So Young’s Last Days

Warning: This is a very long post. Don’t read it if  you think that the details of So Young’s death will disturb you. Her passing was peaceful, but each person will respond differently to this kind of information.

I decided to write about So Young’s last days, partly for therapeutic reasons and partly just to get the facts out there in case others on the Internet can benefit from them some day. As a first-time caregiver for a person with a terminal illness, you are often physically isolated (although I was much less so than most people) and are definitely inexperienced, so you don’t know what to expect each day, signs to look for, etc. The hospice people help with this, but you encounter a lot of things you have never seen, and you don’t know quite what to make of them. I found some resources for this on the Internet that were useful and thought I would add another resource to the mix.

This was a particularly dark time, and I’m going to be realistic in my presentation. This blog post isn’t for everyone. I plan to post about brighter things later, such as her memorial service.

By the night of Friday, February 22, So Young was in what is described as a “coma-like sleep.” She didn’t wake up at all until her death five days later. On Friday, even in that state, I fed her a small amount of apple sauce containing her usual medication (steroids, etc.) and a little bit of thickened juice by spoon, because even though she was deeply asleep and we couldn’t wake her up, she was still doing eating motions with her mouth and eventually swallowing. At that point, it was all I knew to do, because her entire regimen had consisted of almost constant sleeping punctuated by eating three times a day. The hospice nurse felt that she had “turned a corner,” so that night I also began giving her the liquid versions of morphine (for pain and to help with breathing) and lorazepam (for anxiety), along with atropine to keep her throat dry, because she had been dealing with a very congested-sounding throat for the last couple of days. The amount of morphine she was on at that point was extremely low, roughly equivalent to taking a single dose of Tylenol.

So Young was on oxygen constantly starting Friday night. It wasn’t a mask but a tube that went up her nose that is called a nasal cannula.

The kids were out of the house by Friday night at various sleep overs, which enabled me to focus on So Young fulltime. I had planned on continuing work part-time on Monday, but when So Young fell asleep, I knew that was no longer a possibility.

On Saturday morning, I tried to feed So Young apple sauce with medicine and thickened juice by spoon again, but she didn’t move her mouth at all or swallow. The solid food just stayed in the front of her mouth. The liquid rolled down her throat, and she coughed and moaned faintly, because it was causing her to choke. I stopped once I saw this happening. I took her axillary temperature (under her arm pit), and she was running a fever, which I knew to be a sign of impending death in terminal patients.

Hospice wasn’t coming on the weekends, but they had a nurse come that weekend because of the seriousness of So Young’s condition. I was really anxious to have the nurse there for a visit. I was distressed. I didn’t know what to do. All I had been doing until then was feeding So Young and changing her, but now it seemed I could not feed her at all.

The nurse arrived around 3 p.m. on Saturday. She was an African lady named Josephine. We had had great nurses and other staff from Capital Caring until then. I worried that she would not be as good (I mean, how lucky could we get?), but she was. She checked So Young’s vitals and gave me a technique for lowering her temperature. She filled two latex gloves with ice, wrapped them in wash cloths, and put them under So Young’s armpits. She placed a cool, wet wash cloth on her forehead. Josephine said that we could use acetaminophen suppositories to lower So Young’s temperature but that this would work better. I felt like she was letting me in on some homegrown fever remedy. I have since been told that it is actually quite a common technique.

Lowering So Young’s temperature was just for her comfort. A high fever was normal in these circumstances. The worst we could expect was a seizure as a result of the fever, something that So Young had never had. I applied Josephine’s technique often in the upcoming days, although I soon found some reusable cold compresses in the refrigerator that were easier to use than the latex glove approach. I think that this technique enabled me to keep So Young’s temperature fairly stable until her death without using medication.

I played dumb and asked Josephine why So Young had a temperature. She said it meant that the end is near. She said that So Young could have as little as 24 to 48 hours or a few days. “It depends on the person,” she said.

Josephine recommended increasing So Young’s morphine dose by .25 ml (up to .5 ml every four hours), since she was still pulling at her sheets every once in a while, which indicated pain or discomfort. Tugging at the sheets and other signs of agitation are also common signs that a person is dying. After I increased the dose, So Young seemed a lot more comfortable and stopped tugging at her sheets.

