watching the video channel is that considering why we are here watching it, the cross reference to the end scenes in Soylent Green is, to put it mildly, unnerving. I think that might explain in part the weird dreams I had in those brief sleeps I actually had last night.
About 3 PM, with approval of the doctors, I set off and returned with an ice cream soda float, a ginger ale and ice tea! He enjoyed the strawberry and vanilla very much, but it was weird watching it come right back out via the stomach suction tube. He was able to savor the taste and texture, but since his gut has shut down all they can do is pump everything out so his gut doesn't over fill.
6:15 I had thought losing him would be the hardest part. Watching him descend into constant pain while his mind still works is proving much harder. He still knows me, though sometimes he's not sure just how bad his situation is - still thinks he's coming home. That hurts, but until his mind starts really going I am being honest with him, as he asked. When he asked why this was happening to him I choked - half laugh, half sob. I asked him if he seriously wanted an answer to that. He looked me right in the eye and said yes. So I reminded him of the years of smoking that led to the emphysema, the years of heavy drinking that had destroyed his liver and very nearly destroyed our marriage. He thought about it, agreed, and apologized. I know he knew all this, but to have it laid out plain like that made it simple and real and he was able to accept responsibility for his actions and on the outcome for the first time in his life.
However, as his body shuts down, the uneven process is causing him increasing pain. He's had morphine three times today, and has a patch of Fentanyl <sp?> that will kick in tomorrow, but is still in such pain they also gave him an IV shot of fast acting Fentanyl to tide him over. He is getting both a rectal tube, to ease the gas in his gut, and a catheter to drain his bladder - between them he will suffer less distress and the staff will have to deal with less mess. Though his peristalsis has pretty much stopped, some loose stool still seems to make its way out irregularly - the rectal tube will take care of that as well as venting excess gut gas.
I was sent to the day room while these were installed and I didn't argue; I've been there for several of his prior catheterizations and they are never pretty, and I don't imagine having the rectal tube will be any more 'fun'. I already see him in unavoidable pain - I'll pass on seeing the added discomfort caused by attempts to free him of some of it.
6:50 Fetched back - all done, and between the pain killers and the new pipes he seems to actually be 'resting comfortably'. It's hard to see him with three different tubes running out of him, but since none constitute anything but palliative measures both of us are OK with them - they all are simply venting toxins, not feeding him or breathing for him. They simply keep him from hurting too intolerably as his body dies. He is still complaining of pain but there isn't much more to be done.
The sun, behind a veil of rain clouds all day, just made an eye-stabbingly sudden appearance on the horizon at exactly the level to blind me with gold in our west-facing 6th floor room, strangely cheerful ending to an otherwise grim day - not sure how I feel about it. Maybe simply coincidence, maybe a sign of better things to come, maybe a reminder that the troubles of two little people etc etc.
7:10 The glorious gold has turned into shades of pink and purple clouds, though the clear sky of the western horizon remains a delicate dusty gold. The pink bears an unsettling resemblance to the remains of the strawberry soda shake still slowly working through the gastric tube.
Made a bunch of phone calls while on my hour long 'dinner break', which entailed another walking trip, as it seems the VA cafe only does breakfast and lunch. Had I but known that I would have bought something like a sandwich and salad and let it sit until I was hungry. As it is I had a 15 minute walk for over- priced but decent chili.
Sky is now again pale gold with slate blue/grey clouds - a good color combo for business clothes and evening skies. A couple of calls didn't go through as planned for differing reasons, but I'll catch up with them tomorrow. He has grumbled a couple times and even spoken angrily at someone I could not see, but mostly seems well sedated. I have no real hope this peace will last all night, and will probably have another oft disturbed night, but what is one more after so many, when soon he will only disturb my sleep in dreams?
8PM Finally quiet after 10 minutes of madness. He woke abruptly, once again complaining of pain in his feet and legs. I tried to gently rub lotion on them but the skin is too distended and tender. Suddenly, in a move that I thought was just scratching his nose again, as he has off and on all day, he grabbed the tape on his nose and ripped out the gastric tube. Again. He then proceeded to make moves to rip out the Foley but finally calmed down and, after muttering unrelated things for a while, fell back to sleep. The tube can be left out for a while - it needs cooperation for easy insertion, so they hope to persuade him to allow it's reinstallation later.
