The week following Easter . . .

I didn't post much about the last week of Bob's life, as it was an incredibly difficult, almost out-of-body experience. . . an emotionally, physically tough week and I hardly left Bob's side at any point; actually, didn't much leave his side for over three weeks, maybe just to walk the dogs is about it, when things started slowly but surely sliding . . .but I want to write about it, have to, to try to purge my mind of the images that still hold such a grip on me, infiltrates all I think about, all day, every day, just want to make more room for the good memories, the beautiful images of a beautiful person and our life together before cancer. So indulge me, ignore this, whatever. It's really just for me, to get all this out, not much more . . .

Easter was a gift, an amazing, selfless gift from Bob, to all of us, but a day like that was not to happen again . . . Bob's parents left on Sunday, with Nancy and the crew, so happy in thoughts that Bob was doing so well, had rallied for them. "Call when you want or need us up again," were their parting words . . . that night, Bob and I continued to talk and joke around, lots of laughing, sharing, talked about everything and nothing . . . right now, in that crystal clear knowledge of hindsight, I wish with all my being that I had recorded the conversation, had held onto each word in my mind with a tight grip because now, I don't remember what we talked about at all . . . as my dear friend, Lisa, says, If only life came with "Play," "Pause," "Rewind," and "Forward" buttons . . . when it was time for his nightly meds, Bob sat at the edge of his chair, counted out his pills (without resistance or questioning, which he had been doing a lot of in the past week or two, as his mind slowly succumbed to the progression of the disease), downed every one of them without any begging or cajoling on my behalf—even his liquid meds, which he despised because of the taste. With that act, as though suddenly touched by the Fairy Godmother's wand, "poof!"My Bobby was gone, replaced again, with the very, very sick version . . .

Sunday night was the antithesis of the beautiful day we'd just experienced . . . a continuous struggle for both of us, Bob resisting or criticizing nearly everything I was trying to help him with, me begging and pleading for him to take his meds (he had a few that he took right before he went to sleep), to please try to lie down and get some rest; he'd forgotten he'd taken his earlier meds and wanted to re-take everything, then later resisted taking the last of his evening meds because he was sure he had already taken them. . . going to bed might or might not happen, because he was tired but didn't want to sleep, maybe wanted to go to the bed, maybe wanted to go to his chair, couldn't make up his mind . . . I felt so bad that I took that anger and criticism so personally, that I couldn't immediately know in my heart that it wasn't my Bob saying those things—that it was a horrific disease taking over—and respond accordingly. Instead, I cried because I wasn't doing enough, that I wasn't doing anything right, because he's so annoyed and frustrated with my lame efforts, cried because I was watching my husband being taken from me, right before my eyes . . . and I hated crying in front of him, hated adding to the layers of everything he was already dealing with, to have a despondent, helpless wife on top of all that . . . all this is part of the "process," the agitation, the confusion, restlessness, the lashing out—I knew that, from all the reading about hospice and "end of life" processes that I did, from talking to Bob's hospice nurse and doctor, but reading it and living it are two entirely different experiences. Nothing could prepare me for this deterioration of not just Bob's body, but his mind. . .

That night, before bed, Bob sat on the toilet and cried to me. . . cried because he was in so much pain, cried because he said couldn't do all of this any longer, because everything was so hard, couldn't remember anything, knew he was getting so confused but could do nothing to stop it, knew he didn't have much time . . . I can count on one had, with fingers left over, how many times Bob cried or complained in the 19 months this hell on earth has dragged on . . . all I could do was sit on the floor at his feet and hold his hands, or drop my head into his lap, wrap my arms around his waist and cry with him . . . I offered extra pain medication, offered to help him to bed, to his chair, where ever sounded most comfortable for him, which was neither . . . I don't know how long we sat like that, both of us simply crying . . .

Sunday night began the rapidly spiraling downward path. . . I've likened Bob's hospice journey to a slow airplane crash, rapidly picking up speed and barreling out of control that last week, nothing we could do would stop the inevitable crash. For the first few months in hospice, Bob cruised along, more stable than he had been all year—not to discount all the issues that came along following the horrific surgery in August—but we had very few new issues arise those first few months. But, since maybe mid March, every week or so, we'd take a sharp drop in altitude, Bob's health would hit a patch of turbulence then smooth out, though never back up to the point from which we dropped. This pattern repeated itself over and over, till Easter weekend, when the week-long nosedive ensued. . .