Before she left, Josephine admonished me not to force feed So Young liquids. It was then that I realized So Young would probably not eat or drink again. This was difficult to take for a couple of days and is still painful to think about, because my natural inclination was to feed and take care of her. However, she was dying, and force feeding her would only cause her to choke. It could actually increase her suffering by, for example, causing aspiration pneumonia.

Josephine visited in the early afternoon on Saturday, and So Young hadn’t urinated since Friday night. Josephine said that they may have to  So Young if she didn’t pee by Sunday morning. She did urinate Sunday morning, but the decision was made later that we would not catheterize So Young at all, since it would be uncomfortable for her and the diapers were catching things fine. So Young would even sleep through the diaper changes, although she moaned faintly because it was an uncomfortable process for her. The last time she urinated was Monday afternoon. Her urine had been tea-colored fairly consistently, which is a sign of organ failure and normal for terminal patients.

I was alone with So Young all day Saturday. The next few days were a nightmare for me emotionally. I felt paralyzed, unable to do anything. I felt like I was starving So Young when every impulse in my being told me to feed her. She was dying naturally, which was her wish. Keeping her on fluids and machines when we knew she would die would keep her in a prolonged coma and was another level of suffering that she did not want to endure. I felt like I was waiting for So Young to die, which indeed I was.

On Sunday morning, I attended church live via a Google Meetup (a video streaming service) for the first time. They sang many songs that So Young enjoyed, including “Amazing Grace,” so I brought the laptop upstairs for So Young to “listen,” even though she was very much unconscious. I was very touched that the church did this. It has been clear throughout this ordeal that they have not only been paying attention to our situation but have been very much beside us.

The girls all started staying at Mom and Dad’s house Sunday night. We did this to avoid various nightmare scenarios that could have occurred should the girls have been in the house when So Young passed away and was taken out of the house. This turned out to be a good decision, because she did indeed pass late at night on a weekday.

Late Sunday night, I called hospice because So Young’s breathing sounded especially congested. They didn’t recommend changing anything medication-wise but said I should elevate her more in the bed.

On Monday, So Young’s breathing still sounded very congested. The hospice nurse John directed me to increase her morphine to .5 ml every two hours. It seemed to help with the congestion. Many non-medical people don’t realize that morphine actually helps with breathing. During the course of the next several days, So Young had several breathing episodes, including labored breathing and one case in which she had apnea and her breathing clearly stopped altogether for a few seconds. Hospice said that these episodes were normal. Our wonderful nurse’s aide Cindy said that I should time the apnea incidents. If So Young stopped breathing for a minute or two, it would mean that she had passed, and I should take her oxygen off, because that can cause the person to appear to be breathing even after they have expired.

The increased dose of morphine meant that I was up every two hours all night long to keep So Young medicated. I didn’t mind doing it at all, but it was exhausting after a while.

On Tuesday, John (the nurse) started coming every day instead of once a week. By now, So Young had lived over three days without fluids. A person typically lives three to five days without fluids but could possibly live as many as ten. John reiterated that she could go anytime, although part of me believed she would live much longer than a typical person, since she was young and strong when she was diagnosed.

The number of visitors increased as So Young’s death approached, sometimes to six or seven a day, all day long. This was a source of some stress for me, because I wanted visitors to be quiet and reverent, since it was clear So Young was dying. Visits before were more about saying “hi” and keeping So Young happy and entertained. Now they were about saying goodbye. Despite my fears, the visitors were a great blessing and didn’t show themselves to be irreverent.

During So Young’s last week, Jin and Grace increased their visits to every day. They had made a pact with So Young to be by her side until the very end, and they were true to their promise. Laurie came by and made handprints in clay of So Young’s hands so that the girls would have them after she died. So Me came by as often as she could. It was very hard for her those last days. I think the fact that she was saying goodbye hit her pretty hard that week.

Jin and Grace

Jin and Grace on a routine visit with So Young a few months before she passed. You can tell So Young is a lot more aware than she was in February. Still, the image embodies how So Young was surrounded by friends until her death.

