But I do and will want to remember.
I have this whole story developing. It started back in 2007, when he showed me the new property they'd bought in anticipating of building their real retirement home. Just before I went to Paris for grad school.
But I can't seem to write it fast enough for all the thoughts and feelings that come up. So, I guess there will be tandem tellings.
I flew out on March 30. I had just started fighting a cold. I landed and a family friend picked me up at the airport and brought me back to her house. I was so frustrated to have come all the way, with time tick tick tick draining away, and I couldn't even go to my parents' house. I was contagious. Last thing I needed was to get germs into the house.
On March 31 the doctor said it was a sinus infection and gave me meds. I cried in her office. She was actually a nurse practitioner or something who worked with one of the doctors that had treated my father. I cried because I desperately wanted to be with my family. I cried because I had a bad fever. She told me it wouldn't affect my dad (which now seems logical - how would a man dying of cancer get a sinus infection? As if it would somehow speed things up or make them worse. Or somehow, my germs would overpower the chemo, the radiation treatment, and all the drugs). And likely I wouldn't affect my mom and sister because I wasn't contagious. I could just wear a mask and wash my hands. But, she said, clearly I needed to be with them and that was much more important than germs.
On April 1 it was 24 hours and I went to the house. I quit smoking this day.
It was such a relief to be there. I wore the mask the first two days because we all thought that his immune system was so weak that he could somehow catch a sinus infection - and how disastrous that would be. Funny to look back on that now. As if we were still in fighting mode. I guess we were.
Dad was still in his bed. My sister didn't go back to Minneapolis like she had planned. In fact, for the next two weeks we really didn't leave the house at all. My sister ran to town one day. My mother another day.
It was gradual and it was quick. He changed from one day to the next. It came faster than anticipated and dragged on painfully. By Saturday April 2 we had moved from pill medication to liquid:
Sorting out the routine of pain meds, stomach pump, TPN, and addressing nausea has been challenging with an ever-changing landscape, but we've been managing to go with the flow with humor and cooperation. Dad was having some challenges with the oral solid pills that treat nausea, pain, and inflamation. We've switched over to liquid form of those now and they seem to be more palatable. We had a nice visit from a Hospice nurse today to check in on things and truly appreciate their kindness, patience, and jovial attitude.
Dad's been resting quite a lot throughout the day and night while struggling with managing the pain and nausea, but he's not lost his sense of humor.
We joke that the TPN in its long, flat backpack looks like a pizza box.
"Your pizza, sir," I said.
"Monsieur," my sister said.
"What?" Dad asked. "They serve pizza in France?"
Sunday April 3:
I took the night shift to give Mom and my sister a break. Dad and I had frequent interactions as he struggled to find comfortable positions for sleeping to counter the pain and nausea. We think that today some of the nausea has abated due to the introduction of a different med. The pain is also being met with continued meds and it all seems to help.
We woke up this morning to the rainy thundersnow sleet, with dogs taking cover, and slush ice covering the eastern facing kitchen . While it was a grey day, it felt kind of Spring-filled as we watched some of the snow melt in the front yard to show grasses underneath. We were also treated to a pair of sandhill cranes flying over the house, which Dad smiled at hearing.
I won't speak for the rest of my family, but it seems to me an interesting situation as life is now punctuated by hourly medications and not by the names of days or numbered dates. Memory loss can be contagious, as I tell my sister that I'll remember to ask Mom about something, forget what that thing was, ask my sister, she forgets, and we all end up giggling on Mom's bed for a while. We have a delicate power to enjoy humor in the little details and absurdities of our own activities.
Last night, he was excited about brushing his teeth so we maneuvered him into the bathroom and returned him to bed with a bright smile. Today, he did the same, although it took a bit more energy out of him so we might be bringing the bathroom to him next time -- bedside service!
Dad's still showing his wit now and again with wise cracks or concurring with one side or the other in jokes (ahem, my sister won the hospital-corner contest in the bed-making today), although he does seem to be lacking a bit of steam. We're grateful for the quiet moments when we're able to provide some comfort through reading aloud or a back rub, and are fortunate for the chance to be with him - and be together.
