Archive for the ‘Update’ Category

Two Months After She’s Gone, and Sure Enough I’m Still Thinking about Her
April 29, 2013

I feel like I am commemorating little anniversaries, like So Young and I did when we were college kids and first dating. “Wow, it’s been two weeks! Happy anniversary! I made you a card and wrote a poem…”

April 28 marks two months after So Young died. I have this strong feeling these days that I want to leave it behind me. By “it,” I’m not sure what I mean, but I think I mean this blog, ruminating about the fact that she has died, I’m alone, my kids have no mom, the whole mourning thing (good luck with that), etc., etc. The problem is that it’s like getting your right arm cut off and somebody telling you to stop thinking about your right arm.

I’ve met a few fellow young widow(er)s recently, and it has been refreshing. Before, I felt like nobody understood. Now I know that (besides God) there are people on earth who understand and are going through the same thing. We have similar frustrations, similar preoccupations.

Kenji reminded me in another one of those life-altering meetings  that occurs when I’m going in the wrong direction (we have too many of those) that I need to not primarily identify as a widower but as a disciple of Christ. He really pressed me on this over and over again while we sat there at Chipotle for an hour and I laughed uncomfortably, because I was clearly preoccupied with certain things (not just being a widower, but about certain things that are sort of ancillary to my condition) to the extent that he was wondering if I wasn’t idolizing those things. Anyway, long story short he’s right, and I’m struggling to reorient myself toward God rather than all these distractions and my grief. It ain’t easy. I talk to other widow(er)s, and they’re in the same boat. Still thinking about that dumb right arm.

I have a lot of new goals now, in addition to my primary life mission of being a disciple and follower of Christ. For one thing, I want to commemorate So Young properly, especially for the girls. She left a lot of journals from all stages of her life. I want to type those up for the girls, and maybe our letters, and maybe my (sanitized) journals, too. I want them to hear their mom’s voice as they grow up. New goals or not, I realize that the day-to-day running of my little family is time-consuming enough, such that as much as I want to achieve humanistic perfection in addition to becoming this really devout individual, I might have to settle for fumbling attempts at both.

I have one more eulogy to post on this blog. I reorganized the blog already to reflect the fact that she is dead. I’m not sure how many more posts I want to do. So Young is gone. I wake up in the morning and hesitate, as if I am about to put my wedding ring on. It’s a habit and I sort of pause there. I don’t put it on anymore. I’m not married to her.

Today I ran and thought about how I don’t really run for her, because she doesn’t see me. She isn’t here. I should run for Jesus. I said to myself there would be a sign at that moment if she was here. Sure enough, there was this strong breeze and a lot of petals from a cherry blossom or some such tree came blowing in front of me, across my path. It was like the snow at the funeral. It just came drifting down, right at the moment it should have, just like the snow. Winter has turned to spring. They said she wouldn’t make it to the spring.


The coolest picture I have seen in a while: So Young’s friend Sara ran the Country Music Half Marathon in Nashville yesterday in So Young’s honor and tweeted me this picture of the shoes she wore. It was a really tough run through a heavy downpour. So Young would have loved that on several levels.


Celebrating Mommy
March 17, 2013

The kids stayed home from school for over a week after their mom died (February 28 – March 11). We did things that would help us remember Mommy in a positive light and celebrate her. We had a great time. I know that might sound strange, especially since it was the week after her passing, but it makes sense for us on a couple of levels. First, the kids needed time away to mourn, but sitting around the house looking at each other (or better still, fighting with each other) wasn’t much use. Second, So Young was sick for so long that we have been dealing with her ever-increasing absence for a while. So during the week following her death, we weren’t in the middle of some kind of shock phase. We weren’t surprised she’s gone. Instead, we were deeply sad that what we thought was coming finally happened.

There is something about physically being at a significant place that helps you connect with a person who is gone. Visiting places that had significance for Mommy brought up memories, stories, and family history. The joy of talking about her life and our memories of her was interspersed with moments of sadness in realizing she is gone.

On Tuesday we went to GMU, which is where So Young and I were college sweethearts.


