It's Sundowning Time Again

In the late afternoon, I feel my energy flagging and my patience thinning. I want to sit awhile and relax. I am human, after all. But it's sundowning time again. He's anxious, nervous, agitated. He jumps up, starts pacing, and is in a hurry to "go somewhere."

"Where would you like to go?" I ask.
"Somewhere," he replies.
"Yes, but where?" I am hoping for a hint of what's going through his mind.
"Let's GO!" he demands.
"Okay, but where do you want to go?"
He points to something in the room. "This thing here," he says.

Okay. We go out to the car, pull out of the driveway, and drive around aimlessly for a half hour or so. At each stop sign, I ask him which way he wants me to turn. He seems to be enjoying himself a little and relaxing. I am encouraged as I pull back into the driveway.

"Finally!" he says, relief on his face.

We walk into the house and settle in front of the television for a little distraction. We've been home five minutes.

"Well," he says, jumping up, "Let's go home!"
"We ARE home, honey," I explain.
"Well, can we go now?!"

I hesitate. I am tired and need to prepare our evening meal. He impatiently opens the back door and storms out.

"Please close the door," I think dejectedly as I follow him out.

The Shuffle

About a month ago, we went for what now qualifies as a "walk" downtown. For the first time, I noticed that he was shuffling his feet a bit, not quite lifting them off the sidewalk. The sound is unmistakable. He hasn't been wearing his signature Western boots, because it's become too difficult for me to pull them off his resistant feet. But he was wearing them that day, so naturally I assumed he wasn't picking up his feet because he wasn't used to the boots any more.

The next day, off we went for another "walk." He was wearing comfortable walking shoes, but his gait was very slow...two steps to my one very slow, very short, sauntering step...and he was shuffling again. My heart sank.

I used to have to hurry along in order to keep up with his normal walking stride. And now he's walking like a little old man, huffing and puffing, barely lifting his feet. Not always. But usually.

Each one of these little traumatic moments is a double whammy for me. I'm reminded of my mom taking care of my dad, of my dad shuffling his feet, of his slow descent into oblivion. So I'm even more aware of my husband's decline. And I know there is no light at the end of this very long tunnel.

It's heartbreaking. And maddening.

Shake It Baby

Ah, the late afternoon!

Such a beautiful time of day

Except at our place

Please close the door

Go out or stay in

But please don't stand there

With the door open
It's cold outside
The heat is on

Thank you

Nervous energy
Fills the whole house

Drumming fingers
First one hand
Then the other
Then both

Drumming 

DRUMMING

Faster, faster, FASTER

Shaking out hands
As if shaking off something
First one hand
Then the other
Then both
Shaking
SHAKING

Faster, faster, FASTER
It's a wonder they're still attached

Up and down go the knees

First one

Then the other

Then both

Faster, faster, FASTER
The table is shaking so hard
It's bouncing
The drinks are flying out of their cups

It feels like an earthquake in here

I don't who needs the meds more

Him

Or me

Waiting for 7:30 to arrive
This is usually over by then
It's been going on for two hours already
Two hours to go...
Somebody help me

Hide the Silver!

Back before we knew this illness was upon us (which makes me wonder just how long this has been going on), my husband would blame our children if something went missing. But of course they didn't have anything to do with it. He would go into our daughter's room (she was still living at home) to retrieve items he thought were his, but they weren't. They were hers. I found it astonishing at the time, but now it makes perfect sense. No amount of reasoning with him would help him to understand that the item he had in hand was not his. And that is especially true now, years later.

Alzheimer's patients have a tendency to acquire things through Five Finger Discount. Kleptomania is an impulse control disorder, and folks with advanced Alzheimer's have zero impulse control. They aren't stealing in the traditional sense of the word. Rather, the item is familiar or desirable for one reason or other, ends up in hand, goes in pocket, then is squirreled away. Candy bars, water bottles, pens, magazines, tennis balls, refrigerator magnets, restaurant silverware, earrings and other shiny objects...it's all fair game.

Is it a little embarrassing to return these items to their rightful owners? Of course. But people are surprisingly understanding of the situation and appreciative of the honesty. Thankfully!

The other day, a set of forks went missing from a place setting on the dining room table. I thought he had probably picked them up and moved them to another part of the room, or to the adjacent living room. Naturally, he vehemently denied having anything whatsoever to do with it when I casually asked if he'd seen them. They weren't in his coat pocket or in his jeans pocket. I knew they would turn up eventually, and they did: by the sink in the master bathroom. How did that happen, I wonder?

All of that to say this:  If you're expecting us over at your place, or you see us walking into your store, watch him like a hawk. He's quick when he wants to be. Also, hide the silver!

Happy Anniversary

So, we've gone another year around the sun together, he and I. We were so young and bright-eyed, with no idea what adventures we would have and what misadventures we would endure together. They said it wouldn't last. My mom agreed. Even I, if I had to be completely honest, had my doubts. Who doesn't? It's a scary proposition to make those promises to stick by a person, come what may and no matter what. It's a major commitment.

Our wedding day was gray and gloomy and cold, the last day of February. And then it rained. Boy howdy, did it rain! Sheets. Buckets. Rivers. And the wind! The bridal party was delayed leaving my mom and dad's place because the front walkway was submerged below inches of water, as was the car park. Finally, unable to hold off any longer lest the bridegroom change his mind while waiting interminably for the bride to show up at the church, my mom wrapped my gown in layers and layers of dry cleaning bags. We waded out into the tempest to the waiting vehicle, my father holding an umbrella over me to protect my hair and makeup and the beautiful gown I was carrying in my arms. The gown I had designed and my mother had lovingly made for me. He mostly succeeded.