These were not private diary posts, but communications to family and friends. My father lost speed and steam and energy and life very quickly over time. It was just too hard for me to say it directly. And the backrubs were constant. It seemed that the tumor on his left kidney was causing severe pain and it helped to press on it. My sister, with the claw hands, was best at the deep massage. I was better at a more reiki type of activity, with my hands centered on his back as he sat, meditating on a cool light-blue light spilling throughout his body, cooling the firey heat of the cancer. My aunt commented that she thought I looked like I was guiding him from a cocoon into a butterfly.
Meds were the quarters for the day: morning, noon, afternoon, night. It was ABC med 4 times a day, DEF med 2 times, GHI at night, JKL as needed but only every 4 hours. There was not only the tumor on his left kidney but the cancer that had appeared to spread along the intestine below the stomach, which caused the appearance of a "blockage", thus complicating any intake of liquids or food for the past several months and also leading to the quick switch to liquid meds. The liquid versions of his pills were foul tasting (apparently - not that I tried his ketamine - thank god for being in AA! I remember hearing about the raver kids in college totally getting off on Special K... I can only imagine the hell that would have been if I decided to party), so we added apple juice to the mix, and later orange gatorade. And, later, when even liquid wouldn't stay down or would cause too much nausea, liquid drops under the tongue. Still the same morning, noon, afternoon, and night.
Time disappears. Time is not going outside for a walk with the dogs around the yard because you forget who's tagged in for med time. Time is give the meds now, find something to do for four hours, give the next round of meds. Check dad. Rub dad. Eat something. Watch the eagles. Talk about paperwork that's gotta get done. More meds.
Monday April 4:
Dad rested quite a bit until we had a visit from the home health aide who was so cheerful and compassionate, friendly and gentle. She came over to help with showering, but as Dad is very low on energy she was able to give a bed bath. Turns out her whole family is in the caretaking business and we might meet her cousin later this week for Dad's next bed bath, nail trimming, and shaving. The whole experience totally mellowed Dad out so that he slept most of the rest of the day except when the NP stopped by.
The NP's pretty great, too. She changed Dad's port, brought new supplies, helped us understand better how to comfort and support him, and listened to his chest. Dad's breathing had changed over the weekend, which we were assured is a natural part of the process. We also wanted to talk to her about pain management. While the pain med doses were helping, Dad was still feeling enough pain that he was interested in addressing it better. It wasn't an easy decision for us, because neither Dad nor Mom, my sister, or I enjoy the side effects of grogginess and haziness. But it was also a very important decision for us to make. Managing his pain and providing comfort is key at this stage. So, we all decided together that it would be better to increase the doses.
This was a crucial decision and discussion. Most interestingly, is how we all sat with the NP in dad's room and talked it through - dad including. It was clearly a major step in the process. Up the pain meds, reduce the ability to interact.
After the NP visited with Dad and changed the port, she sat with Mom, my sister, and me and patiently answered all our questions (that we had at the time - new ones arise every minute it seems). While trying to pinpoint the last moment would be helpful for our preparation - and his - it's just not as obvious as a date on a calendar or a moon phase. But there are symptoms to look for and we're paying attention for them, while focusing on giving the most patient and loving care we can. Of course, as you all know Dad, it can sometimes be challenging. He's a smart customer, a man with opinions, and has an eye for detail and attention. Despite the meds haze and the fog that pervades, he still appreciates a towel on his lap as we change tubes, a specific way of preparing for certain medical procedures, etc. But as his daughters, we have also inherited quite the same traits, so we embellish our own knack for detail by folding cords just so, cleaning connections well, and comprehending the source of some of his needs. (Perhaps these are both our separate but similar ways of expressing some control over a situation that has none and changes every hour.) As his wife, Mom patiently humors and takes on intimate tasks with courage.
Tuesday, April 5:
Dad rested most of the day, partially due to the awesome bed bath he'd gotten on Monday and a lot to do with the need for rest now. My sister and I took turns tagging in/out to help Dad with meds, a process that seems to evolve quickly.
