Did You See That?

People with advancing Alzheimer's often see or hear things that aren't there. We've had a few of those incidents here, with the latest one being this morning.

My husband was walking past the stairway that leads to the Man Cave area. He looked down the stairs and said, "Hey! What are you doing down there?!"

Instead of trying to reassure him that there was nobody but us around, as I have been known to do in the evening when he wants to check the darkened house for activity by others before, during, and after going to bed, I decided to "go with it" and asked, "Did you see someone, honey?"

"Yes, I did," he replied.

"I'll go down and check," I said, already on my way down the stairs. I looked around briefly, because you never know. There actually might have been someone down there, right? But of course there wasn't.

"They must have left," I explained on my way back up the stairs, and that seemed to satisfy him. Or maybe he had already forgotten all about it. You know what? It was much better than arguing about whether or not he had really seen anything. I am learning.

You Kiss Your Mother With That Mouth?

God is good. Always good. He does not send disease "to teach us lessons." He is not a passive-aggressive God; he is not an abusive Father; he is not a disinterested Friend; he does not abandon us in our time of need. We were created to have fellowship with Him. He is unjustly blamed for bad things that happen to us and others, things that would more fairly be attributed to the enemy of our souls, to the human condition, or to ourselves due to our bad decisions.

But, as far as we know, this disease has nothing to do with bad decisions. To me, there is no greater proof that Alzheimer's is a downright demonic disease than the theft of a person's reasoning ability and the Jekyll/Hyde switch from a really nice person to a verbal (and, I'm sure sometimes, physical) abuser and back in a split second.

Many of you know that my employer was absolutely fabulous in working around our situation, allowing me to work mostly from my virtual office at home for the last year or two of my employment and only expecting me to physically be in the actual office when absolutely necessary. Not only that, but it was no problem with my employer if my husband tagged along on those occasions, even "helping" me with some of my tasks and feeling useful. I'm very appreciative of the love and concern demonstrated to us, and this allowed me to keep on going until it just really wasn't possible any more.

So, about a month or so before I stopped my outside work altogether, my husband was with me at the office as usual. It had been a normal and customary day, but now it was sundowning time. We headed out to the parking lot, got in the car, and started home.

Suddenly, out of nowhere, in the middle of "conversation" (such as it was and is), out came the most flaming torrent of blue language you've ever heard in your life. Vile, foul stuff. Jawdropping, take-you-by-surprise, breathtaking stuff. Now, don't get me wrong. My husband would on occasion -- especially when angry, upset, or irritated -- utter an expletive here and there, like most guys (and a lot of women, too) do under the circumstances. But this was far beyond that.

I seem to have misplaced the note I had this particular diatribe and other indignities written on, thank goodness, so this is written to the best of my memory and sanitized pretty well:  'You (expletive deleted) female dog. You're a horrible (expletive deleted) person, you (expletive deleted) female dog. You're the worst (expletive deleted) person I've ever met. I'm going to (expletive deleted, expletive deleted) knock your (expletive deleted) head off...' Etc. Well, you get the picture. Need I go on?

The barrage of insults and profanities against me and everything associated with me (my looks, my personality, my work, etc.) lasted all the way home. Which, granted, was only about five minutes. Thankfully. And as soon as we pulled in to the driveway, the Jekyll/Hyde switch flipped. It was as if nothing untoward had happened (except for the residual pain in my heart, fury in my belly, and tears streaming down my face).

"We're home?"

"Yes, we are."

And we got out of the car like two perfectly normal people on a beautiful day.

I've read somewhere that people in late-stage Alzheimer's have difficulty with vocabulary and many increasingly use profanity to express themselves when they normally would have resisted this impulse in the past. So, there we are. Or, there we were seven months ago, anyway.

It Wears on You

These past few weeks, for the first time since we started this journey, I haven't been focused on where we are in the process, how long the dark tunnel ahead is, or how far away the light at the end of that tunnel is. Rather, I am starting to wonder how much longer I am going to be able to keep this up physically and emotionally.

At first blush, this seems like a rather selfish thought, but it isn't. I am beginning to realize that, though nobody can care for him as I do, the commitment to "love, honor, and cherish, for better or worse, in sickness and in health" might be better accomplished in partnership with professionals at some point down the road. This is a difficult thing to admit to your stubborn self, even when you've known all along that it was a probability.

Sometimes, as my friends and family remind me often, the hardest thing to do is to make the right decision for your loved one and for yourself. What good will I be to him if I am clinging to sanity and/or health by my fingernails? And when will I know if I'm reaching that point? I have some benchmarks penciled in for myself, but will I recognize them when they happen? Or will I be delusional and feeling perfectly safe? These are valid questions.

This has been a year of steep cognitive declines, personality changes, and care requirements. But I look at him across the kitchen table, focused for the last five minutes on building something unknowable with large Legos, then staring out the window and stroking his beard, then wiggling his eyebrows at me when he notices I'm looking at him.

My heart warms and I smile. And I put those thoughts away for one more day. Or at least for now.

I Get Emotional Sometimes

We were watching a little PBS this evening, and on came a Glen Campbell fundraiser special, "Good Times Again." The songs were, of course, a throwback to younger days. It's easy to look back with rose-colored glasses, but those times held plenty of heartache in them, too, just as all times do. Retrospect is a funny thing, though, and as long as a song or skit doesn't remind you of struggles in your life, it's a feel-good experience to take a walk down memory lane.

During the "call-in" portions of the program, much was made of Mr. Campbell's struggle with Alzheimer's, his "poignant and courageous" final tour, the video of the tour that's available as a thank-you gift, etc. It was put together in a very emotional, heart-tugging way that's designed to make you pick up the phone and call. Or maybe it just made me emotional and tugged at my heart.

