Mom's Last Days: Chap 3
Morphine, Whiskey, and Hard Breathing
Mary Ellen, our Hospice nurse, had told us if they could remove one phase of dying it would be this last one. It could be really hard, like birth labor, and difficult for the dying person as well as the caretakers. Ends up she was right, but we didn’t know the half of it yet.
It was day nine since Mom had been bed bound and catheterized. Juan and I were caregiving in entirely new terrain and the stress was showing. Juan was gaining weight. I was losing. We were sleep deprived and on edge and had bit each other’s heads off a couple of times.
My brother, John, was visiting on Saturday morning, March 7th, when Mom complained of pain. This was significant because, as I have mentioned, Mom's pain threshold was very high. Mary Ellen had explained that Mom would start feeling pain as her organs shut down so I knew this meant Mom was slipping into the next phase of dying. I grabbed her hand, looked her straight in the eyes and told her I loved the shit out of her then said, We have big guns to take your pain away but they will make you check out. Are you ready for that?
Mom had barely spoken a word all morning, it was too much effort. She looked at me clearly and nodded without hesitation. She was ready. Her eyes and face clearly said Bring it on! I wept as I walked out of her room because until that moment Mom had still been holding onto her life, as had I. I knew her consent meant she was letting go... letting go of watching the chickadees - her favorite pastime - letting go of looking at the sunrises and the mountains, letting go of this whole beautiful world. Juan had been right to reprimand me earlier in the week when I had whined about Mom’s unending stream of words. Mom was going away. I would miss her words. I would miss her presence.
Juan was away that morning working so I called him and he drove home immediately. John spent time alone with Mom while, at Juan’s suggestion, I called my brothers, Fred and Jeff, asking them to say whatever final words they needed to say to Mom because she would soon be unreachable. Fred has Aspergers and just couldn’t change his scheduled call, which was to be the next morning, and he was unable to express his goodbyes even if it had been Sunday. That was just too intimate and scary for him. Jeff, on the other hand, was able to say his peace. Mom and I were in good shape. When I had first seen her that morning, I had mentioned to her that she might be getting closer to climbing one of those ponderosa trees and putting a star on top, and she had nodded yes, that might be the case. So we had spent the morning sharing our feelings in short phrases and nonverbal exchanges.
Juan went into Mom’s room and spent his time with her before administering her first dose of oral morphine, the lowest dose a person could receive. After fifteen minutes Mom let us know with a shake of her head that her pain had not subsided. We waited another fifteen then gave her a second dose. When her pain was still there after an hour I called Hospice and spoke with Chris, the weekend nurse. He asked me to go into Mom’s room and move her hips and see what she did. I moved her and she winced. Chris told me to go back in and do it again, which I did. The second time I touched Mom’s hip her eyes snapped shut and in that instant she became unresponsive. No more sign language. No more head nodding. Nothing.
Chris explained that dementia can cause a body to process drugs differently than expected and it often takes longer to kick in. Juan and I settled into the unsettling task of administering her morphine every four hours. As the day wore on we administered whiskey to ourselves to ease our own pain. It only helped a little...…
It felt strange to suddenly have so little to do on Mom’s behalf. I changed her catheter bag, cleaned her poop, washed her body and put goop on her and shifted her position every two hours so she wouldn’t get bedsores, and raised her bed up and down to give her poor body a break. But she wasn’t eating or drinking nor was she talking and I didn’t know what to do with myself. At first I paced and worried, then finally settled down next to Mom. I tried to read or write, but I put it all down, nothing seemed more important than simply being present. Though Mom no longer responded, Juan and I continued touching her hands and face and speaking softly to her.
Chris had said Mom might last two or three days on morphine, young people could last five, but we should be ready for the longer haul because people of Mom’s generation were far hardier than our generation. Mom was proving that to be true.
Our reality was completely defined by Mom's breath. Whenever we weren’t right beside her we listened to her breathing through the baby monitor. It felt awkward to be out of Mom’s room for short periods of time, attending to our lives while she lay dying, but it was real. As sad and strange as it felt, our lives would continue.