Wednesday, April 6:
Having increased the pain meds in his port, the other medications to address the symptoms for nausea and longer-term pain have become a bit harder to ingest. The fog slows things down a lot and his stomach, growing more sensitive to the slightest additions or changes, isn't as receptive to the liquid meds. Despite this, last night he slept rather well - almost too well! As the night nurse, I tried to balance the urge to make sure he was alright and the need for sleep for us both. Thankfully - and not - he's started having random, infrequent hiccups that were an indication to me that he was doing okay through the night.
This morning, I woke him up for meds and also was able to share some really cool news. Someone he supported in the elections won. He was so happy to hear this news, his face lit up and the fog was visibly and quickly lifted - if only momentarily. I could tell he was proud, thankful, and pleased for the candidate.
Meds are again a challenge so we've moved to providing them with droppers under the tongue. The taste and scent don't seem as irritating to him today and he seems relieved of the process of pysching himself up for them, getting them to his mouth, swallowing, and concentrating on relaxing (ha!) to abate nausea.
We had a nice visit with the social worker this afternoon, and my sister got a breather in town. I was able to get some work done this afternoon as Dad slept. The spring sun has melted away quite a lot of the snow. My sister got to see a huge flock of swans fly overhead the house. Mom's enjoyed romps with the dogs in the yard. Dad's been able to hear some of the birds singing. And we've all benefited from fresh air flowing through the house - finally, windows open!
We were also visited the past days by neighbors in the area who have become friends either prior to Dad's illness or during these recent days. We're grateful for the dog-sitting (gives them a relief from being in the same house/yard and allows them a break from the stress of caregiving too), books on hospice care, the offer to run grocery shopping, the many dishes of homemade soup, pasta, chili, pie, jam, and the like. As most know, it's tiring giving care and by the end of the day or even at morning breakfast it's hard to find the gusto for cooking or even finding flavor in food. It's been such a relief to have all this healthy food made with love, and the brief but kind visits.
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It was Monday when the nurse started having discussions with us about timelines and provided us some literature on the dying process. My sister and I, internet savvy and hounds for knowledge, had already looked up all of these things online. It still didn't seem real. Although, we watched for the symptoms. While we didn't have all of the signs play out, we did notice
Signs of the preactive phase of dying:
-increased restlessness, confusion, agitation, inability to stay content in one position and insisting on changing positions frequently (exhausting family and caregivers)
-increased periods of sleep, lethargy
-beginning to show periods of pausing in the breathing (apnea) whether awake or sleeping
Signs of the Active Phase of Dying
-dramatic changes in the breathing pattern including apnea, but also including very rapid breathing or cyclic changes in the patterns of breathing (such as slow progressing to very fast and then slow again, or shallow progressing to very deep breathing while also changing rate of breathing to very fast and then slow)
-inability to swallow any fluids at all (not taking any food by mouth voluntarily as well)
-patient breathing through wide open mouth continuously and no longer can speak even if awake
-patient's extremities (such as hands, arms, feet and legs) feel very cold to touch
-jaw drop; the patient's jaw is no longer held straight and may drop to the side their head is lying towards
-mottling
My sister couldn't stop with the mottling. It was her one sign. She'd over-fiddle with his catheter bag, working gravity to help pull more urine out of his bladder. We had had a bad night when the cath had gotten plugged with mucus and he wet himself. I think more than anything my father hated bodily fluids for some reason. He could mow the lawn in 80F weather on my grandparents' farm, sweat buckets, joke around and rub his sweaty face on yours. But there was something very undignified for him in pee. After this episode, my sister couldn't stop fiddling. She even roped me in to the gravity game.
And if it wasn't the cath bag, it was mottling. "Look at his feet." He would sit on the edge of his bed for hours (before we got the way more comfortable hospital bed that could be raised up and lowered, and could prop his knees up). He'd sway, but not want to lie down. His feet would turn purplish and get cold. But he loved his bed. He paid like thousands of dollars for it. So, it took us a while to figure out that a hospital bed would be better. He only stayed in it 5 days.
The mottling. It would come and go. Toward the last days it crept up more greatly. On the morning that he died, it crept up all the way to his bald head.
It was around this time that he also started to give us glimpses. The hospice nurse called it a gift. His hallucinations or visions. Whatever you want to call them. Walking between death and life. Seeing the afterworld. Or, if you prefer, his brain started misfiring dreams.
