Thursday, January 4, 2018

An Ode to Sleep

Oh, Sleep! Oh, Sleep! What a gift you are from God!
You restore me physically;
You restore me emotionally;
You restore me mentally.
Without you, my sense of humor vanishes into thin air.
My body is a burden to me, and my breathing is painful.
My steps are halting, and my duties are overwhelming.
I know I am not equal to the task without you,
And I face my day with great trepidation
Knowing there will be no rest found in it for me.

Oh, Sleep! Oh, Sleep! What a gift you would be from God!
You elude me while he dozes;
I feel your onset, but he startles awake
And sits bolt upright on the edge of the bed, fidgeting.
You vaporize as he wanders around the room,
And I lie awake, ever vigilant, until he returns.
He requires coaxing to lie down as he sits in a daze, confused.
Finally, finally, his legs make it under the covers,
And he snores immediately, but only for a little while.
You elude me while he dozes and approach as he startles awake.

Oh, Sleep! Oh, Sleep! How I long for you! How I need you!
How pleasant it would be, what a gift it would be
If only you would arrive as quickly for me as you do for him,
And if only you would stay awhile so both of us can rest.
Ah, Sleep! There you are, like a cloud of vapor enveloping me
As I drift off into a dream, a stressful dream with no restoration;
A dream with no beginning, no resolution, just confusion.
Alas, Sleep! His footsteps approach and I cannot embrace you.
He stands over me to announce his presence, "Hello? Hello?"
Oh, Sleep! Please. I am not ready for another day without you.

Wednesday, January 3, 2018

A Rough Patch

I won't lie. The last few months have been a very rough patch for us. Sundowning became intense, started earlier and earlier, and lasted longer and longer. As confusion led to agitation and agitation sometimes led to aggression, and with sleep also being at a premium, I was exhausted physically, mentally, and emotionally. Ready to throw in the towel, I began to research placement options in earnest so as to be ready rather than desperate.

My husband is a veteran, and so I had already checked with the "local" (an hour away) California Veterans Home. It is beautifully situated in the Wine Country, but I did not like the housing units I was shown on the tour at all. It isn't just that they weren't renovated and that the restroom was way down the hall. I have a sensitive nose, and we'll leave it at that. Maybe I was just shown the wrong housing unit! So when I was told by the placement officer to basically forget it because nobody had come off the very long "wait list" in the three years she had worked there, I wasn't all that disappointed.

Instead, I placed my husband on the "wait list" for the Veterans Home in his home town, a beautiful and new facility three hours' drive from our present home. The wait is expected to be three to five years there. Cost for his level of care will apparently be 70% of our income, and the state will come back against remaining assets at end of life. This is very much like MediCal or whatever state program might be in place in your area, except you don't have to be destitute (yet) to qualify. It used to be that the monthly cost was $2000 or the veteran's Social Security check, whichever was less. Not so now (although for single vets whose only income is Social Security, it's a viable option), nor is there a payment cap. I include this information only because, well, you might be wondering for your own reasons.

So I started researching "private pay" options locally and planned to place my husband in a memory care facility after the holidays, all the while continuing research for a more affordable option, if any. This means we may in all probability be forced to run through our savings and investments up front, but our remaining assets, if any are left at end of life, will hopefully be unencumbered. It is a rock and a hard place. It also is what it is.

However, miraculously, a change in medication and subsequent adjustments in dosage have helped his sleep pattern a bit and kept him calmer. I've also arranged for more hours from our caregiver. For now, what's left of my sanity is being preserved. Or maybe I'm just learning to handle things better. We still have hairy moments, of course, but for the time being I'm getting at least some rest and feel more at peace.

I am not under any illusions. Every one of these plateaus has been followed by a steep decline, and there's no rhyme or reason to it. But it's good to feel as though I have a small reprieve. Even if it's only for a month or two. Or a week or two. Or a day or two.

Meanwhile, the search continues.