On Tuesday morning, four days into morphine world, Mom’s breathing took on the classic Cheynes-Stokes pattern (named after the two scientists who studied it), which is a repeating pattern of short breaths that stretch into longer breaths then decline into short breaths followed by a period of apnea. The longer breaths are labored, the shorter breaths shallow and quiet. In an ideal world the periods of apnea lengthen until the person never inhales again, leaving this world peacefully.
Melanie, our Hospice social worker, visited Mom Tuesday morning, March 10th. She brought Jackie with her, who had been the social worker at Riverside when Mom was there. Though Mom was mostly checked out, she seemed to respond when Jackie walked in. Melanie and Jackie were sweet and loving as they held Mom’s hands and cooed over her. Their appreciation ran deep. They knew they wouldn’t see Mom alive again so their parting was tearful and lingering.
Mary Ellen visited next. At that point Mom was deep into the Cheynes-Stokes breathing pattern and Mary Ellen felt she might pass in an hour or two. She gently explained what we might expect and who would come help us once Mom passed, reassuring us Hospice would make that transition as easy as possible. Then Mary Ellen said her heartfelt goodbyes to Mom.
After Mary Ellen left I walked into Mom’s room and her eyes were open for the first time in several days. She turned to me and smiled her big mother smile as she reached out to grab my hand. Her face was beaming and for that brief bit of time Mom shared her essence with me; she was who I had always known her to be. I knelt down real close and smiled into her eyes while telling her I loved her and we held on and looked at each other for that last beautiful, ephemeral moment. From that point on, Mom never opened her eyes again.
Mary Ellen, our Hospice nurse, had told us if they could remove one phase of dying it would be this last one. It could be really hard, like birth labor, and difficult for the dying person as well as the caretakers. Ends up she was right, but we didn’t know the half of it yet.
It was day nine since Mom had been bed bound and catheterized. Juan and I were caregiving in entirely new terrain and the stress was showing. Juan was gaining weight. I was losing. We were sleep deprived and on edge and had bit each other’s heads off a couple of times.
My brother, John, was visiting on Saturday morning, March 7th, when Mom complained of pain. This was significant because, as I have mentioned, Mom's pain threshold was very high. Mary Ellen had explained that Mom would start feeling pain as her organs shut down so I knew this meant Mom was slipping into the next phase of dying. I grabbed her hand, looked her straight in the eyes and told her I loved the shit out of her then said, We have big guns to take your pain away but they will make you check out. Are you ready for that?
Mom had barely spoken a word all morning, it was too much effort. She looked at me clearly and nodded without hesitation. She was ready. Her eyes and face clearly said Bring it on! I wept as I walked out of her room because until that moment Mom had still been holding onto her life, as had I. I knew her consent meant she was letting go... letting go of watching the chickadees - her favorite pastime - letting go of looking at the sunrises and the mountains, letting go of this whole beautiful world. Juan had been right to reprimand me earlier in the week when I had whined about Mom’s unending stream of words. Mom was going away. I would miss her words. I would miss her presence.
Juan was away that morning working so I called him and he drove home immediately. John spent time alone with Mom while, at Juan’s suggestion, I called my brothers, Fred and Jeff, asking them to say whatever final words they needed to say to Mom because she would soon be unreachable. Fred has Aspergers and just couldn’t change his scheduled call, which was to be the next morning, and he was unable to express his goodbyes even if it had been Sunday. That was just too intimate and scary for him. Jeff, on the other hand, was able to say his peace. Mom and I were in good shape. When I had first seen her that morning, I had mentioned to her that she might be getting closer to climbing one of those ponderosa trees and putting a star on top, and she had nodded yes, that might be the case. So we had spent the morning sharing our feelings in short phrases and nonverbal exchanges.
