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

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.

Hello? Is Anybody Here?

We're in the kitchen, sitting at the table. I'm on my laptop, trying to transact a little business online, and he's looking at a travel brochure. It would be inaccurate to say he's reading it. He's looking at the pictures of Alaska.

He gets up suddenly, leaves the room, and starts going down the hallway.

"Hello? Is anybody here?" he asks.

"I'm right here!" I respond, bewildered. I'm still sitting at the table. How can he turn around and forget that I'm right there?

But he doesn't hear me or doesn't comprehend what I've said. He is now farther down the hallway.

"Is anybody home?! Where did everybody go?" He sounds anxious now.

"I'm in the kitchen, honey," I reassure him. "I haven't gone anywhere," I add as I get up from the table and head for the hallway. But he is already making his way back to where I am. He seems relieved to see me. I notice that he has turned on all the lights. The outside lights, the hallway lights, the lights in all the bedrooms and bathrooms.

"Would you like me to turn on the television for you?" I suggest.

"Yes, please," he says. He heads downstairs to the Man Cave, where he likes to watch television. But only if I sit with him. He doesn't watch by himself anymore as he used to do not that long ago.

I go back upstairs for a moment to get my laptop and to turn off the lights. I come back to the Man Cave. He is watching Blue Bloods. Sort of. He has fallen asleep. But it will only be for a moment. He will doze on and off until bedtime. And then he will sleep for a little while, get up and wander around, come back to bed, sleep for a little while, get up and wander around. Eventually, I will fall asleep, too. But not for long.

You Aren't Gail...

Last year, we were driving down I-5 around sunset, which can be a confusing time of day for Alzheimer's patients. Here's what transpired, as written a year ago:

We were chatting pleasantly about the weekend we had just spent with my mom, who was ailing at the time. We all thought she would bounce back from this one, too (but she didn't).

He suddenly became very quiet and pensive. He looked at me strangely, shyly. "You aren't Gail," he ventured. "You aren't Joanne..."

"No, I'm not," I replied, "Those are your sisters, honey. I'm your wife. We've been married for 45 years." I figured this juicy tidbit of information would serve two purposes:  One, to help him recognize this old lady as the sweet young thing he used to know; and, two, to help him realize how much time has passed.

"Oh, that's right. I was confused there for a second."

"What's my name?" I asked calmly.

"Christiane," he replied.

"That's correct," I smiled.

"Something's going on with my brain. Is that why you won't let me drive?" I was taken aback by this question.

"It isn't that I won't let you drive," I explained, "It's that I think it isn't a very good idea. Just now, you weren't too sure who I was."

"True."

"So do you think it's a good idea for you to drive?" I asked.

"No," he said sadly. And it is sad. Very sad. And he won't remember having had this discussion, and we'll have it again tomorrow. And the next day. And again. And again...

And here we are, a year and a half later. The driving doesn't come up as often, thankfully. But his pickup truck sits in the driveway, collecting dust. We should probably sell it, since it hasn't gone anywhere in such a long time. But that just seems so final. I don't have the heart for it.

Where Is Everyone?

For several months now, mostly in the evening but increasingly during the day as well, my husband becomes confused about whether or not others are in the house with us. I don't know if that's because he is seeing things (I hope not) or because time warps for him. Maybe there have been people at the house that day, but they have gone home.

Unfortunately, almost every evening, he is also confused about why I'm in the house.

"How did you come to be here?" he asks.

"I live here," I explain. I then explain that no, I am not his sister. I explain that this is our home, that I am his wife, that we've been married for 45 years, that we've been living here for 32 years. Together. The whole time. He takes my hand and says he is glad, then he mentions that he's been having trouble with his brain and that he does remember me. He was just having a momentary lapse.

The other evening, we were sitting in the family room. It's downstairs. It was almost time for bed, so he checked the doors to make sure they were locked. Then, for some reason, he went upstairs for a few minutes and came right back down.

"Where is everyone?"

I wasn't entirely sure what he meant by that, since nobody had been at the house. It occurred to me that maybe he was wondering if the kids had gone out for the evening and hadn't returned home yet. I took a stab at it.

"The kids are all grown up and off on their own, honey."

"Oh," he said softly, looking a little lost and more than a little sad.

It's ironic, isn't it? We are so busy when the kids are home, raising them and earning a sufficient income to take care of them and providing for their needs, we hardly realize they're growing up until they leave for college. The time passes so quickly, and then they are gone.

And we're alone in our big house, just us and the dog, wondering how it could have all happened. Just the way everyone said it would.

Happy Father's Day.

The Visit from Mom

My mom was with us for a week. I've been trying to get her to do this for a really long time, to come down to see us and stay for longer than a couple of days. Mom is nearing 90 and shouldn't be living alone in her little cottage, really, so I'd hoped she would decide to stay indefinitely at some point. Though, of course, she is steadfast in her determination to die in her own bed and in her own house, as so many folks are.

So, she came down for the baby shower [see The Nana Diaries] and planned to go back home after "Bob's 4th of July Party" on July 7th. I "took the week off" from my paying job.

Here is what I learned about the feasibility of caregiving for two adults, one with a memory impairment due to Alzheimer's, the other with regular, run-of-the-mill aging issues (lack of good balance when standing or walking, for instance, and refusal to use a cane or a walker, but willing -- on very special, few-and-far-between occasions -- to be pushed hither and yon in a wheelchair). It can't be done 24 hours a day by one person.

By the end of the week, I was ready to run away from home. Not only that, but I was desperate to go back to work. Now, I ask you:  Is that normal? I was exhausted physically, mentally, emotionally, and every other "ly."

Because my mother was visiting, I went out of my way to plan interesting and pleasurable outings for us. Most were mainly for Mom, since she rarely is able to come down to see us. She's always wanted to see Filoli. She loves to window shop in high-end stores (Broadway Plaza), and one thing she unfailingly wants to do is to go to the beach to hear the ocean roar (Muir Beach). Things that would be a change of pace for my husband as well as being entertaining for all.

My husband was increasingly confused, asking the same questions over and over. "Where are we going?" "Why are we going there?" And then again. He was more agitated than normal, and more on edge than usual. There was some shortness and irritation, especially towards the end of the day when we were all tired (Is this "sundowning?"). And he became an attention hog. He was showing off for my mom, as well as being progressively more negative as each day passed. He seemed jealous of the time I was spending with my mother. The week was capped off with an explosive outburst at Bob's party that helped me to understand that, sometimes, the person in my husband's body isn't exactly the guy I married. Or maybe he is, but without appropriate filters to modulate behavior. His worst attributes were on display without the benefit of his wonderful side's veneer.

When Mom left for the ride home on Sunday afternoon, it was like someone had waved a magic wand over my husband. Relative calm returned to our home, along with good humor. I guess what they say about routine and maintaining a schedule and not doing too much bears consideration. Either that, or the 21 days of prayer and fasting for breakthrough at the church, which ended the day Mom left, have produced...breakthrough. I hope so!

I see now that under the current circumstances, Mom would have to be crazy (or desperate) to agree to move in with us, especially since she cared for Dad all those years when he had dementia. This makes me sad, because I wanted so much to do this for her. But why would she willingly come and watch me deal with what she dealt with, reliving all those memories over and over in living color? How unhappy would she be?

I'll continue to visit her regularly, as I have been doing, as long as possible. And I'll let her make her own decisions about what she wants to do and when she wants to do it. She's amazingly strong and sharp and resilient. And she's a grown-up. I love you, Mom.