4/7/2011, 2:11pm:
Sitting with him after the Fed Ex truck left.
He said, "Trucks can only go one-way on one-way streets."
I said, "Yes, there's only driving one-way on the one-way streets. You can't drive both ways on a one-way street."
He said, "There are only one-way streets. Let me know if you want me to drive/take you there/show you/you need to get there." (Something along those lines, as if he could drive the one-way streets or would know them. I had no idea what he was talking about. I was thinking that he was remembering driving the streets of Toledo, Spain.). "Can only go one-way so it takes a while."
[Then I realized he might have meant the path to the next life.]
He continued, "If you go à pied you can go both ways." [à pied / a pie = on foot]
I said: [in French and then Spanish:] "Si tu est a pied, tu pouvouis marcher. Si tu estas a pie, tu puedes caminar. If you go on foot you can walk (it).... "
I said: "Remember the streets in Toledo, Spain? Very narrow one-way streets. But beautiful. I bet the one-way streets are beautiful there. Are they beautiful?"
Dad went back to sleep and we helped him lay down.
One night the pain meds ran out. Because they'd be one hell of a hot commodity on the market, we weren't given the passcode to set him up with a new bag. It was about midnight. Midnight in the middle of the countryside. The unlucky hospice nurse, who we saw about 4 nights in a row for a bad luck stretch, had to drive 45 minutes to get to us. (This wasn't troubling, because Dad was a DNR - do not resuscitate. It just meant that we would worry that he wouldn't get his pain meds, the machine would continue beeping, and our sleepless night would now be punctuated with more stress.) We paused his pain meds for a bit while we waited on her arrival. When she got there, she had to walk through the instructions to set it up. And while my sister and I stood by her side to help, we were all treated to a message from the other world:
4/7/2011, midnight, Dana Hospice Nurse visiting, squatting at side of bed, working on laptop. Dad just bolted up and with a smile and giddy almost like a schoolgirl, glowing eyes asked each one of us:
"Are you my boyfriend?
Are you my boyfriend?
Who's my boyfriend?
"There's a party. I want to leave this world and go to the party. Can I leave this world and go to the party?"
- My sister and I replied yes. Of course.
Then, he said that there's no water at the party and could we get him some.
He turned to me and said "mamoosh babcrushka with ice" We asked him to clarify because we thought he said with crushed ice. He repeated "mamoosh babcrushka with ice".
Then, he lied back down.
I was simultaneously elated and terrified. When the nurse had finished hooking up the pain meds, we went into the hall and whispered about what just happened. Whispered, because, while my father had suffered from some hearing loss due to flying military airplanes for much of his career, toward the end of life, he could hear a pin drop 2 rooms over.
I started to cry, while smiling. (This actually happened frequently the day after a night shift.) This was an incredibly beautiful and moving moment, but from this night onwards I was constantly afraid that I'd be alone on night duty and have to deal with another spooky communication like that. I also felt more and more sensitive to the creaks in the house, which only happened in his bedroom or in the living room where we slept. I could sense death walking the halls, standing on the porch outside, and hovering in my dad's bedroom.
I don't remember which day we realized that we needed to divide ourselves up. We'd been doing things as the 3 of us: sitting by his side, providing meds, making dinner. We realized at some point, I think his sister suggested it to me and I spoke it aloud to my sister and mom, that it would help us all more if we split up efforts so we weren't wearing ourselves out.
It was around this point, too, that we decided we needed take the counsel: tell your loved one it's okay to let go. Individually, we spent some time with him and said our goodbyes. I told him that I knew we'd known each other in previous lives and that we'd know each other again. I told him that I knew he'd always be with me. I told him that I'd always loved his hands - long, lean fingers with sturdy, flat nails. I told him that I loved him and would always love him. And, I held his hand. And, his glazed eyes shed one small tear out of the left side. And, he said, "L, I love you, too." And, I will always always always carry that.