Juan went into Mom’s room and spent his time with her before administering her first dose of oral morphine, the lowest dose a person could receive. After fifteen minutes Mom let us know with a shake of her head that her pain had not subsided. We waited another fifteen then gave her a second dose. When her pain was still there after an hour I called Hospice and spoke with Chris, the weekend nurse. He asked me to go into Mom’s room and move her hips and see what she did. I moved her and she winced. Chris told me to go back in and do it again, which I did. The second time I touched Mom’s hip her eyes snapped shut and in that instant she became unresponsive. No more sign language. No more head nodding. Nothing.
Chris explained that dementia can cause a body to process drugs differently than expected and it often takes longer to kick in. Juan and I settled into the unsettling task of administering her morphine every four hours. As the day wore on we administered whiskey to ourselves to ease our own pain. It only helped a little...…
It felt strange to suddenly have so little to do on Mom’s behalf. I changed her catheter bag, cleaned her poop, washed her body and put goop on her and shifted her position every two hours so she wouldn’t get bedsores, and raised her bed up and down to give her poor body a break. But she wasn’t eating or drinking nor was she talking and I didn’t know what to do with myself. At first I paced and worried, then finally settled down next to Mom. I tried to read or write, but I put it all down, nothing seemed more important than simply being present. Though Mom no longer responded, Juan and I continued touching her hands and face and speaking softly to her.
Chris had said Mom might last two or three days on morphine, young people could last five, but we should be ready for the longer haul because people of Mom’s generation were far hardier than our generation. Mom was proving that to be true.
Our reality was completely defined by Mom's breath. Whenever we weren’t right beside her we listened to her breathing through the baby monitor. It felt awkward to be out of Mom’s room for short periods of time, attending to our lives while she lay dying, but it was real. As sad and strange as it felt, our lives would continue.
On Tuesday morning, four days into morphine world, Mom’s breathing took on the classic Cheynes-Stokes pattern (named after the two scientists who studied it), which is a repeating pattern of short breaths that stretch into longer breaths then decline into short breaths followed by a period of apnea. The longer breaths are labored, the shorter breaths shallow and quiet. In an ideal world the periods of apnea lengthen until the person never inhales again, leaving this world peacefully.
Melanie, our Hospice social worker, visited Mom Tuesday morning, March 10th. She brought Jackie with her, who had been the social worker at Riverside when Mom was there. Though Mom was mostly checked out, she seemed to respond when Jackie walked in. Melanie and Jackie were sweet and loving as they held Mom’s hands and cooed over her. Their appreciation ran deep. They knew they wouldn’t see Mom alive again so their parting was tearful and lingering.
Mary Ellen visited next. At that point Mom was deep into the Cheynes-Stokes breathing pattern and Mary Ellen felt she might pass in an hour or two. She gently explained what we might expect and who would come help us once Mom passed, reassuring us Hospice would make that transition as easy as possible. Then Mary Ellen said her heartfelt goodbyes to Mom.
After Mary Ellen left I walked into Mom’s room and her eyes were open for the first time in several days. She turned to me and smiled her big mother smile as she reached out to grab my hand. Her face was beaming and for that brief bit of time Mom shared her essence with me; she was who I had always known her to be. I knelt down real close and smiled into her eyes while telling her I loved her and we held on and looked at each other for that last beautiful, ephemeral moment. From that point on, Mom never opened her eyes again.
Mom didn’t die within an hour or even two. Instead she kicked into loud, labored breaths every three seconds, so labored that her diaphragm depressed visibly with each inhale. Her mouth was open, her head tilted back, eyes half closed, heart rate racing at 100 to 120 beats per minute. It was horrible to listen to. Was this the death labor that Mary Ellen had referred to?
Mom’s hard breathing continued into the night. We tried everything to stop it; Juan upped her morphine, which freaked me out - what was I afraid of? That we'd kill her? We adjusted her bed, turned her slightly, and finally I crawled into bed with her. Juan had just given Mom another bumped-up dose of morphine so she and I passed out together for a few peaceful hours, but then her hard breathing started up again. I was frantic. I begged Mom to Just give it up. Please! I even gently pushed her lower jaw closed to ease her breathing but it only worked briefly.
I wailed at Juan that we had to do something! This was not right. I had failed to keep my mother comfortable. I felt horrible. Finally in the wee hours of the morning I called Hospice but was so riled up that Juan took the phone from me and spoke with Joe, the on-call nurse.