Wednesday was a snow day. I’m not sure what happened to Thursday. The good thing was that Prince William County schools were closed both days, so the kids technically didn’t miss school on those days.

On Friday, we visited the National Gallery of Art. We had great memories of that place from a “stay-cation” we took a couple years back. When we got there, Lindsay immediately asked if we could see the Pre-Raphaelite painting Ophelia by Millais, because she had recently studied it in school. It is a darkly beautiful painting that depicts the death of Hamlet’s potential wife, Ophelia. Well, the truth is that the National Gallery doesn’t have that painting, but on that day it did, because a Pre-Raphaelite exhibit was in town with that very painting and many such beautiful paintings by the Pre-Raphaelites. We essentially spent all of our time at the museum in that exhibit. I remember that So Young and I visited a Pre-Raphaelite exhibit in Delaware during college as part of an assignment for one of my classes.

Here are the girls under the statue of Mercury at the museum.

Art Gallery -- Mercury

There is this another area with a fountain in the museum, this one less heavily trafficked and therefore more peaceful. We fantasized that we lived there and it was part of our house.

Peaceful Fountain at Art Museum

We love the walkway to the West Building. We always have gelato and coffee at the cafe there, and then we start going back and forth on the walkway and goofing around until the security folks yell at us. Here are the girls on the walkway on Friday.

Passageway Now

And here I am on the same walkway with So Young in September 2011. (Important: That is not my purse. It is a pink bag. Dads carry strange things.)

West Building Passageway

On Saturday, we drove to Reston and stayed at the Hyatt for one night. We left late Sunday afternoon. So Young grew up in Reston, we met at the Reston Regional Library there (where we worked), and our courtship took place at the town center. So Young had even worked at the Hyatt for a while. It was where we stayed on our wedding night.

I had never noticed that the figure on the Reston Town Center fountain is also Mercury.

Reston Mercury

The girls proved to be adept at shopping.

Shopping in Reston

Here is a picture of So Young with Shannon at a similar outing (just the two of them) last year.

Shopping at Town Center

On Saturday night, the girls and I watched a late night movie at the movie theater where So Young and I went on our first date. We didn’t watch the same movie, because they aren’t playing The Crying Game there at the moment for some reason. (Don’t ask me why that was the first movie we watched together…) We watched the new Oz movie instead, which traumatized Audrey a little.

We enjoyed the breakfast buffet at the Hyatt on Sunday. Breakfast was Mommy’s favorite meal, and she especially loved the buffet at the Hyatt. Things have changed, however, because they closed the Market Street Grill (where So Young and I had dinner the night we got engaged), so we ate in a different area they have set up.


We goofed around in the pool on Saturday and at the gym on Sunday. Here is Shannon at the gym during the trip.


And here is So Young goofing around at the same gym last year.

SY Also Goofing Around

We also went ice skating. It was the last day of skating for the season. This was a really hard shot to take given our ice skating skills.

Ice Skating

For lunch, we ate at the restaurant at which So Young and I had our first date (Uno’s) and ate some of the same food.  (Again, please no questions about why you would take a girl there on a first date…) We had coffee, shopped, and walked around looking at the cute dogs that people were walking everywhere, which made us miss our dog, kind of like how So Young and I missed the kids after being away from home for a day or so.

We picked up Reyna from Nanna’s house and drove back home.

Driving Home with Reyna

So Young’s Race Is Complete
February 28, 2013

So Young went to heaven very early this morning, probably around 1 a.m. She died peacefully, without pain or struggle. We were honored to know her, but it’s clear that her race here on earth was complete, and God wanted to take her home to be with him. She always spoke so fondly of heaven. It has always been her true home.

So Young, we already miss you so much. We have missed you as a wife and mother since your illness got worse a few months ago. It is so much worse now that you are truly gone. We wish you could have stayed. Why did God take you at this age, So Young? But I’m sure on the other side you are restored. I can imagine you smiling and hearing your voice again. We just want another hug or kiss. It hurts to know we won’t have that again. But you wanted us to celebrate you going to heaven, so that’s what we are going to do. There is truly much to celebrate about you and how you lived your life. You continue to be an inspiration to many.