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Saturday, April 9:
[Mostly written by my mom.] The nights are when the tigers prowl & it's without fail that something goes awry: battery failure of a machine, which was easily changeable thank goodness; pain med bag reached low quantity requiring a midnight visit from a Hospice nurse; a change in port tubes that resulted in an unexpected inability to attach needed nutrients, which resulted in a visit from nurse close to midnight; and his new Foley catheter got plugged because they'd told us it did not need flushing - but I guess they don't know much about NEO bladders - resulting in a nurse called in at 4am to flush and help change bedding and clothing.
Mom wrote, "the girls are my mainstay as night nurses, the resultant days are this:"
Dad is comfortable, without pain, and taking his liquid meds as directed by our Doc. As holding his mouth open with tongue to the roof was cumbersome, we're now holding his lip open and placing into the inside of the cheek. The stomach pump is still running to assist with reducing nausea.
He's not speaking with us, but communicates with his eyes & attentive following of requests - eg to open his mouth so we can swab it out gently to prevent mouth issues.
The days grow longer as sunset is later, the birds are back and calling - we open his window for both fresh air & sounds - however, we know that time has also grown short for us, as a family of four. The best we can do is to keep him comfortable, loved, watched over & be grateful for each little time piece we have.
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Riddle of the time of passing
Me: Dad, we're done with meds. You can rest now.
Dad: I'll rest after the celebration of the sneeze and the golden birthday. After we have dinner. Now, let's get on with this process... (looking at the stomach pump, the pain med pump, the bedside commode, the garbage bin)
Me, searching on Google finding nothing, walking the dogs over their land, thinking and thinking: What's a celebration of a sneeze? "Bless you"... Sunday? ...Who's got a golden birthday in April? My cousin's baby turns 1 year old on 4-10-11, maybe it's a mix up: 1 on 4-11-11?
From the death bed of my father
Dad (looking at the floor between he and my sister, staring off into the distance; as I walk up to his bedside): Look out for the pathway.
Me: Am I on it?
Dad: Almost.
My sister: Am I on it?
Dad: Perhaps.
I think it was over the weekend that we decided, with some thought and little fanfare that we'd remove the TPN. At the time, while I wasn't feeling impatient, I was feeling overly sensitive to my father's pain. If keeping him on TPN was causing him to suffer more, if it prolonged or extended the dying process, it made no sense to me. And I knew this. As a family, we had already talked to each other about the "if we end up in a coma" decision - pull the plug. We had the option to ween him or stop providing it. I was prepared to stop altogether.
I was ready for this because my father was not my father any longer. He was a shell. Once I had said my good-byes, I knew that he was crossing over more and more, and what we were left to do was care for the vessel he had needed and used. We needed to guide it as gently as possible to a still place so he could use the remaining energy and focus to get out of it. Discontinuing TPN allowed the body to chart its own natural course, freeing the spirit from the veiny bonds.
I guess my sister and mom weren't as ready so we decided to ween. That only lasted a day though because no one was interested in staying up one hour later to start the TPN or waking up an hour earlier to stop it. And, the way our brains were working, there wasn't an option to change the process and introduce it during the day.
After we stopped the TPN, his urine output continued steadily, which was shocking in a way. Nothing going in. Why is it coming out? And, oddly, the left kidney was being pinched by a tumor and the right kidney was his bad one, so how on earth was it happening?
He was a skeleton when he died. My sister said he looked like a concentration camp victim. When the nurse came to bathe him again, or when we wanted to freshen him up to prevent bed sores, we would roll him on his side. It was painful for him so I tried to make it light as I leaned over and held his chest, arms, and face to me, "I'm the lucky daughter. I get the special hugs today." But his body was so brittle and bony. I hated that it caused him pain.
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Sunday April 10:
We are grateful for our decision to bring him home under Hospice care, for the comfort that he feels being surrounded by our safe, cozy home & the caring that we have patiently given him.
He sleeps peacefully, calmly and painlessly as Mom, my sister, and I tend to him; Dad's time is now his own to leave when he is ready.
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His friends and family sent so many good words. We read many of them in the beginning, but over time he wasn't interested or refused. I think he was regretful and wanted to hold on. He had been fighting the cancer for so long and was ready to fight more. Just that the cancer, which was made of his own body, had the same will. I think after a time the words hurt him and tied him more to this world, so he refused to hear them. And, they were sweet:
I understand you have filed your flight plan and that the tower has cleared you for take off. This will be your flight of a lifetime and I know that a happy landing awaits. I am so glad to be your friend. Know that we have your "six" and that friendship never ends.