Bob's regular hospice nurse was supposed to be out on Tuesday after Easter, but was sick, so a replacement nurse filled in. Bob was responsive and seemingly attentive, but I could detect a lot of confusion, mixed-up information he was sharing with her. That was one of endless things that amazed me about Bob throughout this ordeal, how he could pull things together when he had to—when talking to his doctor or a nurse—no matter how bad things were for him, he had this amazing ability to make things look and sound a helluva lot better than they really were. I don't believe he was trying to play hero or trying to hide anything; it's just how Bob was in everything he did, even in acute illness— always at the top of his game, never played the victim card, even in his most messed up state, was the consummate class act . . .which often made my job all the more difficult, as his advocate . . .

I told her that he's become incredibly restless especially at night, getting up constantly, saying he needed to go to the bathroom; I'd get up every time, but often, nothing happened, so back to bed we went. . . lather, rinse, repeat numerous times, each time seemingly more difficult than the other, I could tell his strength was waning . . . around 5 a.m., he'd finally want to go out to his chair. . . but I told the nurse that didn't want to give him any more Haldol, given the events of the weekend before Easter. She recommended another drug, Thorazine, and called it in to be delivered that night.

Tuesday night, even with Thorazine, was a repeat of Monday, up and down, up and down, up and down all night long. . . at one point in the middle of the night, I heard Bob cry out my name; I leapt from the bed, ran out to the living room, found him lying on the floor in the hallway. He told me he had somehow lost his balance and fell over. More crying on my part, for not hearing him when he got up, for not being with him to prevent him from falling, for the pain he might be in now, possible injuries because of the fall, for the confusing babble that was coming from his mouth, nothing making any sense, because my Bob was falling farther and faster from me . . . I helped him scoot to the edge of the living room steps and we were able to get upright again and back into his chair . . . I don't remember at all, the details, the particulars. Just flashes of memories . . .

At some point early in the week, Bob started a serious bout of diarrhea that just wouldn't quit. Where it could possibly be coming from, I was at first baffled, as he hadn't eaten anything substantial in well over a week. Eventually, I theorized that perhaps it's his body shutting down, releasing anything that was "backed up," so to speak. Narcotics cause intense constipation, and Bob had been on pretty high doses of dilauded and methadone for quite a while (they had decreased it substantially when he was at Bethesda, but as time progressed, very likely the tumor was growing and the need for additional pain meds became necessary again). Along with the narcotics came strong doses of laxatives to help counter the narcotic effects, but from his hardened, distended stomach, it's likely the laxatives were barely working, at best. I truly felt that Bob's body was slowly giving into the inevitable . . .

Because of the diarrhea, we definitely were up nearly every hour, on the hour. I'd hear him waken and jump from my side of the bed to be close to his side as he slowly stood up and made his way to the bathroom. I thought about moving the commode to the bedside but with all we were contending with, I decided it would end up being more difficult. And, with Bob's restlessness, despite his waning strength, he still insisted on getting up and making his way to the bathroom, then perhaps the living room, over and over . . .

At some point, maybe Wednesday it was, Jim and Penny came for another few nights; my mom joined the group later in the week, Friday, perhaps? Much of the details are already a blur. Bob's good friend, Wally, also came up for a visit. I warned him about Bob's condition, that he sleeps most of the day, doesn't appear to be real cognitive, may drift in and out of lucidness—but Wally was undaunted, and came despite Bob's condition. A few of Bob's friends had been so amazing like that, so fearless of the illness, of the situation, and just wanted to be with him, to see him, say "hi," simply because of their love and friendship for Bob. I am forever grateful for Wally and Paulie . . .I love you guys, and Bob so did, too . . .

It was a tough few nights; Bob fell again, Thursday night. Thankfully Penny and Jim were with us, as this time, Bob's fall was not in a "convenient" spot and there would have been no way for me to get him up if it had just been the two of us. On Friday, Penny and Jim ran home for the night (they told me later, that throughout the year, often they had to go home, even if it was just for a night, to simply implode from the weight of it all, to have their own melt-downs, away from where Bob would see them, put themselves together again for the next round . . . I think of them so much, what all of this has been for them, seeing Bob go through all he has, from childhood, on . . . that's a whole blog entry of its own . . .

My mom stayed with us after Penny and Jim left, not wanting us to be alone any more, because of the mounting issues. She pretty much kept to herself in the basement, but like a little magic fairy, would pop up if I needed her for anything—to run an errand, grab some milk, just to sit and talk with us. . . Bob was quietly going downhill fast, needing help, needing something that I couldn't define, so afraid to be alone if something worse happened . . .

