Sunday, March 18, 2012

Listing starboard

9:06 Today's project was to help Steve sit up and stop leaning on his left side through the entire church service. He leans so heavily on me, virtually passed out with sleep, that it's hard to focus on the word of God. The effect on my shoulders and back is not good at all. Every few minutes I whisper to him to look up at Pastor John or the jumbo screens, but to no avail. If I weren't sitting on the aisle, he'd topple over onto the carpet! I don't think there's any assistance my daughter and son-in-law can offer, because Steve in his leaning state would be heavy for anyone to support. I'd thought about going to the overflow room, but what would change about his left leaning in another room? At least in the sanctuary, we both feel a part of things with the Body of Christ all focused together. ..

Behold how good and how pleasant it is for the brethren to dwell together in unity! (Psalm 133:1)

In the last few months, Steve has been sleeping more and more during the day, despite sleeping nightly from 8:15 p.m. to 6:45 a.m. Unless I have him out with me in the car--where he also leans heavily to the left--eating a meal, or working around the property, he drops off. It doesn't matter if the TV is playing a favorite show quite loudly, or there's conversation, Steve can't last long. The caregivers and I try to keep him hydrated, recalling the last episodes of weakness he has suffered in the last 6 months. It's not helping.

Staggering and stumbling also result from Steve walking with a leftward lean and his head held down. He falls almost once a day, and has to be physically turned in the right direction to walk to any room in the house, out to the garage, or over to his seat in the Jeep. Sitting down, whether on the couch, dinner table, or commode, seems to be a very hard direction to follow.

Eating is getting messier and attempts to keep things neat are fairly futile. I did realize one thing yesterday: our clear glass plates are contributing to the way Steve has been putting food directly onto the table from the plate, and eating it from there. What he sees through the clear plate is the wooden table, and he's under the delusion that the plate just continues on! A patterned plate doesn't get the same response, so using solid white or a pattern, he'll prayerfully have better eating manners.

I don't expect normalcy, however, because even eating a tiny sample of fish Friday at Costco, and yogurt today at Winco proved to be overwhelming--he no longer simply imitates me or others eating around him--he just doesn't know what to do! The only time he eats in front of others now is with family or at Home Fellowship. Our group is just so loving that they don't want us to miss. I make sure to clean up the table and floor the best I can without making a scene. Our hostess, if she's anything like most women, will sweep and mop after everyone leaves anyway. (I know the feeling--I did about two hours of cleanup after serving my Mary Kay facial party guests a full breakfast yesterday. But if one has the gift of hospitality, even cleaning up afterwards can be a joy, triggering memories of blessed fellowship)!

There is a temptation to relate this latest deterioration to the weaning off of Aricept and Namenda in favor of the Exelon patch, but these three are all in the same "family" of drugs, and he must not take the pills as long as he's wearing the patch. BUT, Steve began manifesting the leftward lean months ago. My son Steven also informed me during his last visit here at home, that his cousins (Steve's late brother's sons) told him that all of a sudden things would happen to Larry, for example,  "one day Dad's left arm stopped working." Is this not the beginning of what I'm seeing? Steve can't hold anything in his left hand, even if I position his fingers around a cup, or in position to hold the handles of a plastic grocery bag. it's a shame, so hard seeing him like this. Sometimes I mentally cry out, "Is this my husband?!" No one but God hears me, and that's fine. Crying out to the only One who can have any effect of this disease's progression is pretty wise and pretty comforting as I receive His love more fully each day!

Guiding, nudging, turning, gently pulling him along in stores because he can't understand how to stick at my side his bedtime prep--all this is becoming physically taxing. It's not that Steve is oppositional; he just cannot follow directions or do anything to help himself with his own mobility or personal care. I thank the Lord for our caregivers, for keeping this decently fit 60 from having to lift and carry everything myself, Without a miracle, no one can go on like this without her body breaking down.

So I am faced with serious decisions as to increasing care, changing or increasing meds, how to handle church potlucks and meal times at home. I covet your prayers, friends. Through all of these compounding crises, I pray for Steve's safety. So far no injury has resulted from the stumbling. I trust what Jesus tells His children in Hebrews 13:5:

...I will never leave you nor forsake you.  As for guidance, hear Psalm 32:8:

I will instruct you and teach you
  in the way you should go;
I will guide you with My eye.

...and Isaiah 58:11 for a promise of love and care that I need right now:

The LORD will guide you

And satisfy your soul in drought,
And strengthen your bones;
You shall be like a watered
And like a spring of water, whose
  waters do not fail.

Thank you, Lord!

1 comment:

  1. My heart goes out to you with a definite prayer for God to guide you through these stages of the awful disease in the clear "for better and for worse" commitment of marriage.

    I think that people don't want to understand what the caregiver goes through, but He understands and was tempted at all points like we are. Life can't be normal now and I ache for you. One day I will be at this stage for my husband and one day we all will be whole in heaven--our glorious hope.

    Hugs and prayers,