I love you.
Charles Z.
I had night duty on Monday, April 11. I had feared it the Saturday, 9th. But I used the AA mantra "I'm turning it over to you. I'm turning it over to you." And asked my Higher Power for all the strength I could summon to brave the night. Monday night wasn't scary. Death wasn't clamoring. It wasn't a bull impatiently clawing at the dirt. It wasn't haunting. It was, instead, nearby. Death was watching now, with a lazy eye, disinterested with the torment my father's body was facing. Disinterested, but not unaffected.
My sister had slept in his room the night before, in an uncomfortable chair and position. So, I pulled the more comfy chair up, grabbed an ottoman, and propped up next to his bed with a blanket wrapped around me, my hand holding his.
His breathing was more difficult now. And the death rattle increased tremendously. Supposedly it's supposed to be more discomforting to us alive people than to the dying, but I disagree. My father tried with might to sit up a few times to cough it up. And when it bothered him, I hit the pain med button. I hit it as often as I could and sometimes timed the 15-minute intervals so I could preempt the complication. For some reason, at the time, my sister felt negatively about that action and choice of mine, but the hospice nurse the next day indicated it was appropriate to get ahead of the pain. Every 15 minutes. All night. I think it was one of the longest nights of my life. But it meant probably the most of anything in my life.
My sister had the night of April 12. He wasn't as bad. His breathing was still more inconsistent but the rattle had subsided quite a lot from what we hoped was the atropine finally working.
The morning of the 13th, I woke up from the couch and relieved my sister at about 7:30am. I told her to go downstairs to sleep, but she was stubborn and said no. We started the coffee. His breathing was raspy, louder, almost demanding something. The hospice nurse called to check in. We planned to see her in the afternoon. I got on the internet, looking for some good, magic words. A poem perhaps. Something to read to him to help him let go, send him on his way. I stopped at "On Death" by Kahlil Gibran and thought I should read this later on in the day. My mom had woken up, opened the blinds in his bedroom, the sun was soft, bright spring. She opened the window to let the birds' songs in and sat by my dad's side and my sister was on his other side. I put the laptop down and went to the room, and stood at the foot of his bed. My sister stood up and made the motions to cleanse his chi, floating her hands above his body, sweeping, sweeping. I grabbed the stool and sat down, holding his feet, his cold feet, in my hands. The mottling was visible up on his face.
I got up and got my camera - I had been taking photos throughout - and snapped a few. I sat back down on the stool and held his feet. My sister reached her hand across to his chest. His breathing had slowed. We sat in silence, holding him. She reached her hand over to his chest again and felt for a heartbeat. I watched him. In the quickest instance, I saw a light, white swirl like smoke tendrils above his belly. My sister stood up and reached over to his heart again.
We didn't really know what to do. We sat for a few minutes. And then, we decided to call the hospice nurse. As I got up to call, I looked out the window and she was pulling up. She came into the bedroom, listened with the stethoscope. "Are you sure?" I asked her.
She left us and did some work in the kitchen. I closed the bedroom door and created a sacred space, cleansed his chakras, closed the space. Mom decided what he'd wear for the cremation. I took photos. We called the funeral home. The hospice nurse waited. They put him on the gurney, leaving his face uncovered. We followed him out. They lifted him into the hearse (that was a PT Cruiser). We kissed his forehead. The hospice nurse left.
Wednesday, April 13:
One of Dad's go-to sayings was the 7 Ps one: Proper prior planning prevents piss poor performance.
This morning, Mom, my sister, and I each felt compelled to hang out in Dad's room with him a bit before 10am this morning. His breathing had become more shallow, but much less labored and more peaceful. We held his hands and spoke softly to him. The stomach pump was turned off and, with the window open, we could hear the morning birds chirping. He passed at 10:10 (the unofficial time). The hospice nurse arrived at 10:20, unplanned by us three, but Dad had probably arranged it. You know him...
We plan to spend some quiet time today, resting and discussing memorial service plans.
