Posts Tagged ‘hospice nurse’

Moving into the Mystery

December 28, 2011

“Pittsburg,” is the only part of what he says that I can make out. He sits up, trying to muster the strength to do what I know he cannot: move from the bed to the commode next to it. He has asked a question that I cannot decipher, except for the word “Pittsburg.” I can think of no connection to Pittsburg, no conversation we’ve had about the city—nothing. Either I, in my weariness, am just not putting together something obvious or he has drifted farther away cognitively. I consider the possibility of the former but suspect it’s the latter.

I have given him his morphine and I eventually get him to lie back down, but he sits up again almost immediately. I tell myself that if I could get a bit of Adavan in him, he might be less restless, but he won’t take the Adavan. I call Antonio, thinking that he may be more successful at it than me, but before Antonio can get to the house (a thirty-five minute drive), Howard is down and has taken it. I call Antonio’s cell to tell him that he needn’t come, but he insists on coming anyway.

While Antonio is at the house, Kristen, the hospice angel of a nurse who had helped get him back into bed the previous night (Christmas night), calls. She had promised to follow up and is fulfilling that promise. She manages to convince me that we can get a hospital bed into the room without removing the queen-sized bed and her description of how we’ll manage it makes sense to me. Howard needs the restraint of the sidebars and I need the ability to move the bed up and down.

It is a stroke of luck that Antonio is with me. Kristen has ordered the bed and it arrives in less than an hour and a half. Kristen continues to behave as if she has angel wings. She comes to the house and the three of us manage to move Howard from the guest room bed to the hospital bed—no small thing because even though he has lost a great deal of weight over the past month, he is still somewhere around two hundred pounds . . . of dead weight.

Howard is semi-comatose and cannot help at all in this process. That’s the downside. The upside is that he also cannot fight against it. He has refused a hospital bed up to this point because it represents death to him. But it can no longer be avoided and he is, indeed, close to death.

In a moment of overwhelm, I call my sister Maureen, who has offered to drive out from Illinois to help with Howard’s care, and tell her, “I give up. Come on out.” But after we have Howard settled, I think, I can do this. Nevertheless, I’m glad she will be on her way. I’m not sure she will actually make it before he dies, but I will be relieved to have her there with me.

And now the waiting begins. The next couple of days are a blur. I consider what should be done before Howard dies and call his sister Ann and his three sons, not simply to alert them to the fact that he is close to death, but to give them a chance to say whatever they want to say to him. He is beyond words now, so he won’t be able to talk to them, but I can hold the telephone up to his ear and they can talk to him.

They all want to do this.

With each, I hold the telephone to Howard’s ear and tell him that he need do nothing, just listen. I’m fairly certain that he can still hear, even if he cannot talk, and I want to give him permission to just listen and not struggle to even try to get words out. But he does try to get words out with each of them. He’s unsuccessful at this except with his oldest son, Jim.

Jim makes his peace with his father and it brings me to tears as I hear what he says over the extension. Then, quite miraculously, really, Howard gathers the strength to say what Jim and I later agree is, “Okay.”

Once his closest family have had a chance to speak to him, there is really nothing more for me to do but try to administer his medication and wait. He hasn’t lost the ability to swallow yet, so I am able to give him his liquid medication. I do my best to make him comfortable and wait. I’m restless.

I talk to Antonio on the 28th and he tells me he’s coming over to do ceremony. He and his wife, Helena, come. I welcome their calm strength. Even though I’m a strong woman myself, I can stand outside myself just long enough to realize that the one leg I always have in the other realms, as the shaman I am, has actually pulled more of me into those realms than the part of me that is on this side. I’m unbalanced, too much in an altered state and too little grounded. Ceremony is actually the best thing for me, whether or not it is something Howard would want if he were lucid enough to state his preferences.

The death ceremony we do is so magical and so what is needed that I’m less restless afterwards, more at peace. [The details of this ceremony can be found in my March 28, 2011 post, titled “Death Ceremony.”]

No more than a couple of hours after they leave, my sister arrives. I make dinner for us and, not long after we sit down to eat, I hear something coming from Howard that I’ve never heard before—a gurgling, gasping frustration. I tear into his room with Maureen on my heels. We get there just in time for me to hold his body up as black ooze issues from his mouth. One eye stares at me and the other has rolled back. He has entered a coma.

