Sunday, February 11, 2018

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!

Saturday, February 3, 2018

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.


Tuesday, January 30, 2018

A Thousand Deaths

This disease!
It's like dying a thousand deaths
Haunted by the past
Haunted by the present
Haunted by the future
Back and forth
Day in, day out
Every day again
Over and over
It never ends
It's torture

One memory after another
One worry after another
One foreboding after another

Hoping
Wishing
Bargaining
Panicking
Crying

Remembering yesterday
Living today
Dreading tomorrow
Moment by moment
Letting go
Taking back
Letting go
Taking back
Not ready to let go

My head says one thing
My heart another
It just won't listen
It's too stubborn
Too deeply attached to stop loving
Too optimistic to despair
To foolish to give up

And yet
Accept it must
But at what cost!
Crushing heaviness
Powerless resignation
Passive acquiescence
Melancholy loneliness

No!
Everything in me rebels
I banish the thought
I take a deep breath
I am not alone
And never will be
God has not forsaken me
He envelopes me in love
He gives me hope
I give Him trust
He is good
Always good
Amen


Monday, January 29, 2018

Old Maid

A couple of weeks ago, I played UNO with the grandkids, and it was fun and easy. I thought I'd try a children's card game with my husband to pass the time, since I'm running out of creative ideas for keeping him occupied and interested.

I went all over town looking for an UNO game, but apparently they were sought-after stocking stuffers last Christmas. There were none to be found. So, I went through the kids' old rooms in search of something, anything, that would resemble it. I found an Old Maid card game. Thinking this was simple enough (match the cards), I gave it a go.

But he really couldn't figure out what he was supposed to do, and it ended up being an exercise in futility and frustration for me. Two days in a row. Two days that, actually, were very good days for him (and therefore for me). Two days when he was functioning at the top of his current game.

It might be hard for you to imagine someone not being able to match two pictures together, or two words together. I know it was hard for me to wrap my head around the fact that this simple children's card game is too hard for my husband, a man with degrees in computer science and electronics.

So, I'll keep looking for UNO. It might be easier. You just have to match colors or numbers. Wish me luck in finding it before the respite week is up and he returns home.

Sunday, January 28, 2018

The Day Before...

Napa Valley Vineyard
All rights reserved
Tomorrow is a big day for us. We are going to try a one-week stay for my husband at a memory care facility about 40 minutes away. This is partly because I need a break, and it's partly because I want to make sure it's going to work. We've had a week or two of pretty good days, which I know will make tomorrow all the more emotional and guilt-inducing. But that isn't what this post is about.

Anyway, I wanted to make today all about him, doing the things he enjoys most right now. Those would be eating and riding in a car. We had lunch at a local restaurant, and then I decided to drive up the east side of the Napa Valley, up Silverado Trail to Calistoga. It was an absolutely spectacular day. Warm temperatures, bright sunshine, blue skies, beautiful scenery. It's been a while since I drove up that side of the valley, and it's really lovely.
As we came around a bend revealing a particular scenic vista, I exclaimed, "Wow. It's really beautiful up here, isn't it?"

"Yes, it is," he replied, "But it isn't really made out of leather."

I had to smile.

We had a snack in Calistoga, stretched our legs as we walked down the main street of this quaint town, then headed back down the west side of the valley via Highway 29. It's very pretty there, too, but lots busier. And the road is flatter and straighter and goes through several towns rather than simply meandering through vineyards. If you've never been up Silverado Trail, give it a try. You'll find lots of wonderful wineries there, too, that are open just for you.

It's been a pretty good day.

By the way, kudos to the first responders who kept people safe and also protected their property during the fires last fall. My goodness, it's just amazing that some of the properties we saw were preserved! Absolutely astounding. But the spring grass is growing, and soon the scars left by the flames will fade, except in the memories of those most affected.









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.