In Retrospect

At age 59, my husband was released from his job. At age 60, testing began. And at 61, he was diagnosed with early-onset Alzheimer's. These are my thoughts and feelings about our experiences, good and not so good. I hope, on the whole, my chronicles will be an encouragement to you. Thank you for reading them. Hang on to your hope!

Now that I've made this diary "public" (well, more or less), people feel more comfortable asking me questions. That's a good thing, because one of the things I'm hoping to encourage is dialogue. "The Big A" is a scary thing, partly because it's a mystery. Partly because it's in the shadows. Partly because people think it's a mental illness, which it isn't. Because we can't see it, it's hard to know how to react to it. Because it makes us uncomfortable, we shy away from it.

One of the most commonly asked questions I've received is, "What were the warning signs? What did you first notice?"

Well, the problem is that when the warning signs are first happening, it's so easy to attribute them to something else. Alzheimer's isn't exactly the first thing you think of when a relatively young person starts exhibiting symptoms.

My husband was working long hours, and his job was a high pressure one with lots of responsibility not only for his own work, but for the work of others. Was he burning out? Was it hearing loss that was causing his inattention and lack of concentration? Was exhaustion causing the bullheadedness, impatience, and sour disposition? Was it having so much on his mind that was causing him to throw up his hands in frustration at all the paperwork and reports?

Of course, in retrospect, I know it was confusion. Irritation at the confusion. Embarrassment. And fear. When you know you aren't remembering things that should be automatic, things you've been doing excellently for years, it's frightening.

I can hear you saying, "Okay, we get all that. But what were some of the warning signs?"

When he started needing assistance completing spreadsheets, asking me for help with the same things over and over ("How do you freeze the rows at the top again?"), was that a warning sign, or was it just easier to ask me than to look it up? When he didn't have time to complete his reports, so I pitched in to help him catch up, was that a warning sign? When he worked longer and longer hours without being able to complete his tasks, was that a warning sign? Should I have known at that point, or would a person blame overwork?

When I helped him organize his office and there were a half-dozen copies of everything in piles on his desk and in desk drawers and in filing cabinets, yet he was making another copy, should I have realized he didn't remember having a bunch of them already? Because I thought he was just in a hurry to meet a deadline and didn't want to waste time searching the stacks.

When he refused my offer to consolidate the paperwork for him, was it because he thought I wouldn't realize I was throwing away something important, or was it because every piece of paper had become important to him, and hoarding behaviors had begun? And what is the difference between a hoarding behavior and, say, a prized collection?

When he angrily thought someone must have taken something he couldn't find, rather than simply assuming (like most people would) that the item had been misplaced, is that when I should have known?

And so, you see, the "first warning signs" are things you only notice in retrospect. They are different from the later warning signs...the repeating of a story right after telling it, the forgetting whether or not you've eaten a meal, the wondering where your kids live and how many grandchildren you have. I should have know, but I didn't. And, probably, neither will you.

But if things are happening that have you wondering, please get your loved one checked out. There's no cure yet, but there are medications that can slow the progress of the disease. And hang on to your hope.

You'd Think He'd Learn

On Thursday mornings at the church, there's a social gathering for senior citizens. This is an inclusive bunch, as "senior citizen" is defined as "anyone age 50 or over." Bet you didn't know you were a "senior citizen," did you?

First there's food, then there's a brief devotional, and then there's the real reason everyone is there: Chicken Foot Dominoes! And conversation. The room in which the group meets has no carpeting or sound baffling to absorb the noise, so it can be hard to hear what the person across the table is saying, especially for those with hearing issues. And it can be hard to concentrate, especially for those with memory issues.

Chicken Foot is an important part of Harry's weekly schedule. He enjoys the game and almost always comes out victorious. At least, he thinks he does. But sometimes the noisy atmosphere makes it hard for him to keep track of whose turn it is, or whether or not he's had an opportunity to put his tile down, or whether he's been passed over. And when he's frustrated or confused, he can be abrupt and impatient. It's sometimes hard for others to understand that this isn't anger or aggression. It's fear and confusion. The best way to handle that is with patience and kindness.

A fearful and confused person is not going to react well to irritated reminders of how to play the game, rolling eyeballs, requests to calm down, or other assorted reactions that can unfortunately be expected when others don't understand how difficult it is for him and how much he needs this social interaction. His memory and executive ability might not be what they once were (absolutely brilliant), but he is still smart. He might not remember what it was that made him feel bad around a person, but he'll remember the feeling and associate it with that person.