Maureen and I clean him up, which takes no small effort. The sheets must be changed, all of his clothes must be swapped out, and his adult diaper must be changed. Mo (the diminutive I’ve long used instead of my sister’s full first name, Maureen) has just arrived to be swept into the most difficult kind of help to provide. I had told her, before she came, that she would have to be tough to manage this. She hasn’t even had dinner before she’s put to the test.

We have to cut off some of his clothes because the combined strength of the two of us is not enough to effectively move him. And I’m not about to call hospice. This is sacred duty; I need to perform it and Mo is willing to join me in it. His clothing is insignificant at this point because he won’t be wearing it again and getting him clean and comfortable is what is needed.

Mo and I struggle so much to get the job done. We take sides on either side of the hospital bed and try to manhandle the sheets and clothes without doing harm to my poor dying husband. Eventually, I look up at her, start to laugh, and tell her we’re like the Keystone Cops. We’re clumsy and incompetent, moving about with too little purpose and using too much effort, but we manage.

When we’ve finished and return to the table, Gretchen Minney calls. She’s just returned from spending time with family out of town and I can hear in her voice that she is jet lagged and weary. She wants to know how Howard is doing and when I tell her, she insists on coming over, even though she’s barely put doen her luggage.

Dinner shifts, becoming almost a celebration. It’s an odd celebration, but it does seem like one. I’ve opened a bottle of champagne. I’ve made a good meal. Gretchen, Mo, and I seem aligned in knowing that Howard is about to break the bonds of human form, step out of his body, and step into the mystery. And that is a very good thing.

Finally, Gretchen leaves and I settle Mo in my bed. The only other option is the bed in the guest room and I’m the only person who should be in that room on death watch. She retires, as do I. I lie awake for a time, listening to Howard’s death rattle. The hospice nurse had prescribed drops that sometime eliminate the sound, which she has told me can be quite disconcerting. The drops have worked until now. And I now understand what she means. I’m too weary and too relieved that the end is near for a mere death rattle to rattle me much. I fall to sleep and sleep like the dead until I awake with a start at around 1:35 a.m.

I look at the clock and realize I’ve missed giving Howard his morphine and Adavan on schedule. Then I realize that the death rattle is gone. I leap from bed, go over to him, and can hear that he is still breathing—softly, gently. I give him a small dose of morphine, thinking that it is probably unnecessary, and I pull up a chair and sit next to him, rooting under his covers to take his hand. It won’t be long now. His breaths are so infrequent that I think he is gone more than once, only to hear him take another breath. His sleep apnea over the preceding several years has, thankfully, prepared me well, and I am not jarred by the sporadic breathing.

I have a headache and after some minutes, I get up to take something for it. The combination of stress and champagne have left me with a head that doesn’t quite feel like my own and it is distracting. I want to be clearly focused.

When I return to the room and wait for the next breath, there isn’t one. He’s gone. I look at the clock and see that it is ten minutes of two and I’m startled by the knowing that he’d awakened me so I wouldn’t miss this moment. He knew I wanted to be there and he woke me up so I could be. What a blessing! I thank him, even though I know he’s not actually there any longer. In fact, he has mostly been gone for days. And the death ceremony had helped the rest of him go.

I think about something he’d said, sometime over the last month. “I don’t think we told each other we love each other enough.”

He was probably right, but we had told one another often enough and we’d shown one another in many ways. And he’d given me this last gift of love—waking me so I wouldn’t miss his death. What is enough when it comes to love? There is never enough when it comes to feeling the love, murmuring the words, acting in love. But I’d come to the knowing, years earlier, that any instant of love is not lost, but reverberates on in the universe—onward, outward, past the farthest reaches.

And I feel it, right then.

And I continue to feel it.

Copyright 2011 by Melanie Mulhall

Christmas

December 26, 2011

I was walking on eggshells. I’d been sworn at enough the previous night to make me more than a little careful around my husband. He was dying—days from it at most, as far as I could tell—and he wasn’t himself. But I was weary of being the bad guy. While he had been the quintessential noncompliant patient for some time, I had been the annoying person trying to persuade him to comply, arguing against his attempts at doing things he could no longer do—things that would require me to call for help. I was the annoying person who knew how close to death he was and wouldn’t pretend it wasn’t so. I was the annoying person who was seeing him at his most vulnerable on a daily basis.

My tactic of the day was to walk on eggshells with him. Unfortunately, he was still lucid enough to know that something was off between us. He wanted to know what was wrong. I demurred. He conjectured that I was upset because he wasn’t dead yet.