However, in his ranting I detected the onset of encephalopathy, and this time there will be no bouncing back. I am watching the man I know gradually dissipating like HAL in 2001. To keep him from ripping out other tubes they took my suggestion of the 'mittens' rather than restraints. He still has most of his freedom of movement, but the 'boxing mitts' keep him from using his hands effectively. The nurse made the mistake of putting the right on first, and when she turned to get the one for the left he had already taken the first off. She hadn't reckoned on him being a lefty. So she installed the left one, with no resistance oddly, then put the right back on. He was smiling faintly, as if at a joke only he knew, and muttering obscurely as she tucked him in, after which he dozed off. I was crying a little, because every moment that passes takes the man I married further out of reach, forever this time.
8:40 More tears - I had to request fresh bedding - someone had 'cleaned' the room and mine from last night was gone. The nurse or aide (not sure) who responded is one we've dealt with many times over the past few years. She remembered him well, both the good and bad, and was so sympathetic when she realized how close to the end he is I was undone.
Mow, in a freshly remade bed, with an unknown quantity/quality of night ahead I'm not sure whether to stay awake and be ready when he starts waking up and acting up or take a chance and go to sleep early in hope of getting a little more shuteye than I got last night. The TV options are dismal and I still don't really want to read either of the books I brought with me. The one is too bizarre, the other too vital to my continuing growth. Each serves its purpose but neither was a good choice for here and now. I could walk down to the day room and snag something but am not sure I am up to the task of running both the gauntlet of eyes and choosing from the mess of a collection of reading material I glimpsed.
Before he began his slide into nothingness in earnest two things happened worth noting. He mentioned a lot of people he wanted to find and apologize to. I grabbed a pad and pen and offered to make a list and track them down to do it on his behalf, but he just muttered about 'too many' and drifted off to sleep. When I realized I was starting to lose him I asked him if he could hear me, and when I was (pretty) sure he was listening I told him I forgave him for everything he might have ever done to me. I wanted him to carry a sense of my love into the void, not the 'I know I've been an asshole' guilt he'd been randomly spouting all day. I don't know if I got through, or if I did if it was in time to stick, but I had to try. He had been making an effort to finally take responsibility for all his acts of foolishness, stupidity, selfishness and, yes, pure assholery, so it seemed only right to absolve him as best I could. Neither of us is religious, but this is a concept we both understand, if not follow 'religiously'.
I'm going to try again to get through to him if there is any sign of 'him' still at home tonight or tomorrow. It seems important for both of us to have closure on the bad times and focus on the good. Like when he was waiting impatiently for his pain meds to kick in - I got him thinking about the time we went parasailing in the Keys. I hoped the memory of thrill, and soaring weightlessness and glee would simulate and stimulate him to feel the euphoria and then the meds. I think it did help - I know he enjoyed revisiting the memory, even if I could barely make out some of the comments he made - the smile said it all.
9:15 just looked over - he has somehow wriggled out of at least one of the 'mitts' already, but is sleeping so I don't know whether it is worth it to call for someone to replace it (or them - can't see the other but if one is out the other is or will be).
10:15 He has worked the second mitt off and he is muttering to himself 'come on!' a sort of mantra ha has when something is thwarting him, though what is annoying him I don't know. I did make that walk finally for a book and to warn the nurse who had mitted him that he had gotten one off already, but so long as he doesn't do anything worse we decided to leave well enough alone. I've read the first chapter- a mere 25 pages - and like it so far - very different from anything else in my current collection, and it will do. Going to try to get some sleep now,.
7:50AM Friday Talk about famous last words. If I got 3 hours of sleep altogether spread out from 11PM to 6AM it is an overstatement. Part of the night was spent in a chair at his side holding his hand, part doing Reiki, pat going to the nurse station for water or more meds. He was loudly proclaiming his pain between bouts of arguing with some ghosts and apologizing to others. At 4 the aide told me I needed to request the doctor raise the dosage as they can't on their own. So I went down and formally requested that the doctor be asked for something stronger. As of 6:30 not only had no new stronger meds appeared but it was 7:30 before he finally received a dose of the same inadequate med. Apparently the 'on-call' doc got caught up in something in the ER and never returned the call. Now I wait for the doctors to make morning rounds to make my demand for relief.
Oddly, between howls of pain and 'help me' he has the occasional flash of clarity. When the aide finished cleaning him up this morning and I came over to hold his hand he opened his arms wide and pulled me down for a kiss, saying 'where have you been?' and when I told him I had been here all along he actually seemed to understand that yes, I had been answering his calls in the night, giving him water and doing Reiki. It seemed to help his mood. I promised I was not going to abandon him - I would be with him to the end.
