Archive for February, 2013

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.

Bedbound
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.