Thursday, September 14, 2017

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.

Wednesday, September 13, 2017

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.

Tuesday, September 5, 2017

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.

Thursday, August 24, 2017

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.

Wednesday, August 23, 2017

You're My Friend

Yesterday, we joined another couple at a local coffee place, as has become our habit for social interaction and mutual support. You see, she's just been told that her husband is in Stage 6+ (out of 7 stages). He has frontotemporal dementia. She is a lovely person, so dedicated to making sure her husband is getting the best possible care and taking every opportunity to spend time with friends. He is such a nice guy, friendly and conversational until relatively recently. He still speaks with difficulty, but even his wife has trouble knowing what he's saying. Lately, he has seemed a little morose and detached.

Usually, my husband grumbles when we sit down at our table, turning his back to our friends irritably and nonsensically greeting everyone else who comes in, making unintelligible teasing comments and asking questions the meaning of which only he can be sure of. It seems rude and encroaches on everybody else's space, but the regulars at the coffee shop are so cool with it. Kind and understanding. Well, usually.

So yesterday, fresh from a trip to an animated film with another friend, my dear husband was in an unusual, happy mood as we sat at our table. My friend's husband was in a very confused, nervous, wandering mood. Not his usual scenario at all.

He wandered in and out of the coffee shop several times to check out something he thought was happening with their car (nothing was happening). Totally out of current character, my husband was concerned for him, following him to help him and bring him back to our table. This in itself was astonishing. Both men sat down opposite us ladies.

Suddenly, my husband turned to my friend's husband and said, "You're my friend." Receiving no acknowledgement other than a confused nod, he added, "You are! You're my friend. I like you. You can help me, and I can help you."

We ladies caught our breath and looked at each other in surprise. Our jaws drop to the floor. And then we quickly looked away, lest the tears flow freely. What a beautiful moment. For a moment.

Wednesday, August 9, 2017

The Man in the Mirror

We have an antique armoire in our bedroom, and it has mirrored doors. During the day, the sunlight reflects through the window onto the mirrors and helps brighten the room. During the night on several occasions this past week, my husband has gotten out of bed suddenly to stand in front of those mirrors, staring at his reflection by the moonlight filtering through the window, not saying anything.

He seems curious about the man he sees there, leans over to look around to the side of the armoire, then looks at the front again, then the side again, then the front again. Side. Front. Side. Front. He doesn't seem agitated or threatened. I wonder what he's thinking. He still isn't saying anything. I ask him if something is wrong. He walks over to the window and looks out into the back yard, towards the neighbor's landscape lighting. Then he goes back to the armoire one more time and returns to bed.

"Who's that over there?" he asks, pointing somewhere between the armoire and the window. I don't know who that is.

In the past, he's asked me to look at the mirror in the hallway with him. He sees my reflection next to his, and I point out that we are the same two people who are in the framed photos just below it. Sometimes he accepts this explanation, and sometimes not.

This nighttime behavior of his with the armoire is new. I've read that Alzheimer's patients sometimes find it comforting to talk to their reflections. But sleep is at a premium at our place, so I'll probably have to cover the armoire mirrors at some point to avoid the distraction during sleep hours. Especially if he starts having conversations with himself.

Tuesday, August 8, 2017

Farewell, Glen Campbell

Glen Campbell died today. He was diagnosed with Alzheimer's 6 years ago, and he was 81 years old. Funny how hard I took it.

Mr. Campbell was a fixture of my youth, and his songs were part of its soundtrack. And so I felt a connection to him that was renewed when I heard of his illness. For the past couple of years, it seems he was always on my mind. I wondered when I would hear this news, as I'd read he wasn't doing well not that long ago. But you can't always rely on what you hear, so I took it with a grain of salt. And now this.

How can I not hear this news and compare it to our situation? Our families were seemingly on parallel paths, and now their battle is over. But ours goes on. I am not sure if I am relieved for his family, sad for them, grieving with them, or sad for us and dreading what's to come. Probably, it's all of the above.

My heart is heavy on so many levels, I don't even know where to start. But I know that someday, when we're all in Heaven, the pain will be over. There will be no more tears, no sorrow. Only joy in the presence of the King. So, maybe I'm also a bit jealous, Glen.

Please say hi to my Mom and Daddy, if you happen to see them. If you're pickin' and a grinnin' with your buddies who have gone before you, I'm sure my folks will be in the audience. Thank you for sharing your gift of music with us.