Monday, January 1, 2018

Happy New Year!

Well, here we are. It's the start of a brand new year. Believe it or not, I am optimistic and hopeful today in the sure knowledge that no matter what, everything will be all right. Somehow. Because God is good, He loves us, and His Presence is with us in good times and in not-so-good times.

My dear husband seems to be waking later these days. This morning about 11, he wandered into the kitchen. He was wearing jeans, a flannel pajama top, and my "chef's apron" from Cafe du Monde in New Orleans. A bit eclectic, I know, but whatever. I choose my battles differently these days.

After a while, I suggested pleasantly that we both go to the bedroom and pick a different shirt. Smile. Off we went. I removed the apron without incident or complaint. I unbuttoned and removed the pajama top, replacing it with one of his favorite denim shirts. I noticed that the jeans were awfully tight, though. Was he wearing a pair of mine by mistake? Had he gained ten pounds yesterday? No. It turned out he was wearing two pairs of jeans. It was a bit of a battle, but I managed to remove the outer pair in spite of his vehement protests. He does not like to undress.

As I folded his pajama top, I realized that the bottoms were nowhere in sight. I looked in the closet, in the laundry hamper, under the blankets. Nothing. And that's when it occurred to me that he was still wearing them. Under the jeans. No amount of cajoling would convince him to let me remove his jeans to get to the pajamas, however. Ah, well. It's coldish today. I guess pajamas are just like long johns, in a way. Right?

Your continued support, prayers, and encouragement mean more and more to me each day. Thank you! May the new year bring you and yours health, happiness, and prosperity. Happy 2018!

Saturday, December 16, 2017

I'm Sorry for You

Twice this week,
During stressful times,
Angst-filled times,
Frustrating times
Full of your agitation and anger,
You stopped mid-rage.

The lights came on.
You breathed in sharply.
Your eyes cleared in comprehension.
You looked at me with compassion.
Just briefly.
And you said,
"I'm sorry for you."

Thank you.
I love you.
I care for you.
You are my world.
Strange how this disease
Has brought us closer,
Yet distanced us.
I'm sorry for you, too.
My heart breaks for us.

Christmas Pub Crawl

Image may contain: 2 people, people smiling, people sitting, hat and indoor
Last year's Crawl
Last night was the annual Christmas Crazy Hat Pub Crawl that's organized by a friend. I look forward to this fun evening from one year to the next. It's a chance to make merry, relax with friends, and renew acquaintances. There were six or seven places on the agenda, with the evening due to culminate at the Vet's Club for food, games, and camaraderie.

My dear husband had a bit of a rough late afternoon with sundowning, but I dolled myself up and we donned our party hats anyway. I prepared a plate of Christmas cookies, and off we went. I hoped rather than believed for the best, and he settled down while we drove downtown. I breathed a sigh of relief. Hope springs eternal.

I was so looking forward to the crawl! We went to the first stop and waited for the group to arrive. It was probably the first time in my life I've been early for something. We ordered beverages. I tried to explain the situation to the gentleman sitting next to my husband trying to make conversation, but he paid no mind and proceeded to tell us about his lonely and miserable existence. Okay, then. I'm used to this kind of thing, so I took it in stride. He was encouraged and feeling better by the time my husband abruptly stood up and said, "Let's go!"

I do understand that my husband thinks it's time to go if his beverage is gone, even if I haven't finished mine yet or even started it. Yes, this is irritating to me, but I'm getting used to it. Of course, just as I get used to something, it changes. Anyway, I didn't want a scene to ensue, so we wished everyone well and walked to the next stop, about a block up the street in the crisp December air.

I discerned that my husband had to use the restroom (I'm getting pretty good at reading his body language), so I stood outside the door in case I was needed. And here he came, highly irritated, unable to fasten his jeans because he was trying to tuck in his t-shirt, shirt, a winter sweater, and his sweatshirt. Good thing I was close by. There was nobody else in the restroom, and I was able to coax him right back through the door instead of into the dining area. Disaster averted. But naturally a gentleman walked in just as I was zipping up my husband's pants. I can't imagine what he must have thought, but we all had a good laugh, which is a good thing. I needed one.