So now I need the doctors to get here. I do have to make that trip home, but will come back with fresh changes of clothes and be here another two days uninterrupted. I find myself wondering if the equivalent of an epidural is possible to block pain in a similar way for patients in this much pain. If it was done below the spot on the spine controlling the heart and lungs it might help a lot!
8:20 Someone needs to be beaten senseless! Apparently, despite orders, it turns out he was not being given his prescribed pain meds! No wonder he was in such pain! So he is about to get a dose, and if that doesn't do the job he'll be put on a morphine drip in a couple hours. I asked about the epidural/nerve block idea for terminal patients and both of the doctors were clearly surprised - nobody had ever asked them about that idea. It will be brought up in their 'rounds meeting' as an option. Meanwhile he is still waiting for the kiss of painlessness.
8:45 AM Friday Just got his new higher dose of Fentanyl. If he doesn't feel significantly better by 9:45 they will start the drip.
9:05 the pain management specialist just checked in on us and he is finally looking and sounding less in pain. Not completely pain free by any stretch, but as she put it his pain had been 12 on a 1 - 10 scale. This dose only knocked it down to maybe an 8, so in 2 hours he'll get another to knock it down further and every two hours from there on.
Now waiting to talk to the doctor about what happens next and what to expect. The doctors are in a 'discharge meeting' which will break up into rounds in about 15 minutes. Once she and I understand each other I will make my way home and back.
9:20 Just had talk with doctor about what will happen. Liver already has stopped working, kidneys still shutting down. With no way to filter toxins and no way to eliminate them the brain will gradually be poisoned but by then he'll be on a morphine drip and far beyond pain or fear. He will finally pass when he stops breathing as his lungs fail. No exact time line, but the staff has been given hell over not helping last night, and she is getting him another dose now to bring his pain levels down still further. Even as we were talking about him doing better he let out a loud groan - clearly 8 or 9 is still too much pain. Once this second dose has kicked in I'll hit the road. Just need to gt a 'watcher' ready to take over while I'm gone. When I get back, if he cooperates, I may give him a manicure - his nails are such a ragged mess it will be more for the safety of myself and his other caregivers than neatness.
One thing I hadn't counted on was her hope that with the continued antibiotics his gall bladder would cease being so inflamed and his digestion might temporarily kick start enough to move his bowels and give him a little more time clear-headed. As long as he is still even slightly aware of me I am staying with him!
10:15 The second dose still not given because the IV blew out and so far a new viable vein has not been found. After so many years of being poked, stabbed and otherwise jabbed he doesn't have any left - they've all been used and abused and cannot be reused. Hoping he can get this dose sub-cu until the new IV site can be found, so still waiting.
11AM They called in a second IV installer, but apparently she had no better luck - his veins are shot. Happily, when I got back from my coffee run (direly needed after so little sleep) an alternative med and method had been found. I didn't catch the med name (will get later) but it is administered 'bucally' - in other words injected in the cheek (face) to absorb there. Can be given hourly at need. On the plus side at least he'll get his pain meds. On the down side they may have to shave him to find his cheeks! Given the options, clean shaven and pain free beats a full bush and pain!
1AM OK, Roxanol (morphine solution) is the new med - no puncturing needed - it gets sprayed on the inner cheek (my misunderstanding) so he will probably be 'out' until I get back, as he got a double dose. Back on the pain management track, and I'm hitting the road finally.
7:10 PM Friday This morning when I left it seemed everything was as good as could be expected. I went home and fed all the cats and attentioned them a bit. Exchanged info with S and T about our respective days, I packed fresh clothes and headed back.
Shock 1 - he was not in the old room, but now shares a larger room next door - roomie is blind and also a 'no contact' patient, so sharing is OK.
Shock 2 - everything about his condition had been changed. Instead of the cheek spritzes he is now on a continuous feed of Dilaudid which keeps him free of pain, but out like a (snoring) light. My first reaction was anger and pain - he is so under that we don't have any likelihood of further conversation - effectively they stole our last moments together. But then, thinking about it - he had not been particularly lucid before I left, and besides we had already said just about everything important, especially the apology and forgiveness, which had left both of us renewed and re-bonded. We had shared old memories and funny stories. Still, it hurt - too abrupt.