Several of us talked to So Young on separate occasions that week and told her that it was OK to let go. We told her that we would miss her dearly but that God, the family, and our community of faith would take care of the girls and me. These were hard conversations to have, but we felt like we needed to say it in case she was holding on for us. When she was healthier, So Young had often expressed worry about the girls and I should she pass, so there was good reason to do this.

I felt that I had been saying goodbye to So Young for a long time. My doctor admonished me to continue talking to So Young “every hour or two,” speaking into her ear and telling her that I am here and that I love her. I did this every time I gave her medicine or took her temperature.

Looking back, she may have been waiting to say goodbye to Ann, her friend from Seattle who had accepted Christ through So Young. Ann came on Tuesday and left on Wednesday. She was the last non-family visitor to see So Young alive. So Young had been aware before she entered the coma that Ann was going to visit. Ann spent a lot of time with So Young but also with Mom and me. It was a blessing to hear the peace she has found now that she knows Christ. Things aren’t easy or perfect for her, but she has deep purpose and meaning in her life now.

So Me also came by Wednesday night to spend time with her sister. She told So Young again that she could let go. So Me was So Young’s last visitor.

So Young’s visitors on her last day were Laurie, Jin, Grace, Kenji, Christine, Linda (who brought me Thai food), Sungjin, John, Ann, and So Me. There were many visitors that week, but this particular group has special significance in my mind because they ministered to her on her last day.

At 8 p.m. Wednesday night, So Young’s body temperature was even higher than normal, at 102.4 axillary. I applied ice packs, and when I checked her temperature at 10 p.m., it had gone down to 101.7 axillary. I gave So Young her last dose of medication at around 10 p.m. as well.

Before I went to sleep next to her that night, I noticed that her breathing was labored again. I also noticed that the skin on her face, feet, and knees was mottled. This was another sign of impending death that hospice had been watching for. Her hands and feet were still warm, with the exception of her right foot, which had generally been cooler than the rest of her body for a while anyway. I cracked the window next to my side of the bed, because the room felt muggy to me. I thought that maybe the warmth of the room (usually caused by the oxygen machine) was contributing to her temperature that night.

Part of me said that I should stay awake because of these changes just in case she died, but I second-guessed myself because I had thought the same thing many, many times in the past. I decided to go to sleep instead, since I was heavily sleep-deprived anyway and would see her in two hours.

I specifically made note of the time when I went to sleep: 11:18 p.m. I slept through my midnight alarm and awoke at 1:20 a.m. for some reason. I was very groggy and almost unable to open my eyes. I looked over at So Young. Her mouth was closed, which was strange, because it had hung open since Friday night. I looked at her chest to see if she was breathing. Nothing. I immediately realized she was dead. Still, she was very warm, so I doubted. I could not feel a pulse on her nearest (left) arm, but that didn’t mean a whole lot because I’m not accustomed to taking pulses. I got up and turned on the lights in the room. She was much more mottled than before. Her left arm looked especially pale and mottled. I stared at her for signs of breathing or eye movement behind her eyelids (her eyes were still closed). Again, nothing. I kind of paced beside the bed staring at her.

I was afraid, because I am very unaccustomed to dead people and had mostly seen them depicted in movies. My fear surprised me. I thought I was more rational than that and besides, this was So Young. I was afraid to touch her body to check her heartbeat or pulse again, but eventually I got up my nerve and did it. I was now solidly convinced that she had passed. I removed the oxygen tube from her face.

I cried and prayed and talked to So Young for a little while. She looked so pitiful in the bed. Her expression was peaceful but almost like that of a sad child. I felt so bad for her, that she had suffered so much unto death. Her suffering really hit me at that moment. But I also knew that she was now in heaven. Her position hadn’t changed in days. She was still in a pose of restful sleep with her eyes gently closed.

I took off two of So Young’s bracelets, planning to give them to the girls later. I tried to take off her wedding and engagement rings, which she had kept on throughout her illness and often admired when she was sick, but I could not.

I felt that she must have just stopped breathing while asleep and that her soul had quietly left her body. My mom said later that maybe she had given me one last kiss on the way up to heaven that had woken me up. Perhaps she had passed through the open window and visited her best friend Jin for one last chat, to talk to her in her dreams, happily telling her how much she loved each of her girls, wanting Jin to relay that message to comfort us. (Jin dreamed about So Young talking to her about each girl the night So Young passed.)

