The Comeback Kid

Weird things are happening with my husband's body now that he's been completely bedridden for a while. His legs and feet are stiff. He can bend his knees, but not on request. He can't really use his hands much, and the fingers of his right hand are swollen, tight together, curled under, and unable to be straightened without causing him obvious pain in spite of the routine administering of pain medication. His hands and forearms, uncovered, are sweaty and hot. Meanwhile, his feet, covered with a sheet and light blanket, are ice cold.

The hospital bed is adjusted to just the right angles so his legs and head are elevated. He is turned regularly and ever so carefully to avoid bed sores. Pillows are placed here and there to relieve pressure between his bony knees, under his legs, along his side. He is changed regularly so he will be clean and dry and as comfortable as possible. The hospital gowns I purchased for him are being put to good use.

In spite of the attentive care he is receiving, a foul-smelling fungal infection has developed between the fingers and on the palm of his strictured right hand. Medicinal powders are being applied religiously to clear that up, and a dry washcloth is rolled up and delicately inserted in the curve of his fingers and palm to absorb moisture. He neither holds it nor releases it. It's just there, unless he pulls at it with his left hand. He sometimes raises his left arm as if reaching for something, but not his right arm.

The hospice nurse visits more regularly, twice a week instead of once. But, increasingly, the on-call nurse is summoned to the facility to address something or other that has popped up. He's been eating most of his meals for the past couple of days, and drinking. He was awake for a while today. When his eyes turned in my direction, it was like he wasn't seeing me except once or twice, when he seemed to be wondering who I was.

Seeing him like this daily is very difficult physically and emotionally. The nurse gave me a flyer yesterday. It's about what to expect as the end of life approaches. Nobody is encouraging me to think this final process will be lengthy, but it's possible. Anything is possible. But that doesn't mean it's likely. My consolation is that my husband is more than likely unaware. He is slumbering, being looked after, and showered with love. And when this is over, he will be healed and whole and in the presence of the Lord. Soon, possibly. But not yet. He's still the Comeback Kid.

The Will to Live

January 13, 2019

There are some things that are just basic instinct. For instance, a baby will latch onto anything near his or her mouth and start sucking with all the power of a shop vac. Just ask any new mom whose little one has latched onto the wrong spot! Opening your mouth when being fed, taking a bite, chewing, swallowing. Basic things that will eventually be forgotten should the disease follow its natural progression. But let's not go there right now. Here's what happened:

A couple of days ago, my husband came down with a high fever. Since he's basically non-verbal at this point, trying to determine the cause was an exercise in futility. At this stage, what you go for is comfort. Is the person eating, drinking, resting? Displaying any signs of pain such as facial grimacing, grunting, groaning, or perhaps placing his or her hand on a body part while displaying non-verbal signs of pain?

A nurse was dispatched from hospice to sit with my husband for an 8-hour shift. She (in this case) was charged with encouraging me and ensuring his comfort, monitoring his temperature and blood pressure, communicating with the hospice doctor regarding any needed medications, and taking care of any personal needs that might arise, such as changing his incontinence briefs. Since, on this particular day, he was bedridden due to illness, this involved encouraging him to turn onto his side so the briefs and bed pad could be removed and replaced, then his other side so the pad could be smoothed and the briefs secured. One of the facility's caregivers was called in to help.

Though the bed has railings, my husband was having none of this being rolled onto his side, close to the edge stuff. It was a battle royal as his fear-of-falling instinct took over. The nurse's calming words of reassurance had no effect. He flailed, pushed, and resisted rigidly for all he was worth, and his fear manifested in a remarkable spoken phrase. It surprised all of us: "I'm going to die!" There you have it. Perfect, momentary clarity. Even at this late stage of the disease, it wasn't just the possibility of falling that was giving him the strength to fight. It was the probability of being seriously injured in that fall. It was basic self-preservation. It was the amazing, instinctive, God-given will to live.

The fever has gone, and all is well. This time. I know the day is coming, months or years from now,  when the outcome will be different. In the meantime, though, allow me to marvel once again at his strength and resilience and ability to make a come-back. My man is such a warrior!

Comfort Care

October 21, 2018

Here's the thing:  There's a big difference between accepting something in theory and wrapping your head around something that's become a reality.

You've done all the reading, so you "know" what to expect, what's coming, what's inevitable short of an absolutely miraculous intervention from God. And you think you are prepared, because you know what you've learned. But guess what, boys and girls? You are not prepared. Not at all. And there's no way you possibly can be.

You know that "comfort care" (sounds so much better than "hospice," doesn't it?) is getting closer. You know that, in your head. But when it's actually spoken out loud by the medical team, when your heart races, and your breathing becomes frantic and shallow, and your skin prickles all over, and your stomach sinks, and your throat closes, and you break out in a cold sweat, and your eyes fill with tears, and your body somehow feels disconnected from your mind -- your mind that can't think -- that's when you realize that you can never, ever be prepared.

You wonder if there's anything you could have done differently, if there's anything you overlooked or thought wasn't important, if there's anything -- anything -- that could have made a difference. But there isn't. There really isn't. You did the very best you could do, but it just wasn't enough. It could never have been enough, because there's nothing -- nothing in this world, at this time -- that could have changed this outcome.

It isn't over. Not yet. But it sure feels like defeat. I'm told I should not look at it that way, that I should think of it as just another phase, a progression in this illness. But everything in me resists this way of thinking. Acceptance has not yet made its deposit in my heart.

Even so, I must now make a decision about which hospice provider to enlist. And then the "hospice team" will do an evaluation. If they determine it isn't time yet, I suppose it won't be long before that time comes. I've read it's best to bring hospice into the picture as soon as your loved one "qualifies." That makes it sound a lot like having gone through the preliminaries and now being privileged to run the "big" race. And I guess it is exactly like that, in a way.

Hebrews 12:1