A visitation will be held tomorrow, March 1, from 6 p.m. to 8 p.m. at Fairfax Memorial Funeral Home. The funeral service will be on Saturday at 1 p.m. at Fairfax Memorial Funeral Home, although the funeral home strongly recommends that that you arrive no later than 12:30 p.m.

Finisher's Medal

Saying Goodbye to So Young
February 26, 2013

From James:

I wanted to write another post about how So Young is doing, since it’s evident to me that my previous post perhaps left some doubt about her condition.

So Young is dying. She has been in a coma-like sleep since Friday and cannot be woken up. She has not had anything to eat or drink since that night. Feeding her or giving her liquids would choke her and cause additional complications. Artificial feeding and hydration would merely slow a natural process that is already on its way, most probably causing additional suffering. There is no thought or hope for a medical cure. Her body is shutting down and preparing for death. The hospice people are telling us that she could go at any moment.

I am giving her a regimen of drugs orally in liquid form around the clock to keep her comfortable: morphine for pain and to help with breathing, Ativan for anxiety, and atropine drops to help dry her throat, which tends to become congested, something that happens frequently with the terminally ill. She is running a constant fever — another sign of impending death — which I regulate with ice packs and cool wash cloths throughout the day. I apply Chapstick and water to her lips to keep them moist.

Her daily regimen has completely changed, obviously. No more feedings. No more medication in apple sauce. Very few diaper changes since her fluid intake is essentially nonexistent.

So Young seems comfortable. Since sometime before Friday, she had signs of agitation or pain, occasionally pulling at her sheets with her left arm and moving her arm about. She was unable to tell us clearly what was wrong, and then by Friday she could no longer speak to tell us. We suspected it was discomfort related to being in the bed for many weeks — more joint and muscle pain than anything else. She has no skin problems like bedsores. Her discomfort continued through Saturday morning, but the medical people adjusted the morphine dose to what seems to be a perfect amount at the moment to keep her calm and comfortable. She shows no signs of agitation unless she is having breathing trouble. She has had apnea and a few other examples of struggling to breathe, some of which is an inevitable part of the dying process. Morphine and an oxygen machine are working in tandem to lessen the suffering in this regard.

The hospice staff from Capital Caring has been amazing. They have genuine care for So Young. The tragedy of her death at such an early age is not lost on them. They are top-notch professionals who clearly put their hearts into their work.

Thanks to everyone who is praying for So Young, commenting on the blog, writing encouraging emails, visiting, bringing meals, providing rides for the kids, etc., etc. People continue to do so much for us. We are so blessed by you. We owe you a debt we cannot repay.

Turn for the Worse
February 23, 2013

From James:

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” — Romans 8:28

I was reluctant to write this post, since I’m not sure of the correct forum through which to convey this kind of information, but since we’ve relied on the blog so much until now, here it goes…

So Young has had some breathing difficulties over the past couple of days. Her food and fluid intake has been steadily decreasing. Last night we couldn’t wake her up, but actually she did eat some apple sauce and a small amount of fluid while seemingly asleep. She has shown more signs of agitation than in the past, which may be the result of pain or discomfort she is feeling or impending death. We don’t think she has brain tumor-related pain. It would seem to be only pain related to laying in the bed for a long time.

The hospice nurse visited yesterday and said he thinks she could go at any time. He believes she has taken a turn for the worse. This is something that experienced hospice people can see in the face and eyes of the patient. I looked at her, and I do see a darkness around the eyes. Her face is slack. Her eyes, when open, have a vacant quality to them.

Typically, terminal brain tumor patients eventually fall asleep and can’t be woken up at all (or for very long) and eventually die in a coma-like sleep after a few days. So it would seem that So Young is close to death, although it is also possible she will suddenly bounce back or last a while longer in a diminished state.

I am giving her morphine for pain and medication to ease her anxiety, as needed. I am putting her on oxygen a lot more. I’m trying to feed her and give her liquids, but not so much that I risk her choking.

Before she fell asleep, So Young was trying to say things every once in a while, but nobody could understand them, and it’s impossible to know if they would make any sense if we understood them. She seemed to have something to say. We just didn’t know what it was. I think the way she has lived her life stands on its own. No words necessary.