I called hospice. I told them that I thought So Young had passed but wasn’t sure. The nurse on the line said that everybody who calls when somebody passes isn’t sure, but the person has always passed. She told me a nurse would be at the house within an hour.

For a moment I considered not calling anyone else. I don’t know why, but my impulse is generally to go it alone. Still, I have learned that going it alone generally doesn’t work out all that well. I thought about how So Young’s death isn’t a private thing. It affects many people. Also, there was no telling what would happen or how I would react. I needed any help I could get. So I called my parents, which was the plan. Dad answered. I couldn’t talk. He said, “I understand, son. I’ll be there right away.”

Dad arrived, and soon the hospice nurse arrived. I walked her upstairs. She said So Young looked beautiful. She checked her heartbeat very carefully for a long time and “pronounced” her. I believe this happened at 2:25 a.m., which is the time of death on her death certificate. The nurse took off So Young’s wedding ring and engagement ring and gave them to me. We went downstairs while she arranged So Young’s body in preparation for the mortuary coming. The hospice nurse called the mortuary.

The mortuary called me and said they would be at the house in two hours. The nurse left. Dad and I sat in the living room, talked, and worked on funeral preparations, which we had already started in recent days. Thankfully, we didn’t have to buy a plot, casket, etc., because my grandfather had already paid for them and Dad had taken care of all of the details months ago. Nevertheless, there was a huge amount of work to do. It was like planning a wedding in less than two days.

A man and woman eventually arrived from the mortuary and took So Young away. Watching them take So Young out of the house was brutal. I had to watch it for some reason.

I took a shower, anticipating that I had a long day ahead of me. Dad and I left for my parents’ house, arriving at maybe 4:30 a.m. The plan was for me to sleep there for an hour or two and tell the girls when they woke up that morning. Mom embraced me when I entered the house. I’m sure she had been concerned and praying for hours, unable to sleep. Somehow I fell asleep for an hour in the basement. I woke up and sat in the living room talking to Mom and Dad for a while, tearfully reflecting on the life that So Young had lived and the events of the night.

It had been the saddest night of my life, but somewhere in a realm we could not see, So Young was restored and happier than she had ever been.

14 Responses

  1. How very raw is the recounting of your So Young’s death. And yet your and her humanity are clarion calls to the magnificence of the profound love you two shared until the final moment — only from the Divine…

    James, I am weeping at this testimony and thank you for sharing the most personal and difficult details of your journey’s end with So Young. I have continued to bombard heaven with petitions on behalf of your three girls and you. There are more sad and lonely days ahead, my friend. But be consoled in the knowledge that, Jesus Himself wept in the anticipation of His suffering and death. He is right there with you. And we are with you as well.

    Be of good courage, James.

    Pax,
    Amy

  2. James, thank you for sharing your heart. I weep as I write these words, and I know, as you’ve so eloquently wrote, So Young has been “restored and happier than she had ever been”.

  3. Paul tells husbands to love their wives as Christ loves the Church. You did and do this, James.You demonstrate your faith in our Lord and your complete love for your sweet So Young. Her best friends including Jin, Grace, Laurie, and others demonstrated the love of Christ daily in their faithful care of our greatly loved, So Young.

  4. James there are no words. John and I are praying for you and the girls.

  5. James,
    Dave and I love you and are thinking of you. Thank you for sharing so much of yourself.

  6. thank you, James. I really needed to read that. Grateful for your vulnerability and selflessness in disclosing your feelings and the details on the last several hours of So Young’s life. I helps me and I know others grieve alongside you and your family. Your love and care for So Young makes God’s name look so great.

  7. James thank you for sharing the details so poignantly. I am glad you left nothing out. Surely God’s presence was with you every minute of these final days, with SoYoung too and with all of you now in the days and years ahead. Your unshakable faith in God is surely evident and I’m so glad you were surrounded with loving friends and family in the end. We are praying for you.

  8. Thank you for sharing this, allowing us to peer into something so private and tender. She’s touched so many of us. Your comments brought me to sobbing tears. I told her about the peace that I only very recently found. It would be so typical of So Young to make sure her family and friends are okay before she left.