Joe drove the hour-long drive to Seeley Lake to help us. He was like an angel coming in the night. I was a wreck. Joe knew it at first glance and before administering anything to Mom he ministered to me. He just stood beside Mom, her hard breathing cutting through his words, and talked to me while I stood on the other side of her bed shaking. Joe told me it had taken him four years of nursing schools, hundreds of patients, and finally caring for his grandmother to get comfortable dealing with big guns like morphine, that Juan and I were dealing with blind, no prior experience, and it was my mother dying. I wept as Joe spoke. Without my telling him anything he validated all my feelings and assured me that we were doing a good job.
Mom’s hard breathing continued into the night. We tried everything to stop it; Juan upped her morphine, which freaked me out - what was I afraid of? That we'd kill her? We adjusted her bed, turned her slightly, and finally I crawled into bed with her. Juan had just given Mom another bumped-up dose of morphine so she and I passed out together for a few peaceful hours, but then her hard breathing started up again. I was frantic. I begged Mom to Just give it up. Please! I even gently pushed her lower jaw closed to ease her breathing but it only worked briefly.
I wailed at Juan that we had to do something! This was not right. I had failed to keep my mother comfortable. I felt horrible. Finally in the wee hours of the morning I called Hospice but was so riled up that Juan took the phone from me and spoke with Joe, the on-call nurse.
Joe drove the hour-long drive to Seeley Lake to help us. He was like an angel coming in the night. I was a wreck. Joe knew it at first glance and before administering anything to Mom he ministered to me. He just stood beside Mom, her hard breathing cutting through his words, and talked to me while I stood on the other side of her bed shaking. Joe told me it had taken him four years of nursing schools, hundreds of patients, and finally caring for his grandmother to get comfortable dealing with big guns like morphine, that Juan and I were dealing with blind, no prior experience, and it was my mother dying. I wept as Joe spoke. Without my telling him anything he validated all my feelings and assured me that we were doing a good job.
When I expressed my confusion about how Mom had seemed so close to dying and my distress about her sudden shift to hard breathing, Joe quietly said Dying is not a straight line. It’s hard to predict how it will go. He looked at Mom’s face and assured me that although she sounded horrible, she was not in distress, she did not have furrows on her brow or the bridge of her nose, her jaw was not clenched. She was just deep into the process of leaving her body.
Then Joe gave Mom medicine that Mary Ellen had suggested we have on hand. It dried up her saliva so it wouldn’t build up in her throat. I beat myself up for not having it on hand but Mom’s breathing remained labored even after the medicine, so I had to let that go. As Joe said, Juan and I were doing an awesome job given how uncharted the terrain was and our inexperience with death. Joe also bumped up Mom’s morphine even more, which made her really check out. Her body looked like a machine threshing its way through a field to the end of the row, her spirit just hanging on by a fiber.
As the sun rose on March 11th, Joe, Juan, and I talked over coffee. Joe suggested that Mom might be waiting to die until we were out of the room, which was what Mary Ellen and Melanie had also suggested. Juan and I had been taking shifts with Mom for days, barely sleeping, almost always by her side. After Joe drove back to town I wrenched myself from Mom’s side and forced myself to take some walks and give her space. But none of it felt right to me.
Joe’s not a straight line comment stuck with me. When I looked at Mom I was ravaged by the way in which she was going. I had done everything in my power to button up all the loose ends and gather the stray pieces together for just this occasion hoping her passage would be easy, but seeing her mouth splayed open, her eyes blank at half mast, her heart rate still over 100, and her sternum deflecting every three seconds hour after hour was more than I could bear. Her dying could not be neatened.
Justine, the Hospice harpist, called asking if we wanted her to play to Mom. I told Justine she was welcome to come but Mom had not been able to relate to her music when Justine had played a month prior. Mom wanted to hear something familiar. Then Justine explained the science behind what she did - music thanatology. If she were to play something familiar to Mom it would keep Mom in her body. Justine’s job was to watch Mom’s body language and play elemental sounds that would help her leave her body. At that I began to weep uncontrollably. Mom leaving her body. It was hitting me now. I told Justine to come out then I stood in the shower and sobbed.