I ask for your prayers for So Young, that she would not suffer in her death. It has been a blessing that she hasn’t had much pain so far.

Of course you know I covet your prayers for the girls and me, our family, and everybody who is facing losing a dear friend.

Don’t be sad. I think So Young is going to be a lot happier where she is going. She always talked with great anticipation about going to heaven, more than anybody I knew. She seemed to have a more vibrant notion of it than I ever did, and it always put a smile on her face. I don’t know why God is taking her so early. I just know she will be delighted to be with him when she gets there.

If you feel discouraged, I encourage you to read this past blog post from So Young. I was a real encouragement to me when I read it a couple of days ago. It just shows me that So Young had reached a place of contentment in her life that can seem so elusive to many of us. It gave me some peace.

God Is Good All the Time

I’ll post again if something changes.

More Sleeping, Other Symptoms Persist
February 17, 2013

From James:

Short Version: So Young is sleeping even more, with slightly decreased food intake resulting from tiredness. Other existing symptoms persist.

Long Version:

So Young is sleeping a lot and won’t wake up at all unless we wake her up, for the most part. I would say she is sleeping 18-20 hours per day now. We wake her up three times a day for meals and medicine and to change her diapers and bed linens. On weekdays, she wakes up for visits from the hospice nurse’s aide and to “entertain” visitors. I’m sure it isn’t all that entertaining, because these days she often sleeps while visitors are present and usually doesn’t greet or talk to them.

Yesterday, So Young was so incredibly tired that I was really worried about her. It was difficult to wake her up, and she ate about 1/3 of what she usually does per meal. There are bad days where I become convinced that this is the end and she has only a couple of days left, if that. I remember that I once thought she wouldn’t make it past Christmas, and here we are past Valentine’s Day.

When So Young is eating, she is usually very tired and sometimes seems to be sleeping. She eats soft foods only, no big pieces of meat, bread, or other things that may be hard to swallow. I keep putting food in her mouth, and she chews it slowly, sometimes seeming to fall asleep mid-bite. One feeding can take a long time. One time I was watching her and thinking that each bite was taking an incredible amount of time, so I counted the chews: 63 on that occasion, and it wasn’t even a big bite or something that was hard to eat.

So Young’s appetite is still good, but she is eating maybe 1/4 to 2/3 less per meal, depending on how tired she is. She also loves the smoothies I am giving her, so it isn’t hard to keep her drinking fluids. Smoothies were one of the most important additions to her diet when I started giving them to her a few weeks ago.

As a side note, people tell me that eating well is correlated with how long cancer patients have left to live (i.e., a good appetite means more time left), but I’ve done some research, and this doesn’t appear to be a clear-cut correlation for brain tumor patients. Unlike cancer patients who have tumors that affect other organs, brain tumor patients can have good appetites until very close to their passing, I would imagine since their condition relates to brain function rather than organ function.

These days, So Young usually doesn’t open her eyes all the way when she is awake. I have also noticed that she seems to be having more difficulty answering questions. For a while now, she has been getting confused by complex questions that are open-ended or require that she select between two or more options. So if you say, “Do you want to stop eating, or do you want to keep eating?” she won’t answer, because it is too complex. You have to say, “Are you done eating?” But even simple questions seem to be stumping her these days. I can’t tell if she is unable to process them, can’t find the words, or just doesn’t understand. You can ask her an easy, yes-or-no question, and she will simply look at you blankly.

Today I encountered the first case of her not seeming to know who I am. I came into the bedroom to bring her breakfast and knelt down by the bed to talk to talk to her for a little bit as I usually do. She immediately asked me, “What’s your name?” I told her my name and asked her if she recognized me. She shook her head no. I told her that I am her husband. Later, I asked her if she recognized me, and she shook her head again. But after breakfast, while I was changing her, I asked a third time who she thought I was, and I think by now she had learned and said, “James. My husband.”