  9. James thanks a lot for sharing. It was a poignant insight to her last days.

  10. Dear James

    I continue praying for you & your family as you participate in deep mysteries that we are not equipped or positioned to understand, but we are specifically called, like Father Abraham on Mt Moriah to hang tough through & beyond. (Gen 22)

    People try to make excuses for God’s seeming harshness & cruelty…. I know I had many gut-wrenching prayers, including rebuking God, when I could not protect or even allay great harm or sorrow, especially when our children were pre-teens. I remember essentially hissing to God Almighty, “Sure, You’ve got me as a follower for life, but how do you expect ANYBODY else to believe You are a God of Love or to actually love You, if You keep dishing stuff out like this?”
    (I was depressed & dealing w/ my “father” images that pretty much polluted the pool for generalizing that God was in some way a super-duper sized version of a father. I would say, experientially, that He has taken me by a round-about path to “PromisedLand”, so that like Job, I can learn who He really IS & learn to recognize / trust His voice).

    But even up to this very day, our 2 grown children in their 30’s, do not think God is particularly cuddly & they continue to put off entering into 100%, hold-back-nothing relationships w/ their / our Creator.

    Sometimes people say God is too weak to prevent bad things, but look @ what He says about Himself in Exodus 4:11-12
    So the Lord said (to Moses @ the burning bush….. Moses was protesting that he felt ill-equipped to confront Pharoah & rally his brothers in poverty & oppression)
    GOD: “Who has made man’s mouth? Or who makes the mute, the deaf, the seeing or the blind? Have not I, the Lord?”
    “Now therefore, go, & I will be with your mouth & teach you what you shall say.”

    Then in Isaiah 55:8
    “For My thoughts are NOT your thoughts, nor are your ways My ways, ” declares the Lord.

    There is a hymn that I was unfamiliar with that was the first one played when I finally had the nerve to bolt a church where there was a scandal & an attempted cover-up that was breaking my heart & risking further harm to one of our children.

    So here is the hymn that melted my heart where I stood, that I could hardly read through the tears, that went on & on & on. It was total confirmation to me that God was in the middle of His plan, that I was not crumbling in defeat although I seemed very much alone:

    How Firm a Foundation

    How firm a foundation,
    Ye saints of the Lord,
    Is laid for your faith in His excellent word!
    What more can He say than to you He has said,
    To you who for refuge to Jesus have fled?

    “Fear not, I am with thee, oh, be not dismayed,
    For I am thy God, I will still give thee aid.
    I’ll strengthen thee, help thee & cause thee to stand,
    Up-held by My righteous omnipotent hand.”

    When through the deep waters I call thee to go,
    The rivers of woe shall not thee overflow;
    For I will be with thee thy troubles to bless,
    And sanctify to thee thy deepest distress.

    When through fiery trials thy pathway shall lie,
    My grace all sufficient, shall be thy supply.
    The flame shall not hurt thee, I only design
    Thy dross to consume & thy gold to refine.

    “The soul that on Jesus hath leaned for repose,
    I will not, I will not desert to his foes.
    That soul, though all hell should endeavor to shake,
    I will never, no never, no never forsake!”

    Blessings,

    Ellen

  11. James, I sit here late at night, and am so very blessed by your account of So Young’s passing, as well as all the previous accounts. You and she have contributed greatly to my faith, and I’m sure the faith of many, many others, as you walked this path together and as you faithfully and lovingly took such sweet care of her through it all. I believe she is smiling down from a wonderful place where she is happy and healthy, and will be beside you and the girls in the days to come. Our God is an awesome God, He reigns from Heaven above…

  12. Thank you, James, for relating your experience. I am so sorry for the suffering of so many for so long, but rejoice that So Young is now restored and happier than she had ever been. I pray with you and for you and all the friends and family that I saw at the funeral who love So Young.

  13. James, thank you for sharing. our prayers are with you and the girls daily.

  14. Thank you for sharing your journey. I am a good friend of Kim Davis. Prayers for your family continue to be lifted up in Indianapolis, IN. I thank you for sharing these last moments.

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