Then the doctor came in to see me and explained. It seems the cheek swab med would have quickly destroyed what's left of his kidneys - effectively euthanasia - so they had brainstormed and found this automatic Dilaudid feed was the ideal solution, as it won't have peaks and valleys - just constant relief, and won't destroy him prematurely. They had started him on a 'normal' dose, and he had promptly dropped asleep. They lowered the dose but he sleeps on. They just readjusted it to the minimum possible dose. I will stay tonight with him one last time, and if he does wake up without pain great. If he wakes up but is in pain I'll kiss him and tell him I love him and let them raise the dose again. It is far more important that he be not in pain. In that case, once he is once again comfortably asleep I will pack up all our varied effects and go home start making arrangements and wait to hear that he is nearing or at the end. I can't be angry, though I'm still a bit saddened, because so many people lose loved ones without our chance to set things right.
When the doctor was explaining it to me she counted his breaths - 12/minute then the dose was lowered and an hour later his respiration is down to 8/min prompting the nurse to say that it's just as well the dose has been lowered; this stuff can suppress respiration. Not a side effect I'm in favor of, so I hope once he adjusts to the lower dose his breathing will bounce back to 12/min or they may have to rethink this yet again or they might yet be guilty of euthanasia! I want him out of pain but not prematurely dead!
So I'll probably teach myself to count his breaths and check a couple times over the course of the night.
12:05AM Was wakened a bit past 11:30 by an alarm from his area. It turned out the pump for his meds had not been plugged in and was low on battery power. Once it had been plugged in peace reigned, but of course now I was awake. I had gotten irresistibly groggy and given in to sleep at 10:30, but once awake it proved elusive. So I went to the bathroom, chatted with the night nurse, listened to his breathing - now a fairly steady 12/min - and when she came back to go over what was needed with her successor shift I gave up and decided to read a while.
The Hydromorphone seems to be doing its job - he is sleeping soundly but breathing well and even when disturbed to be checked his eyes barely flick open. He will grimace briefly in pain but is already snoring again moments later. I feel OK with going home tomorrow - he's in good hands, caring and competent.
1:55 It's over. I was still reading when I heard his breathing change. I fetched a nurse who said it was fluid high in the throat, but a cough would clear it. I was dubious, but with the DNR there was nothing to do. A couple minutes later he stopped and I thought it was over. I kissed him and he gasped another breath. Another long wait. Another gasp. I went back and called the nurse to confirm what I already knew. At 1:45 he was gone. A doctor will come shortly to declare him, then I'll talk to an AOD (?) who will answer my questions.
I'm numb, but not grieving yet. At least I was able to keep my promise to be with him to the end.
2:20 Sept 17 Spoke with AOD, received info on available benefits toward the funeral. Got enough info to go forward, though I'm not looking forward to any of this. At least he is finally at peace. Now I get to dress, collect our scattered 'effects' and go home.
Saturday 11:30 AM Got home about 4:30AM - T saw headlights and knew it was bad news - gave me a hug that undid me. Left all the 'stuff' in the car to deal with later. Checked phone - nothing that needed dealing with. Poured a bit of Tully in a snifter and sent out a few email notifications then S showed up and 'invited' herself to toast him with my Tully. OK, got her out and went to bed. Slept deeply - no dreams I can recall.
Wakened at 11:30 by the resounding crash of the new town dumpster being dropped in front - must be a new guy coz the regular one is very gentle.
Called the funeral home in town and arranged to meet. S invited herself along to pick up a couple things (beer and vodka of course) but she had the sense not to come into the funeral home at least.
Happily I had all the necessary info either in writing or in my head and M was extremely pleasant and helpful. I only cried a little and we were able to settle things with a minimum of fuss at a price I could handle. The memorial will be a separate issue to be dealt with next week once I have an idea of what will work easiest for those travelling the farthest. I'm thinking weekday evening. The hardest thing is not having rooms for anyone. S has offered use of her room - that would work for two of them, but I don't want the rest sleeping on roll-aways . At least in mid week the local places won't demand a two night minimum. Still haven't eaten yet so that should be my next priority I suppose.
Sunday 9:30 AM Spent the rest of yesterday in fog except for a few hours. I wanted pictures of him for the memorial, one in particular of him under the flower arch in his tie dye. The search turned out to be both practical - I had to crate a folder and copy every picture I found into it - and therapeutic, as each picture brought up memories. I was stunned at how few I actually have of him, but then I only took up photography a couple years ago. I need to get that new all-in-one set up and see if the scanner will work wirelessly do I can download other pix from photo albums.