She continues to hallucinate, sometimes seeing scary things. The other day I asked her what she is looking at, and she said, “Corpse.” This sent chills down my spine. I told her not to look over there and that it isn’t real, although usually I’ll humor her because they aren’t scary and I don’t want her to think she is going crazy. Later she asked (about the corpse), “Why is she here?” But generally the hallucinations are little boys and things like that (“One people, two people,” as she said today about a hallucination).

I am still off work, so I do most of the caregiving. I have been off since about mid-December. Somebody asked me what I do for a living the other day, and I had to pause and think about it. I was going to say, “Nothing. I stay home and take care of my wife.” But of course that isn’t true.

Mom comes every afternoon to be there while the hospice nurse’s aide is here for bathing, since Mom helps her out with that. Mom also does lots of chores around the house and gives me a chance to leave the house for mental health breaks or to run errands, since on weekends (unlike most families) it is rare that I get a chance to leave the house at all.

I may return to work very soon, at least part-time, because by law I only have three months of unpaid leave, and I don’t want to lose it all too soon and not be there when So Young passes. It is difficult to say how long So Young has left. It could be a few days, weeks, or even months. Generally, brain tumor patients sleep an ever-increasing amount, eventually falling into a deep, coma-like sleep and then passing. It is difficult to gauge when this will happen, which makes the timing of my decision to return to work difficult. Still, the most physically demanding part of the caregiving has probably passed, since she doesn’t leave the bed anymore, and I spent a lot of time with her when she was more mentally coherent.

February 5, 2013

From James:

It is likely that So Young will be bedbound for the foreseeable future. She isn’t able to stand at all anymore, even with assistance. Both legs just can’t carry weight. She used to be able to stand  with assistance and was especially strong in her left leg. Over the past couple of weeks, she has grown increasingly weak, even as we attempted to continue the same routine that had been taking place for quite some time. We would help her go from the bed to the wheelchair, from the wheelchair to the toilet or shower chair, and then back to the wheelchair and back to the bed again. That’s several sets of exercise per day, standing and sitting, standing and sitting, over and over again. She continued this routine for a while but just started to lose strength.

It is clearly tumor progression. I can’t attribute to anything more innocuous like atrophy, because the routine never changed. She was always getting the same amount of exercise every day, except for days when she would venture out of the house and get still more. She just grew weaker. Both legs have gotten weaker, it seems. Her left hand is literally shaky, and it is weaker. For example, the other day, she could not lift a glass of juice to her mouth with her left hand (her “good” hand — the right hand doesn’t work at all) because it was too heavy, so I have switched to lighter weight plastic cups.

Being bedbound is significant because it greatly affects So Young’s quality of life. It means that she won’t be able to leave the bed to go to the bathroom, let alone to leave the house. I can’t emphasize enough how significant not being able to visit the bathroom is. It’s a matter of dignity for her and hard work for me (mostly), but there’s no alternative when we weigh being bedbound against the risk to her safety. Right now, the hospice aide is able to use special techniques to bring her to the shower via the wheelchair, but it is extremely difficult and may not last long.

So Young’s world is getting smaller, but from her perspective, it doesn’t seem that she wants it to be otherwise. She has become increasingly resistant to leaving the bed at all. Any suggestion that I should take her to the bathroom has been met with a resounding “no” more adamant than before. She also sometimes gets confused and thinks I am taking her somewhere, so she questions me about it like it is something unreasonable that she needs to put a stop to.

In general, So Young doesn’t seem to know where she is anyway. Twice she has said she wants to go home. I was able to deduce through further questions that she wasn’t speaking metaphorically, either. I have asked her where she thinks she is now. Once she said she thought she was in “the place where they give you snacks.” This isn’t far from the truth, actually, because she basically only eats and sleeps, and somebody is always bringing food to her in the bed, usually me. On another occasion, she said she thought she was at Johns Hopkins. I could see that, because we have some hospital-like apparatus in the room and a bed that inclines automatically, unlike a “normal” bed. Also, over the past few days, she has been unusually tired, sleeping all day except for meals, and even during meals, feeling extremely drowsy and even falling asleep while chewing.