That was downright cruel. I knew he was close to death and I wanted the release of death for him, but I didn’t feel impatient about it. There had been times over the nearly four years since he’d been fighting the metastasized cancer that I had certainly wondered when it would be over and fantasized it being over. But as his death drew near, I’d felt the sacred quality of it and felt honored to be witness to it. I wanted the release for him, but felt in no hurry for me.

I didn’t feel honored to be on the receiving end of swearing and cruelty, though.

In tears, I told him I couldn’t comply with his wishes to leave the door to his room closed, now that the commode was in it. He looked at me as if completely confused and said, “I don’t understand you at all.” And in that moment, he meant it. In that same moment, I considered the possibility that this statement might be true of the entire relationship between us.

He said he wasn’t hungry, but changed his mind and decided he wanted scrambled eggs. I made the eggs. He pulled himself up in the bed by grabbing onto the covers and ate a bite or two. Then he sat there for a long time, as if he’d forgotten he had a plate of eggs in his lap.

I said, “Your eggs are getting cold, Dear.”

He replied, “Shut the !&%$ up.”

I left the room in tears.

The hospice nurse had asked what we usually did on Christmas and suggested that I follow our traditions, to the extent possible. Not much of what we usually did was actually possible, but it was Christmas Eve and I decided to make a grocery run to buy some of the things we usually had on Christmas morning as we opened gifts: shrimp, caviar, smoked salmon. Against all reason, I also bought a standing rib roast, which I found in the reduced section. We’d often had standing rib roast for Christmas dinner and even though I knew he would not want it—any more than he would want the shrimp, caviar, or smoked salmon—I decided to buy it. At least he would be able to see that I was treating Christmas as I usually did and wasn’t exactly on death watch.

He was quiet that evening. I climbed into bed with him for a bit and lay there, allowing my mind to wander to our life together. Here we were at the end of it. And it was, for the moment, peaceful. I kissed him and told him I loved him when I left the room. And he said, “I love you, Dearie.” That erased any hurt I had sitting in my gut from earlier in the day.

The next morning I came into his room and said (with all the Christmas cheer I could muster), “You made it to Christmas.”

“When was the last time I did that,” he replied.

I could have taken it as just another bit of wry humor from him, but he had said it wistfully and a few days earlier, he had commented that he felt as if he’d been through all of this—this process of dying, in this body—before. I had suggested that he was describing déjà vu and he allowed that it might just be that. I’d told him I had a couple of theories about déjà vu and asked if he wanted to hear them. Surprisingly, he did.

I suggested that he might have planned all of this before he came into this body and that he was experiencing what he had planned out. An alternative theory was that he was leaving his body some of the time and coming back in (something I knew, in fact, was happening), so he was sometimes watching himself from outside his body.

I might have proposed other theories—I had them—but left it at that. He had little to say but seemed to be considering what I’d said.

I brought out our usual Christmas fare, though he had little interest in eating any of it. He seemed to like the smoked salmon more than anything else, but that only meant he had three bites of it to the one nibble of shrimp and no nibbles of the caviar. Nothing had tasted right to him for months, and over the past week he had eaten and drunk so little, I knew he was edging closer and closer to death.

I brought the few gifts to be unwrapped—all for me because everyone finally understood that he wouldn’t be around to use anything they would give—and opened them on the bed, commenting on each. He could barely stay awake for it, but he made an attempt and managed it, just barely.

He slept most of the rest of the day, though his sleeping was interrupted at least once by an attempt on his part to leave the bed to make his way down the hall to the bathroom. I could not let him even try at this point. I told him that if he needed to go to the bathroom, he had to use the commode. He objected. I pressed. He objected. I finally told him that if he made an attempt to get to the hallway bathroom, I would pick up the phone and call hospice or go next door to ask for help because I knew he would not be able to make it there and back and I was smart enough to know that I could not restrain him. I knew he was royally pissed about this and told him that I couldn’t let him hurt himself, that I was not his enemy. He insisted that I was his enemy and I told him that he would rethink this position at some point. What I didn’t say was that he might rethink it once he was on the other side and had some perspective.

His body was fading and his mind was fading with it. One moment he was sweet and peaceful; another he was irrational, agitated, and angry. He seemed to be losing sight and hearing, too, and I was unable to tell how much of his behavior had to do with what must be the alarming fading of these senses and how much had to do with the malfunctioning of his mind. But I did know that his mind was abandoning him rapidly.

