Wipe Away (Revelation 21:4)

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?”

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12 Responses

  1. It’s so hard to read about Ruby and her struggles. And, needless to say, about how you and the girls must be feeling. I think about all of you often and send prayers your way. Thank you for keeping us all informed.

  2. I have been praying for your sweet family, asking God to make His loving kindness known to you. And for you James, that you might sense His presence along side you as you lead So Young home… I am reminded of Veronica who offered Jesus drink and a cloth as He trudged towards death. You have been that Veronica for your lovely wife in her battle. God’s grace is truly amazing. Thank you for your witness.

  3. James,
    Thank you and thank So Young for reminding us of “wipe away”. We pray for your continued strength and peace and hope that never fails.Please give So Young a tight hug from me…we are so enlightened by her as she sees life in a way that none of us have. I have her picture with the girls on my refrigerator. Thank you for witnessing to us.

  4. Oh James. I can’t imagine how it must have discouraged you to not be recognized by your beloved. I hope you can take comfort in knowing that even if her brain wouldn’t let her recognize you, you are still the man she wants most beside her.

  5. Thank you and So Young, James, for teaching us all, although you do not ask to do so. May I simply repeat your Aunt Cynthia’s words that your family keep peace and strength and hope in your hearts always. We often fool ourselves concerning the nature and purpose of life, but with time and experience we see it as it is. I lift my voice to God for his mercy, his grace, his love for you and your family.

  6. …lifting up my heart to our LORD Jesus on behalf of you, So Young and the girls.

  7. Somehow, in the midst of all you are dealing with, you continue to inspire and lift up all of us who read this. I continue to thank God for your witness and to ask Him to stay close to you, So Young, and your girls. May He pour out his grace upon you.

  8. Your struggles remind me of my dear father-in-law who like sweet So Young always found light in the darkiness…and hope where there seems to be so little…wipe away So Young so you can eat all that stuff….love to all of you.
    Debby

  9. Dear James
    I ask you to consciously remind yourself (and anyone sharing your experiences) of being “surrounded by so great a crowd of witnesses” as described in Heb 12:1.

    So Young is doing what we do: I am pretty sure Shakespeare has a pithy monologue about “The 7 Ages of Man”. Regressing to valuing to warmth + satisfaction, not much interested in the feelings or futures of others.

    Moses’ prayer Psalm 90 is one that helps me a lot to pray through when things seem way out of control.

    So teach us to number our days that we may gain a heart of wisdom…

    Love + prayers,

    Ellen

  10. “For I am the Lord your God who takes hold of your right hand and says to you, “Do not fear: I will help you.” ISAIAH 41:13

    Praying for you and your family.

  11. Thank you, James, for bringing to us these precious moments. What you share with us continue to touch us and shape our own lives. Responses from your friends and family too have taught me much and strengthened my faith. I continue to pray for peace and somehow bittersweet joy in your and your children’s hearts. I am reminded of a poem that reads: “The deeper that sorrow carves into your being, the more joy you can contain.” May your joy in having So Young in your life fill the depths of your sorrow and overflow.

  12. James,
    When So Young can’t organize her data well enough to know that you are you, it may be more distressing to her than it was to you, horrible as that was. Since she is sightless, it is so remarkable that she picked up on your tears + brought home the connection that she knows the place where the suffering + tears get remedied w/ the exact quote from Revelation. When she says she doesn’t recognize you, can you move in closer for a snuggle + make her feel the wedding band on your finger?

    It is a fine line between giving a very sick person “peace + quiet” and isolating her / him. Even if one could ask to jump back in the communal bed, which I doubt that she could formulate, most people feel too ashamed or that it is too much of a demand to ask.

    You, no doubt are going through the misery, too, of waking in the dark, deprived of the reassuring warm breathing beloved next to you.

    When she asks for you, the asks for the dog, my guess is that she could recognize you by the way you hold her + whisper “sweet nothings” into her ear..

    Ellen

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