We joined our friends in the dining room, but my husband just wasn't interested. "Come on! Let's go," he demanded as I tried to make small talk. He seemed impatient, edgy, fidgety, agitated, and disoriented. He wanted to go home. Rather than trying to make the best of things, carrying on with the crawl in the hope that things would get better, I decided to call it a night. Wisdom is the better part of valor, they say. Shortest pub crawl ever.

It's sad to realize that evenings out, though they have been very difficult for a long time, are now probably a thing of the past. Just like that. Another loss in an endless string of losses, another disappointment in an endless string of disappointments. I'm trying to think of something redemptive to say, but I can't think of anything, so...sigh.

Tuesday, December 5, 2017

Santa Claus

It's almost Christmas again, that time of year when memories of other holiday seasons pop up that are unexpected but not necessarily unwelcome.

Last year, we were doing some last-minute shopping at a crafts store. The lines were long, and so there was a certain amount of trepidation about how the experience was going to go. Would my dear husband decide it was time to leave, right now, just before our turn with the cashier? Would a candy bar magically appear in his pocket (Why do they have candy displays at checkout counters?!)? Would he make a rude remark to the woman in front of us in line? These might seem like small things to you, but believe me when I say they pile up like straw. When you get to the last one, well, it isn't pretty.

But none of those things happened. Instead, there was a somewhat fidgety little girl and her mom in line behind us. The child was looking up at my husband shyly. It occurred to me that she thought he looked like Santa. Which, to be honest, he did. Except not as, uh, robustly composed.

Unable to resist the temptation, I smiled knowingly, leaned close to her, and whispered, "Yes, it is! Shhh...don't tell anyone. You see? You never know where he'll be. He's checking to see which children are naughty and which are nice. I would say you're being very nice indeed!"

Her eyes sparkled and widened, and her smile, well, what's more beautiful than a huge smile on the face of a small child? She was so excited! Hardly able to contain herself and with obvious effort, she stopped fidgeting, took her mom's hand, and was quiet as a church mouse. Her mom, having caught the whole exchange (of course), was highly amused and mouthed a quick "Thank you" to me.

I wonder, this holiday season, how many parents are standing in line with their fidgety little ones, exasperated, stressed, and wishing the time away? Perhaps Santa is watching! You never know where he'll be...

Merry Christmas!

Saturday, December 2, 2017

Thor. Or Whatever.

We're driving home from the theater, where we've just seen "Thor." He wasn't very engaged in the film, even though there was plenty of action and lots of computer graphics. And Led Zeppelin tunes. He loves Led Zeppelin and was swaying to the music.

The theater was crowded, of course, so I spent quite a bit of time making sure he didn't disturb others with unwanted comments or attention, as he is wont to do. He kept trying to pick something up from the floor. It was a shadow. All in all, it went pretty well, but I did have to wonder why I'd spent the money. However, none of that is the subject of this post.

So, we're driving home. He looks at me and asks, "Where do you work?"

"Wow!" I think to myself, "An actual question that makes potential conversational sense!"

I respond, "I work at home." I pause and add, "How about you?" I'm hopeful that he'll say something about the company he worked for, or that he doesn't know where he works, or that he doesn't remember, or something...anything...that would indicate understanding and engagement. Silly me. He doesn't answer. I ask again. He points to the hill we're driving past, "There's people up there and walking around and taking you up there and all that stuff." Squirrel.

Okay. But there are no people up there, walking or otherwise. Maybe it's a loose connection from "Thor"? I go along with it, because there's no point in pointing out the obvious. My head is getting accustomed to these letdowns, but my heart feels the punch. Still.

Does this post seem disjointed? Welcome to my world.