Christmas night he struggled to the commode and was on it for an hour, then two hours more a little later. He now had no energy to lift himself from it and slide back onto the bed. I attempted to help him, against his wishes, and failed. I knew I couldn’t leave him there all night. I had not option but to call hospice. He sat on the commode babbling, “Blueberries, blueberries, blueberries.” I wondered if his mind had left him completely or if he was trying to avoid swearing. It was frightening to see this brilliant, virile man in this condition—even though I’d been present during the entire downward slide.

Kristen, the hospice angel of a nurse on call on Christmas night, came from the other end of the metro area. Together, we managed to get him settled.

He was not only on morphine at this point, he was on Adavan, a drug meant to reduce anxiety and/or depression, often prescribed to people who are at the end stages of dying. I had come to understand, both from my online research and from my conversations with his hospice nurse, that patients who are dying are often restless and disoriented. Adavan helped with that.

But what I was experiencing with my husband had been confusing over the past week or so. According to what I’d read, there was a pre-active phase of dying and an active phase of dying. The former could last a couple of weeks, while the latter tended to last three days or so. These were, of course, averages. I’d seen his lower legs and feet swollen (pre-active phase) and blue (active phase) one day, then fine the next. It was crazy making. He had the restlessness and confusion of the pre-active phase, along with prolonged periods of sleep, overall withdrawal, coolness of skin, decreased intake of food and liquids, and comments that suggested to me he was trying to resolve anything unresolved between us. But he had been lucid most of the time and had not shown other signs of being in the active dying phase . . . for the most part. He was becoming incoherent, was losing his physical senses, and was—the shaman in me saw—mostly gone.

Sometime earlier, I’d intuited that he would be gone by Christmas. It hadn’t occurred to me that his essential nature would be mostly gone by then, but his body would still be with me.

Yet, I knew time was very short.

Copyright 2011 by Melanie Mulhall

Drama Everywhere

December 25, 2011

“I wonder why I’m sleeping so much,” he said, as if he truly didn’t understand it.

I reply, “Your body is shutting down. So you sleep. Your metabolism has changed.”

Of course, the fact that he was on a low dose of morphine administered more than once a day had something to do with it, too, but I didn’t point that out. I had said, “Your body is shutting down,” and not, “You’re dying.” We both knew he was dying. I’d been more willing to say it than him, but I didn’t need to say it again.

His hospice nurse thought that this comment was meant to prepare me for his death. I almost snorted at that. I’d been prepared for his death for some time; he hadn’t been. He understood he was dying at this point, but he didn’t seem to understand that he might not just go from being lucid and vital to dying in an instant, that, instead, his body might shut down slowly.

On December 23rd, he asked what day it was and I said, “It’s Mom’s—my Mom’s—birthday, December 23rd. My mother had been gone since 1995, but I always remembered her birthday.

I was taken aback when he replied, “Do you want me to die on your mother’s birthday?”

“Well, that’s up to you,” I said. “And I think of death as more like graduation.”

And it was time for him to graduate. He was fading. He was now attempting to use the commode instead of fighting his way to the bathroom, but whatever in him still held on to some sense of personal dignity inhibited him. He was having trouble managing the pull-ups and I’d had to change the sheets in between hospice visits. He couldn’t bathe himself but wouldn’t let anyone else bathe him, either. The previous day, I had managed to get his bed in order and had given him some clean clothes, but after undressing and struggling with the pull-ups, he’d accidentally put the dirty clothes back on. He had spent his limited supply of energy and had just gone back to sleep in his dirty clothes.

Later, he awoke and said, “I think I’ll take a shower today.”

I’d thought that we were past that. There was no way he could make the short trip from the guest bedroom, down the hall, into the master bedroom, and into the shower. He barely had enough strength to sit up. Yet he believed he could do it with my help. My help? When he went down—and he would surely go down—he would go down like an ancient tree and would take me with him.

I reminded him of the debacle some days earlier. He’d insisted on taking a shower and was going to struggle his way to it. I’d at least convinced him to wait for the hospice nurse to help him. I’d actually thought she would talk him out of it, but he was determined and she was willing to stick with him until he demonstrated to himself that he couldn’t manage it. His oxygen tank in tow, he’d managed to make his way to the master bath. It had probably taken forty-five minutes to an hour to get that far. But he couldn’t actually get into the shower. He sat, defeated, on the toilet and allowed the nurse to at least wash his torso and legs. Then it was a very long struggle back to the bed.