Justine felt like a little elfin spirit come to ease Mom’s passing and ours. Juan and I crawled into our bed with the baby monitor so we could listen to her music while we rested. Mom’s breath softened with Justine’s first harp tone. It was subtle but noticeable. But as Justine continued Mom’s breathing cut through each tone as if asserting her final presence. The sheer power of life made its impression upon me.
Mom was still hanging on by mid day when my brother, Jeff, called saying that the minister from Mom’s hometown church had suggested Mom might be hanging on because she had not yet heard from Fred. So I called Fred and told him we needed his help. Would he tell Mom he loved her and assure her that he would be ok? Fred grunted awkwardly but agreed. He knew Mom had been at it for almost five days now. I held the phone to Mom's ear and after Fred said he'd be ok and that he loved her Mom's heart rate dropped ten points. That was about 3pm.
I took a long walk while Juan sat with Mom. Then I cooked dinner, which was a switch, since Juan had been force-feeding me for days because I just kept dropping pounds. As Juan and I ate with the baby monitor between us, Juan suddenly said Her breathing just changed.
We left our meal and walked into Mom’s room. Her jaw was jutting forward with each inhale, like she was short of breath. There was a distinct pattern and rhythm to it. Once again, I called Hospice asking if Mom might be in distress and was there anything we needed to do. Terry, the on-call Hospice nurse, asked if Mom looked like a fish gulping for air, which was exactly how she looked. Terry then assured us Mom’s breathing was classic and that she was not in distress. She was very close to the end.
Contrary to what I had imagined I’d do in Mom’s last minutes, I did not touch her because I was afraid my touch would hold her back. It was time for her to go and I didn’t want to do anything that would hamper her efforts. Instead, I charted each gulp and the spaces in between on a small piece of paper - it was my way of steadying myself in the face of Mom's last moments on earth. As the spaces between her gulps for air grew longer, Juan and I whispered our good wishes to Mom on her journey and then were silent beside her.
Mom’s pauses grew longer and her breathing quieter until she finally stopped altogether. She was done. It was over. She had birthed herself out of this life. Juan and I sat quietly taking it all in.
It was 8:08pm.
When we were ready we called Terry at Hospice. She came an hour later and took care of Mom’s catheter and helped me dress her. For the past couple weeks I had been thinking about what Mom would wear when she was cremated. She had a lovely dress but she really hated wearing dresses so I opted to put Mom in her most comfortable clothes, black jersey pants, a rose-colored jersey shirt, and one of her favorite wool sweater with roses on it that she had fretted for months about wanting to fix its ravelling cuffs. I figured now she wouldn’t have to worry about that. The week Mom was bed bound she had wanted her black sneakers which she had not worn or referred to since moving in with us, so I considered that her guidance for what shoes she preferred to be wearing in the end.
Terry and I rolled Mom back and forth gently pulling her clothes on. Mom’s back was really warm to the touch which startled me. Terry explained that all of Mom’s blood had settled there. She would eventually cool down.
Terry had called Cremation of the Rockies before driving to Seeley and they arrived a half hour later. Together they really made these last transitions seamless. We had finished dressing Mom so they rolled a gurney into her room and very respectfully slipped Mom into a dark blue corduroy bag. Before zipping the bag shut they rolled her into the living room so we could see her one last time.
By then, Juan and I weren’t sobbing, we were laughing awkwardly. Laughter had been Mom's and our sanity for the past eighteen months and it was what came now. I looked at Mom and was struck by her eyes. They had changed from turquoise blue to dark navy. I almost didn't recognize her gaze. Juan and I said our goodbyes to Mom’s body but she was clearly no longer there.
After everyone had left Juan and I nipped a bit more whiskey and crawled into bed. No baby monitor, no loud distressing breathing, no need to check on Mom. The house felt empty and sad. We curled up against each other and fell into deep sleep.