Weren't we cute?

At the church, we were unable to find an open room in which to change clothes, so that delayed us even more. Once dressed and ready, I realized I had forgotten my shoes at the house! Was somebody trying to tell me something? My older brother was so gracious in volunteering to go back and get them for me. Finally, only half an hour late, I walked down the aisle on my father's arm. I was so nervous, I was as pale as my dress. The groom looked relieved to see me. And kinda scared. That was 48 years ago.

To celebrate our anniversary, we generally go out to dinner. This year was no exception. He used to pick the restaurant, but now that's up to me. And I love sushi. I should have known this wasn't the best idea for him at dinner time, but we'd had Japanese food at lunch not long ago with no issues. Our day had been going really well, and it just never occurred to me that this wouldn't be a good plan. But even though we are not strangers to this restaurant, everything about it was disorienting and confusing for my husband.

And a few days later,
here he is using a couple
of stir sticks as chopsticks
 to eat the jelly at a restaurant.
Go figure!

He seemed to think the chopsticks were straws, put them in his water glass, and tried to drink through them. He couldn't figure out how to sip his soup by picking up the bowl. Or how to pick up the bowl. I got him a fork for eating, because obviously chopsticks weren't going to be happening.

I felt so bad. He didn't really enjoy the delicious food, because it was too complicated for him. So many things were in the little sections of the bento tray, a confusion of overlapping colors and shapes and reasons for being. The green of the salad touched the green of the wasabi in the next little section. I quickly removed that from his tray, lest he pop the whole thing in his mouth with distressing effect. The dark sauce for dipping the tempura vegetables was in a dark little bowl, the miso soup was in a small bowl of the same color, the tea was in a cup with no handle. And also the same color.

I removed items from his tray and separated the other foods to make it easier for him to distinguish between them, and I encouraged him to eat this and that, pointing with my chopsticks. But he didn't seem to really comprehend my meaning. That's happening a lot these days. Is he not hearing me, or is he not tracking with me? It's hard to say. He did finish the meal, more with relief than with any real joy. It was disappointing.

Happy anniversary anyway, Baby. I'm sorry the dinner wasn't what I'd hoped, but I'm glad we were able to celebrate one more year together. We showed 'em, didn't we?

You Were the Best

A couple of my husband's former colleagues came by for a visit this weekend. It was a perfect time of day, with sundowning hours away. My husband was cheerful and friendly. Though it was clear he wasn't tracking with the conversation at all, he did try to participate and was enjoying himself. I was glad to see him happy, the center of attention.

Just as everyone does with long-time friends, we talked about our families, caught up on other news, suggested films to each other, mourned friends and co-workers who had passed, and chatted about what we're up to now. What we're up to here is pretty much obvious, and the sadness in our guests' eyes at that realization would have been difficult to miss.

At one point, while our visitors were doing their best to casually bring memories forth so that my husband might better understand who the folks in front of him actually were, one of them said, "You were the best manager I've ever had." That comment, so sincere and unsolicited, brought tears to my eyes.

It's been a lot of years since my husband retired and a lot more years than that since either of these two wonderful people worked with him (though we have seen them both on occasion), which made the visit that much more special to me. The affection those who have worked with and for him continue to have for him speaks volumes about the kind of presence my husband was in the workplace. He worked hard, but he also had fun. He was an encourager, a good friend, and an advocate for his team. They could count on him. He led by example and always tried to be fair.

I appreciate these little reminders now and then. They're something for me to hold on to when my husband isn't exactly the guy I remember from days gone by. Thank you for coming over, dear friends!

Respite

Tomorrow, my husband comes home from the memory care facility. He's been there for almost a week to give me a chance to rest, catch my breath, and enjoy a brief time of refreshing.

I find that I certainly do miss him when he's gone. My heart yearns for him even though, let's face it, taking care of him and anticipating his needs and moods as the disease progresses has become bone crushingly stressful. But taking care of a person is not the same as caring for a person, and I do care for him deeply. Perhaps more deeply than I knew. The thought of him being permanently gone from home someday fills me with sorrow.

That being said, I noticed today that I was starting to feel almost relaxed, that my thoughts were less fragmented, and that I was actually cheerful. So I'm feeling more like me and less like someone who's mentally and emotionally cowering in a corner. But it's taken almost six days to get to this point. This tells me that the next time I arrange respite care, it needs to be for a bit longer period of time.

I was nervous about how he would adjust to being away from home and from me, and I was also concerned that the staff would find him a bit of a challenge. The first time I tried respite, just over a year ago, it was an absolute disaster for both of us. I hoped this time would be better, and it apparently has been. Naturally, I've called to check on him, but not every fifteen minutes (okay, except the first day or two). The caregivers are, after all, there to give care rather than to take phone calls from anxious relatives imagining all kinds of unpleasant scenarios. I was reminded once or twice that I needed to rest and relax. And that they would call me if the need arose. I took that to mean, "Lady, don't drive us nuts over here!"

So, tomorrow, he'll be coming home. I hope his transition back to our normal routine will be smooth and relatively peaceful. I imagine myself entering the facility, seeing him, joyfully giving him a big hug. I hope he will be just as happy to see me.