January 25, 2013

From James:

So Young’s doctor predicted a couple of months ago that, barring a miracle, she would “slowly shut down.” Most recently, she seems to be getting weaker physically, and she is having more incidents of choking. The short-term memory loss continues to be a problem, along with disorientation and the inability to find words. She was always a great conversationalist, able to speak comfortably with anyone and listen well. Now she hardly talks.

When she does get chatty, however, she asks a lot of questions. She always asks where the girls are and if “Nanna” (my mom) is here. She asks if it is Sunday a lot. (She has no real sense of time anymore.) She also asks bizarre, nonsensical questions. This is different from not knowing the right words. She has some concept in her mind that makes sense to her, most likely because she is imagining something that isn’t real, so she asks about it. “Where are the men that run around?” “Are you going to put up the bales?” On and on almost every time she talks to me. They can actually be pretty elaborate. I play along, because I have learned that if I act like I don’t know what she’s talking about, she gets angry, because of course I should understand. I don’t think that other people encounter this very much, because with them, she mostly answers yes and no questions, stays pleasantly quiet, etc. With me, she is all questions.

The hallucinations continue. She saw a “scary image of a girl” next to her the other day. I told her not to look over there. Yesterday, she saw a bunch of children in the room, little boys. I asked her what they were doing, why they were there, but she didn’t know. I told her they are probably angels. Today she was staring upward as if transfixed. I asked here what she was looking at, expecting an outlandish explanation. “The ceiling,” she said.

Her long-term memory appears to be diminished. This is new within the last couple of weeks. For example, she doesn’t remember my birthday. She can’t reliably remember the names of her daughters, having guessed wrong or been unable to recall them at all the last three times I asked her. That could of course be anomia, so perhaps a better example is when I was playing a couple of songs that have had a lot of meaning for us, especially early in our relationship.

I played Barber’s Adagio for Strings for her. I asked her if she remembered it, and she said yes. I told her that she played it in orchestra in high school. Does she remember what instrument she played in high school? “All of them?” she guessed. She played the violin and was quite good at it. I played our wedding song, Grow Old with Me. I asked if she remembered why the song was important. Does she remember dancing to the song with me? When did we dance to the song? “Valentine’s Day?” Another guess. We danced to that song at our wedding. I encounter examples like these daily.

I don’t often cry about our situation, but I wept while the songs played. Something about listening to a song that so beautifully walks between joy and sorrow like Adagio or that is so ironically hopeful like Grow Old, contemplating memories of the days when she was whole, and looking at her lying there diminished by disease, caused me to feel the depth of what we have already lost. It is these juxtapositions that hurt the most, like when Shannon came upstairs crying yesterday because she had heard an old voicemail on her cell phone, “from when Mommy could talk.” I listened to it, and it made me cry, too.

So Young in June

My Beautiful Wife About Seven Months Ago

I want to thank everyone again for all of your support of us, emotionally, spiritually, financially, and otherwise. The outpouring has been overwhelming in a good way. Someone recently pointed out that kindness isn’t the right word for it. It is love.

Ending Treatment
January 9, 2013

From James:

Today, I asked So Young what my name is. “William James,” she said.

“OK, what is my last name?”

James,” she said, insistently.

“Oh, OK. So my full name is ‘William James?'”

“Yeah. William… A… James.”

So Young and I share the same last name. She just doesn’t remember it.

Yesterday, she literally slept 23 hours. She was awake for more hours today (four so far), but after her visitors left yesterday, she fell asleep and only woke up for two thirty-minute meals. Her sleep varies, but it always far surpasses a healthy person’s sleep.

I give these very recent examples to illustrate the point that So Young has been through a lot of treatment so far and seen no results. I know that I am not the only one who has wondered why, if the treatment is not working, we are continuing with it.

The answer is that we are not. Johns Hopkins called today and said that they will not treat So Young anymore for her brain tumor. The tumor is inoperable, but she underwent the lifetime limit of radiation to the brain at Johns Hopkins. After the recent regrowth, she went through several draining rounds of chemo. And all the while the disease progressed. It seems like I am reporting some new symptom, procedure, or medical crisis weekly. I am continually surprised, but unfortunately the hospice people are all too familiar with what is going on.