The last few nights became a nightmare. . . Bob was getting up every hour, on the hour to go to the bathroom, so weak and unsteady on his feet, but still insisting on going, even medication would not slow him down . . . pretty much every time, there was an ungodly mess in his briefs; thought again about bringing the commode right to the bedside, but quickly realized that would probably be harder to try to clean him up from that point. . . often, we're changing not only the disposable brief, but pajamas, socks and shirt, too. . . some times, I had no other choice but to help him into the shower for a total wash-down, it got so bad. That was so hard to do, given his incredibly weak, feeble state at that point, but I did not want him to be messy like that, I knew he would just hate that . . . that's one thing he'd said all along, is how he just hated to feel dirty, but in his current condition (since the surgery), all he feels is dirty . . . broke my heart into a million more little pieces, if that was possible, to hear him say that—with that simple sentence, summed up the dignity and self worth that cancer and the fucking "curative" surgery took from him, among endless other things . . . often, we had to change his dressing again, too, if the diarrhea was especially messy; often ended up soiling his dressing . . . bedding often had to be changed too . . . nights were long, neither of us getting any sleep at all . . .

Friday (April 29th), his regular hospice nurse popped in for a visit; after sitting with Bob, talking to him and observing him for a while, she pulled me aside and with tears in her eyes, told me she really felt the end was near . . . she couldn't say whether it would be a week or two or just a few days, but felt Bob was going downhill fast . . . told her about the substantial diarrhea for the past few days now; she agreed, maybe the laxatives he had been taking were finally working through his system, maybe his system was just finally letting things go . . . I asked her if there were any meds we could simply discontinue, to simplify things, given he's taking so many but maybe there are some that are kind of pointless now . . . we eliminated a few, to make things easier on Bob. . .

His sleeping patters by Friday had become way skewed; sleeping most of the day—a deep, almost unrousable sleep—and when he was awake, was incredibly confused and nonsensical (which was only for short bouts of time); he often got angry at me, when trying to give him his pain meds, saying he already took them, accusing me of trying to give him too much . . . sometimes I just gave up, to make things easier on both of us, but was fearful his pain will suddenly amp up and cause him incredible discomfort, so I tried as much as I could to convince him that I would never, ever give him more medications that what he has scheduled, begged him to please trust me . . . when he talked, he reminded me of a confused, argumentative drunk, words slurring, skewed logic that makes perfect sense to him but none at all to me . . .

Saturday night, I decided to try something different. Thorazine didn't seem to be working to address the agitation, to help Bob rest at night, so I asked if he'd be okay to try Ativan. . . it was a confusing, frustration conversation, explaining to him why I wanted to do this, but eventually, he looked at me with exasperation and said something like, "why not, what does anything I say matter any more, anyhow?" Again, heart broken into a million more little pieces, it's now powder . . . my reasoning was that ativan's supposed to be the kinder, gentler approach to the night-time agitation, just supposed to relieve the anxiety to help a patient rest, but not zonk them out like Haldol or Thorazine might. It had worked well with him in the past; maybe we both can finally get more than a half hour of sleep at a time . . .

I gave him one mg at bedtime, knowing that in the past, Ativan was a very mild anti-anxiety drug for Bob, and that I'd hate to try to convince him to take another so soon, if just a 1/2 a mg didn't work. . . almost immediately, as soon as his head hit the pillow, he fell asleep, on his back (which he normally never does), and was deep in slumber. I could barely lift both his legs onto the bed, much less get him onto his side the way he prefers, to get him into a half-comfortable position on my own, he was completely dead weight. I did the best I could without his assistance, but had to leave him on his back, and crawled into bed next to him, wrapping my arm around his waist. Not much sleep that night. . .

The next morning, Bob was in the same position, hadn't moved an inch all night, hadn't even gotten up to try to go to the bathroom. I got up and tried to rouse him, but no avail. He was still breathing, but deeply and completely unresponsive. I looked at the clock, a little before 7. My mind started racing; had the Ativan done this? What have I done? Oh my god oh my god oh my god . . . I ran to find my phone and call the hospice on-call nurse. I got a hold of her, spewed out my story; she said the Ativan would not have done this to Bob—one dose wouldn't last all night; maybe Bob was finally, completely exhausted from the several nights of up and down, up and down, she also gently reminded me the stage Bob is in, that maybe he is nearer the end than we realize . . . she said to keep an eye on him, call back if I feel I need more assistance . . .

I went back to check on him, and once again, tried to get a response from him, as I was worried that because he hadn't gotten up to go to the bathroom all night, we'll really be in for a mess this morning. This time I did get a response, but immediately regretted it. In a groggy, seemingly drug-induced stupor, Bob awoke and clumsily tried rising from the bed, but couldn't hold himself upright and flopped backward, tried to sit up again, and again flopped backward. It was then I realized he was lying in a large pool of liquidy stool. . . he struggled to get upright, while I struggled to keep him lying down, so I could try to clean him up at least somewhat, at the bedside, before we could somehow get him to the shower (which in my heart, I knew wasn't going to happen), given the sheer amount of stool on the bed . . . I sternly instructed Bob to stay in bed, ran to grab my phone and called the hospice nurse back as I ran back to the bedroom, where I found Bob still struggling to sit up. The nurse answered, and I hysterically spilled the story of what was going on; Bob is awake, trying in vain to get up, wants to get up, is covered in diarrhea and I really need someone out here to help now!