But when I mentioned that event, his reply was, “I did shower.” I reminded him of what had transpired and his faulty cognitive function kicked into high gear and brought back enough of the affair for him to recall that he hadn’t actually gotten into the shower that day. “She kept saying, ‘You don’t have to do this,’” he said, “so I eventually let her do it.”

Let her wash him, he meant—something he could scarce imagine.

He slept most of the day on the 23rd. I had a hair appointment I badly needed to keep, but I thought I would have to cancel it because I could not leave Howard alone at all at this point. But Cindy Morris made keeping my appointment possible. She agreed to come and keep an eye on Howard. I asked her to just sit in the dining room, facing the closed door to the guest room, and stop Howard if he tried to leave the room. He couldn’t make it the bathroom any longer but frequently forgot that fact and would attempt to get up to make the trip. He needed to be protected from himself and she had the grit to agree to be his protector, even if for only an hour and a half or so. It was hugely courageous and an equally huge gift to me.

When I got back home, I heated up some homemade soup for the two of us. She’d brought some vegetables and a small dessert to go with it. We were eating and chatting when I realized, with a start, that I hadn’t given Howard his morphine on schedule. I left the table and went into his room. Unfortunately, he had made his way from the bed to the commode and barked at me when I opened the door. He might be dying, but he still wanted complete privacy when it came to the commode. I backed up and went back to the table.

We had the monitor on the table with us and could hear him straining and in discomfort. Was he trying to get back to bed? Was he struggling with the pull-ups? I couldn’t quite decipher what he was doing from the sound. After a time, I went back to the room. He was still on the commode. This time he didn’t just bark, he swore at me. In fact, we could hear the “God damn you, Melanie,” over the monitor as he continued to swear at me after I left him alone and was back at the table. More time elapsed. I was worried about him. This time I knocked. More swearing.

Cindy was a trooper. She just took it in stride. I was concerned about Howard, and I made every attempt not to take his swearing at me personally. He was dying. He was losing cognitive functioning and what cognitive ability he had left was very annoyed by his failing body and the fact that he couldn’t hide the fact that his body was failing.

Once dinner was over and we’d chatted for a time—our talk punctuated by Howard’s swearing, as heard over the monitor—she’d had enough and was ready to leave. But just as she was getting ready to go, an ambulance came down the street in front of my house, lights flashing. It swung off E. 3rd and onto Bellaire, the cul-de-sac my house sat next to. More emergency vehicles followed. They all pulled up to a house in the middle of the street. While we didn’t know the couple living in the house, we’d seen the man who lived there many times, attending to his yard and sitting in a chair, just inside his garage, watching the neighborhood.

Cindy stayed. We looked out the back door and talked about what we’d done as children when emergency trucks pulled into the neighborhood. She’d grown up in the Bronx; I’d grown up in small towns in the Midwest. But it seems that the response was universal, at least when we were growing up. We would stop whatever we were doing and either peek out our windows or go outdoors for a good view of the activity. Life drama, right in front of us, had been more compelling that eating, sleeping, television, work, or anything else. Everyone we knew when we were growing up came to a stop when emergency vehicles were anywhere nearby. The girl from the Bronx and the girl from the Midwest still did.

Someone was brought out on a stretcher, but it was difficult to tell for sure if it was a man or a woman. Someone was ill or injured bad enough for an ambulance to have been called. Could someone be dying across the street? What were the chances of two people on the same block dying—or close to it—at the same time? Everything in my life had become a bit surrealistic, but this sent my mind sliding off the edge.

And then I had a moment of complete clarity. I had been so focused on my little patch of earth at 1093 E. 3rd Ave. and the drama in my own home for so long, I’d lost perspective, lost the understanding that drama was happening elsewhere—often nearby—all the time. It hit me in the gut, moved up to my brain, then settled in my heart: At any given time, there are people within a block of me enduring one drama or another. Someone might be dying. Another might be grieving a death. A third might be suffering a serious illness or suffering through a divorce. Someone else might be in the deep well of chronic depression. One of these people might share their suffering with me but most wouldn’t. I didn’t even know most of the people who lived nearby. But I understood, in one flash that moved through my system like an electrical charge and settled in my heart, that there was now and always would be suffering around me.

I was changed by it. There was something utterly tragic about it and, at the same time, there was something comforting about the fact that others were sharing this aspect of the human condition. I was appalled by the fact that any part of the knowing gave me comfort and was stricken with sadness by the thought that there would always be others nearby suffering. My heart constricted in pain. And then it opened a little wider than it had been before—to take it all in and make a home for it.

Copyright 2011 by Melanie Mulhall