I don’t have a lot to say about this news other than that it saddens me and confirms what I was already thinking.

Here are a few things I ask of anyone reading this blog entry:

  • Please don’t tell So Young. It’s strange, I guess, to have a “public secret” like this about someone, but it doesn’t do her much good to know it at this point, particularly in her current mental state. Also, don’t talk about it with me when she is around.
  • Don’t approach me with advice about a cure you believe in or heard about somewhere. It is unhelpful at this point. Trust me, you are not the only one who has thought to do this, although every miracle cure is different, and I have been told of many.
  • Don’t stop praying for So Young. Maybe only a miracle can save her at this point, but miracles are not beyond God’s grasp.
  • Pray for the girls and me as we grapple with So Young’s ongoing illness and its ramifications for our family. It is incredibly difficult to deal with.
  • Don’t give up hope! Even if the worst happens, remember that we hope in God. As believers, we face a common destination, and I know that So Young in particular will receive a great treasure there whenever God takes her, along with a completely restored body. I want to live a life like hers, poured out for others and living for an eternal hope.

Wipe Away (Revelation 21:4)
January 5, 2013

From James:

Short Version: We’ve had to alter So Young’s diet to avoid more choking incidents, since she aspirated a second time on Thursday. This may be a sign of further disease progression. She continues to be in cognitive disarray.

Long Version:

I think that the title of my January 2 post minimized the situation a bit. The “health event” of that day (So Young’s swallowing problem) has turned out to be more serious and longer lasting than I originally thought. She had a second choking and aspiration episode the next day, on Thursday, January 3. She was very distressed, but at least I had the medication I had used the previous day and knew to use the oxygen machine. She was on oxygen for most of Wednesday and was exhausted. She slept through lunch on Wednesday, and for dinner she could only eat her mashed potatoes and cranberry sauce and struggled greatly to swallow small pieces of meat.

On the recommendation of John, our hospice nurse, So Young started on a diet of pureed food only Thursday morning, which I am loosely interpreting to mean “mushy food.” Also, we started thickening her drinking water and most other liquids. I grind up her medicine and administer it to her mixed with honey. These changes seem to have made eating and drinking easier for her, although she still has episodes of almost choking. It seems that a large part of the problem is water itself, which causes many more choking incidents than you might think. John said that we will keep her on this diet unless she “bounces back.” He said that this is a normal and expected part of disease progression.

So Young slept most of Wednesday and Thursday. She was awake more on Friday, but most likely that was because we had a lot of visitors on that day. On Friday night, after a long late evening nap, she was unusually chatty for a couple of hours, but almost everything she said betrayed the cognitive dissonance that is going on inside her: unawareness of time despite many reminders, anomia, nonsensical questions that showed a basic lack of understanding of what was going on around her. She was similarly alert but incoherent today, at one point for example asking me, “Where is James?” I told her I am James, and she said, “No you aren’t!” She said that we should get a dog (we just got one a few months ago), and she went on and on about this until I brought the dog to her. She tried to eat a piece of paper towel and mistook a stuffed animal for a water bottle and started “drinking” from it.

She also seems to be hallucinating occasionally. She will see a little boy in different places around the room, or this morning, a “scary mask.” Then she will say, “Now it’s gone.” She isn’t afraid of them.

As I’m writing this, I realize that some people who have seen her only occasionally or on a good day (or hour) may think I am exaggerating. She is alert sometimes. She performs well with simple questions that don’t require much analysis. She is polite and recognizes people. Sometimes she speaks clearly and strings together a pretty good series of thoughts. She laughs at jokes, funny and unfunny. That doesn’t change the fact that she wasn’t this bad cognitively a month ago. My job is to observe the bad parts that, if ignored, put her in more danger than “thinking positive.”

So Young asks for “forbidden” foods a lot now. When I reiterated this morning that she can’t eat bagels at the moment, she said, “You just crushed me.”

I got a little teary-eyed, because I feel bad having to turn her down when she has so little already.

Then she said, “Wipe away.”

“Wipe away what?” I asked.

Wipe away. All the dead stuff will be gone. And then I’ll be a new person and can eat all that stuff. Right?”