The nurse on the other end told me help wouldn't be able to get to us for at least an hour, maybe an hour and a half; the next on-call person doesn't come in till 8:30, she herself is a good hour away from me . . . I started screaming at her, "Are you kidding me?! Bob has been in hospice for FOUR MONTHS and in that time, we've never asked ANYTHING of you people even though you relentlessly bugged us with offers of all kinds of services, but now, when we REALLY need your help, you tell me it'll take a fucking HOUR???!!!" The nurse interrupted me, telling me that they don't have any staff in our area; I interrupted her, crying, "Then what the HELL are we doing in Fairview's hospice program, if you can't service us, especially in a CRISIS???!! Oh my god . . . I need help NOW and you can't give that to me???" she started to say something but I hung up, nearly hysterical.

I suddenly remembered that neighbors down the street from us, husband and wife, are both nurses, he was a hospice nurse for years, recently retired. I had talked to them a few months back and was told, "If you ever need anything, please call . . . " I need help so badly right now, please, please please help us now—I called for Mom upstairs and asked her to run down to their house and see if they're home . . . she left, I continued to try to clean Bob up, again he's fighting everything I was trying to do—I stripped his clothes off, and started wiping from the feet, up, crying and begging Bob to not fight me, to please keep still, to hold on, help is on its way, praying praying, praying that the neighbors are home and can come to help us . . . and all the while, I was really only making the mess worse, but just wanted to clean him up as much as I can, do something to try to keep him occupied, keep him from trying to grab for his walker . . .

Mom returned, said no one answered the door. I almost fainted in frustration . . . I picked up my phone, scrolled down to neighbors who live across from the nurses, handed the phone to Mom and asked her to call them, ask if they have a phone number to call the nurses. Maybe just maybe they didn't hear my mom at the door . . . she got a number, I grabbed the phone and called. A voice answere. "Sharon?" I asked frantically. "Yes," said the voice on the other end. I almost fainted with relief. Again, words tumbled from my mouth as I told her what's going on and asked if they could please help at all. She said they'll be right down. . .

Not five minutes later, Jim and Sharon, the nurse neighbors, arrived and found us in the bedroom. . . I stepped back as they immediately took over; I grabbed supplies as needed, helping as much as I can. I was in awe with their skill and expertise and the gentleness and reverence with which they helped Bob. Between the two of them, they gently, skillfully finished removing his clothes, washed him, turned him from side to side to clean him well . . . at the same time, they removed soiled bed linens, cut his soiled shirt from him (to disrupt him as little as possible), rolled the soiled blankets into a ball and expertly slid new bedding underneath Bob's limp body . . . at once, time was moving through mud and racing by. . . eventually, Bob was thoroughly cleaned, the bedding changed and he wass gently rolled onto his side, fresh blankets wrapped around him . . . he had settled down, and was sleeping soundly. An odd sense of peace has settled in the room.

In the meantime, Mom called Penny and Jim, who were on their way, as well as my sister, Gretchen, who lives nearby and can offer an extra set of strong hands to help . . . Jim and Sharon were gentle but blunt in their assessment of the situation. Bob was very near death . . . they offered me wise advice about his medications. "Pain medication and Ativan are a must at this time. You want Bob to be as comfortable as possible—keep up with his pain medications, and continue giving him Ativan at regular intervals, to keep him calm and resting. Crush the pills, mix with a tiny bit of water, and slowly pour the liquid under his tongue or inside his cheek, so he doesn't choke, it'll absorb transdermally. . ."

Eventually, nearly 10 a.m. (three hours after I first called Fairview hospice on-call), a hospice nurse arrived just as Penny and Jim pull into the driveway (who drove from 2 1/2 hours away. . . what's wrong with that picture, I don't even need to say). I told the nurse everything has been done, by our angels from down the street, that nothing more is needed . . . she gave me some additional advice about Bob's meds, and shortly after arriving, left. Jim and Sharon stayed for a while longer, and then left, saying they'd be back a little later to check on us. I was crying, so grateful for all they'd done, for all they'd shared, for coming to our rescue, for being so kind and respectful to Bob . . .

I thought I could finish this in one last entry, but clearly that isn't going to happen. . . I have to take a break from this. . . finish another time . . .