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'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.

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.

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.

Picking Apples

Delicious apples from our garden!

Last year at this time, my dear husband brought buckets and buckets of apples into the house for me to process. Even the teeny, tiny, one-inch-wide ones. He saw them on the tree, they were (thankfully) ripe, so he picked them for me.

I was slightly aggravated that he thought I could take care of them all at once like that on top of my other duties, which, on that particular day, included my job (I was still working then). I had already picked the ones I planned to use for the first batch, and leaving some on the tree for a couple of days wasn't going to hurt anything.

Today, a Facebook post reminded me that the apples might be ready, so I went out to check on the tree. Sure enough, beautiful, juicy Gravensteins teased me from the upper limbs. I got a box and a short stepladder, and I started picking as my dear husband looked on distractedly or wandered around the garden. Up and down the ladder I went, depositing the apples in the box.

As I graduated to a taller ladder, he asked if he could help. Climbing up a shaky ladder is probably not the best idea for him (or for me, come to think of it), so I started handing the picked fruit down to him, asking him to place it in the box for me. This he mostly did, when he wasn't distracted or bringing apples back to me or putting them in his pockets or wandering off.

This is a small, not-very-significant thing, I know. But it's a demonstration of a couple of things: First, be thankful in all things. For instance, in retrospect, I should have been thankful last year when he picked apples on his own. Second, life can change dramatically in a very short time. In some cases, instantly. Live each day as it comes. See the first thing. Repeat.

Don't Kick Me When I'm Down

When this disease pops up, each "new thing" is a fresh trauma. You don't know if it's a one-time thing, if it's going to happen repeatedly, or if it's going to get worse. You just know that, for you and your loved one, everything is now different. Maybe not dramatically so yet, but definitely traumatically so.

And if you've had a parent or other relative who's had Alzheimer's, and now your spouse has it, you can't help but remember and compare (though, to be fair, there is absolutely no comparison between caring for a parent and caring for a spouse). So, even though your spouse might just have some beginning symptoms, you relive the trauma you felt when your parent did the same thing, and you project your current situation down the road to its logical conclusion. It's a hard thing, because you know what's probably coming. You hope it won't be the same, but you know it definitely might. And the thought of it brings you to tears as you quake inside in desperation.

Those who are farther down the path or have seen it before might discount what you're going through presently; however, it's important for them to realize that, for you, this seemingly minor thing that's happening is confirmation that your life has changed. And not for the better. Your dreams have been deferred or extinguished, though you might not want to admit it yet. Your future is not what you'd imagined it would be. Is that dramatic? Sure. But this disease is a dramatic thing, a thief that laughs at you and kicks you when you're down.

If you're currently tempted to downplay the upheaval that's going on in a friend's life because it just doesn't seem that bad to you, please rethink your reaction. Your friend needs your understanding, not your bromides and platitudes. Maybe you know how hard it's going to be for your friend later. Please don't say something like, "Just you wait. You ain't seen nothing yet. My uncle used to (fill in the blank), and you can't even imagine what my aunt went through!" That is not helpful; it's demoralizing and insensitive. Your friend is hanging on by a thread and needs your encouragement. Your friend already knows, deep down inside, that it's going to be worse. Much worse. Pointing that out makes you part of the problem, not part of the solution.

When my mom learned that my husband had been diagnosed with Alzheimer's, I could see that her heart was breaking for me. My dad suffered from Alzheimer's and had passed away just a couple of years before. "Oh, darling," she said to me, "I am so sorry for you. At least with your father, I didn't know what was ahead of me."

There's something to be said for her reaction. She expressed caring and compassion, and she acknowledged that, for me, the journey might -- and probably would -- be more traumatic than it had been for her. She hadn't known what to expect. I did.

I still hope for a cure, a new medication, a miracle, a better outcome. Not in the cheerful, expectant way I once did, though. More in a quiet, reserved way.

You might wonder if my faith is still strong. As my friend Rob would say, "But...God!" And that is where my hope lies. God is kind and good. He is loving and a good Father. He is my refuge and my strength. When I am down, He lifts me up. He keeps me going and fills my heart. So, the answer to your question is, "Yes!"

I Wanna Play My Harmonica

Photo by Chris

Music is transcendent and therapeutic. It goes deep inside and stays with you. My husband has always loved it, though he hasn't played an instrument since he was a boy.

A number of years ago, I purchased a couple of harmonicas for him. He was still hunting then, and I thought he might enjoy learning to play some tunes by the campfire. It was probably more wishful thinking on my part than a desire in his heart, and the harmonicas and how-to-play books gathered dust, forgotten.

I found the harmonicas the other day and showed them to him. We both played with them a little, and I encouraged him in his gleeful efforts. "Wow! That sounds fantastic, honey!"

Much to my delight, he has been carrying the harmonicas with him everywhere, experimenting with making music (sometimes inappropriately, such as during a young lady's solo of the national anthem at a graduation ceremony). The tunes are nothing that anyone would recognize, of course, but it seems to bring him pleasure every time he "discovers" a harmonica in his pocket and starts to blow into it. I'm ecstatic about finding anything that elicits interest in him, no matter how fleeting.

On our drive home today, I was playing some "golden oldie" CDs in the car. He whipped out his harmonica and started "playing along" enthusiastically. The harmonica he was using was in the wrong key, and the "tune" he was playing bore no resemblance to the song on the CD. No matter. Anyone else in the car might have been driven insane by the dissonance, but it was beautiful music to me.

It delights me to see him happily enjoying something. Will this be an ongoing interest? We'll see. But today, it brought an hour or two of relief for his nervous energy. Kind of like a fidget spinner for the soul.