Returning to the musical programming, there was Mr. Campbell, smiling, wittily telling a story about meeting his hero. Eloquent. Expressive. Playful. Ten years ago. I drew parallels without meaning to, instinctively.

Suddenly, seemingly out of nowhere, I completely lost it. Overwhelmed, I had to leave the room. I didn't want to upset my husband by bursting into tears in front of him. There I was, crying like a baby. Sobbing, even.

You see, even when you think you're holding it together pretty well when caring for a loved one with this disease, especially your most special someone, it doesn't take much to peel off the glossy veneer of self-control and reveal the raw desperation you sometimes feel when facing the uncertainty...or maybe it's the certainty...of the future. It's heartbreaking.

Debbie Downer

In the three weeks since I posted "You're My Friend," a lot has unfortunately changed. You see, my good friend has had to place her dear husband. It's impossible for me to convey to you the feelings that this has stirred in me. Please don't misunderstand me. I completely support her decision. Only the person who has been providing care 24x7 for years can possibly know what it's like, and she realized that placement was best for both of them at this time. I mentioned in my previous post that her husband was not being his usual self, and things rapidly deteriorated.

I hear from you that you enjoy my posts, that they encourage you, uplift you, and give you some sense of what this journey is like. I sincerely hope you are reading between the lines and looking past my general cheerfulness. I'm optimistic and joyful and encouraging by nature and most of the time. But sometimes, believe me, it's all I can do to put one foot in front of the other. (And, yes, kind reader who felt it necessary to "warn" me years ago, I was and am perfectly aware that the future holds more surprises. Yay. And I forgive you for laughing at what you thought was my naivete at the time. This is not, however, my first rodeo.)

So, about my feelings. I'm sure you're probably aware that I don't post a lot of things I could be writing about right now. I will do so at some point, but it just doesn't feel helpful to discuss negative experiences such as sleeplessness, wandering, toileting, bathing (or lack of it), combativeness, aggression, and other wonderful stuff while I am feeling so beaten down and discouraged.

We and our friends have been a foursome for several years, meeting out and about, taking day trips and even cruises together, hanging out together, supporting each other. And now that has all changed. Just how it has all changed remains to be seen; but, naturally, plans have been cancelled and dates have been postponed. My friend's attention will be required elsewhere.

And so, even though I know it is not true, today I feel cut off and abandoned. Because I am so tired from days and weeks and months of stress and fractured sleep, I also feel suffocated, exhausted, demoralized. My mind is wandering to places that are dark and dreary. Places with no lights at the ends of tunnels. I wonder how long it will be before I'm forced to make the decision my friend has made. And that makes me cry out to the Lord in despair. I am desperate for the lies to be torn down so I can see past them to the truth and embrace it. I am just so, so tired. And I apologize to you for this "Debbie Downer" post.

It's Puzzling

My husband used to love puzzles. (Here's the link to a post about that and how we ended up doing piles of jigsaw puzzles.) Now he seems to have lost interest in jigsaws, other than to say "That's a pretty one" when he sees the picture on the box. Yesterday, I got out a puzzle with a photo of a horse on the front of the box, as he usually enjoys looking at horses and often chooses those puzzle subjects.

It was a 100-piece puzzle. I put the border together for him, because that's become impossible for him to do. I encouraged him to find pieces for me as I worked the puzzle "with" (read "for") him. He didn't. In fact, he started to break apart pieces that were already together. I continued to encourage him to help me, but he just sat there and watched me. Finally, there was just one piece left. Just one. And just one empty space for the piece.

"Go ahead and finish the puzzle," I suggested cheerfully.

"Okay," he responded as he sat there, looking at me without making a move.

"Honey, go ahead and finish the puzzle," I reminded him.

"How?" he asked.

"Well, there's one piece left, and one place for it to go," I said, pointing first to the piece and then to the empty space. I repeated this process several times.

But he didn't look where I was pointing as you might expect someone to do. He just stared at me uncomprehendingly. I tried again and again, but to no avail. He seemed confused and annoyed, still making no move to even attempt to pick up and place the puzzle piece.

Someone has suggested that I try easier puzzles, so I'll do that. But I don't hold out much hope. So much has been lost in the past few months, I hardly know where to start.

Who's that on TV?

It's been one of those mornings, but I'm trying to get a few things done outside anyway. Trimming and deadheading plants, emptying the remnants of ice chest contents from the weekend's "last" barbecue of summer (not really, I hope), that sort of thing. We've had a terrible heatwave, and the air is blissfully cool and breezy.

I come back inside, looking for my dear husband. He was just with me a minute ago, but now the house is strangely quiet. I check the bedroom. Perhaps he's taking a nap? Nope, not there. I know I haven't heard the front door alarm go off, and I've been right next to the back door. So I'm not really nervous; however, I'm wondering what he might be up to, if you know what I mean. If you have a toddler or you're on this journey at your place, too, you know just what I mean.

"Harry, where are you?" I say, loud enough to be heard.

"Watching down here," he responds, his voice wafting up the stairs from the Man Cave. That could mean pretty much anything.

I hurry down the stairs, as I've just a few minutes ago returned some things to the Man Cave that somehow had found their way to the bedroom. I don't really want to repeat that process right now and am hoping to circumvent further redecorating efforts.

I round the corner into the Man Cave. He is sitting on the couch, looking quite comfortable and pleased with himself as he sweeps his hands through the air in the direction of the television. Voila. The half-smile on his face says, "See? I'm watching television."

But the television is not on. He is seeing his reflection. Alrighty, then. Enjoy the show, my sweet.