More Sleeping, Other Symptoms Persist

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.

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11 Responses

  1. You are in my prayers. – Andrew Kim

  2. This is what, as physicians, we call “the long good-bye.” You are standing vigil, James. And in this lengthy farewell you continue to be His light. Remember those who stood at the cross of Jesus while he suffered? Even our Lord experienced a sense of eternal abandonment from God in the moments of intense suffering on the cross. And then He commended Himself to God… No matter how alone you may feel as you watch So Young, please remember that Jesus experienced a deep feeling of aloneness also… And because of His suffering, He knows just how you are suffering. He — and we — are with you in this very difficult time.

    I thank you, once again, for the privilege of sharing this very personal journey with you and your family.

    Pax Christi.

  3. I’m there spirit bro.

  4. There with you in prayer, good friend. You are a blessing to all you know and especially to So Young and your girls.

  5. I failed to share this with you but our “neighbors” know you guys. As I gave them an update about a week ago on what has been happening and redirecting them to your blog, I have also been able to share your/our eternal hope, and faith in God’s restorative abilities.

  6. I don’t have the words, but I am praying for God to give you strength, endurance, and comfort. You are always my waking thought and prayer.

  7. Thank you for your update, James. I owe her a visit, and this has helped me make arrangements to book a flight.

  8. Thank you James for allowing us to be a part of your precious family’s journey. It gives us a glimpse of what has become your family’s “new normal” and how faithfully your family has trusted God through the storm. Praying for So Young and your family daily that you all would be comforted by His loving arms.

  9. Thank you, James, for your gift of letting others know what is happening. We continue to pray for you all.

  10. Thinking of “Ruby” a BPG and your precious family always.
    Debby

  11. All our love- Aunt Sissy

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