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.


11 Responses

  1. James and SoYoung,

    I am praying for God’s strength to be with you, for him to put His protective arms around you, for Him to comfort you, for Him ease hurts, for Him to grow you through this experience, for Him to be with your daughters, for Him to ease your anxieties, for Him to catch your tears, for Him to take away any fears, for Him to give you understanding, and I’m just praying.

    Hugs to both of you and the girls and extended family,

    • Thanks, Heather! We really appreciate the prayers and you being there for us.

  2. I am praying for you James and for the girls to be wrapped in Gods love, with all the power and strength that he has given to you, to keep walking thru this journey. So Young is ready to go home soon to where there will be no more pain and sickness. I pray that our God will comfort you and take away all fear.
    Love to you

  3. Updated the post a bit because I got my right and left confused. Happens to me all the time… She can’t use her right arm. Her left arm is shaky. Must have been confusing to read.

  4. James and Ruby, I wish you strength. Lots of prayers, thoughts and love I send your way.

  5. This is indeed a difficult time, but this is not the end. Let’s continue to pray without ceasing and lean on Him for all things.

    Love, Sis

  6. We are with you James, and pray for you, So Young, and the girls.

  7. Will continue to keep So Young, you and the girls close in my prayers and in my heart. Debby

  8. We are praying for you all, every day.

  9. Dear James & So Young
    Threw your struggle together the love you have together is beautiful, thank you for writing too share the love you all have with the rest of us. We love the both of you, we are praying for the both of you.

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