So, if you find yourself in a situation where you have the opportunity to either put gasoline on the fire of confusion or defuse the bomb of frustration, please choose to defuse the bomb. Measure your words, be careful of your tone of voice, and try a little gentleness. It'll go a long way towards getting a calm and relaxed result.

"But I talked to him about it three times," someone said to me. "You'd think he'd learn!"

Well, actually, no. My point exactly. But thanks for understanding...and, thankfully, most of these wonderful seniors are kind, patient, and very (very) understanding. To them, I send heartfelt thanks!

"A gentle answer deflects anger, but harsh words make tempers flare." - Proverbs 15:1

A Visit with the Neurologist

At the end of July, we had our regular visit with our neurologist. She is fabulous, very interested in my husband's case, and is on staff at UC Davis Medical School. Her specialty is Alzheimer's, I may have mentioned already. I appreciate her and trust her.

This appointment was weird, though. The questions she was asking me are, I'm sure, routine, but I wasn't comfortable answering them right in front of my husband. I did the best I could, but it just wasn't possible to be really direct or entirely honest or even to think of specific examples of incidents or behavior with him sitting right there!

He was his usual joking and funny self and seemed to be trying to make the best of the situation, but he was visibly upset and defensive about the line of questioning. Who could blame him? What must it be like to be confused, to know you don't remember things, to be asked questions about things other people think you should remember, but you don't? It must be so frustrating. It must feel as though a trap is being set for you, and you must be careful to step around it.

Doctor:  "Have you done anything out of the ordinary lately?"
Me:  "We went to a couple of concerts. Do you remember those?"
Him:  "What concerts?"
Me:  "There were two. One was on your birthday, and one was with your brother. The James Taylor one and the Led Zeppelin one?"

Oh, yes! And his face lit up as he talked about how good the concerts were and how much fun we had. Either he was remembering them very well, or else he was pulling in other memories, or else he was doing a very good job of covering up. And you know what? It's hard to tell.

Doctor:  "I haven't seen you for a while. Didn't you take a cruise last year?"
Him:  "A cruise?"
Me:  "Remember our cruise last year to the Caribbean?"
Him:  "Who did we go with?"
Me:  "It was my class reunion."
Him:  "Oh, ya. I was stationed in Puerto Rico when I was in the Navy, you know."

And, he had fallen through the cracks. An appointment should have been scheduled several months before, but the information had apparently not been entered into the computer properly. The reminder postcard was not sent out; the appointment was not made. It's the first time that's happened, so I plan to start a spreadsheet for appointments. While I'm at it, I'll start a spreadsheet for medications. Might as well, right?

"Significant Decline"

My husband had an appointment with a neuropsychologist this morning to do the new round of cognitive testing requested by the neurologist at our last appointment. After a brief consultation, I left him in the doctor's care while the tests were administered, a two-hour process.

I had a relaxed cup of coffee in the cafeteria and returned to the waiting area. I read a murder mystery. I enjoyed chatting with other folks about travel, adding a couple of spots to my mental bucket list. And I waited for my husband to be returned to me.

Instead, I was surprised to see the doctor. By himself. He asked if I could step into the conference room for a moment before we rejoined my husband. Ominous? You bet.

"Well," he began, "I think it's fairly obvious that there's been a significant decline." He waited a moment for that to sink in. He continued, "I'd like to ask you about a few things..." And he asked some leading questions that I can't really remember right now, because I'm in a daze. The file is lost in my mental filing cabinet. Something about appropriate behavior and reactions and confusion and so on.

Significant decline. "Significant" and "decline" are not words you are prepared to hear together. "Mild" and "decline," okay. "Significant" and "improvement," okay. But not "significant decline." Granted, though he's been tested by UC Davis for the anonymous studies in which he's participating (read about that here), it's been five years since he's been tested officially for his doctor's file. Five years of slow, gradual decline that apparently adds up significantly.

Next Tuesday, we'll be meeting with the neuropsychologist again to get our test results. I think I already know they won't be what I'd hoped for. Sometimes, it's easy to say, "God is good all the time." But sometimes, I have to remind myself.

It Isn't All Bad

Around our house, it was never a given that a compliment of any kind would be forthcoming, and a meal was assumed to be tasty if it was eaten:

"How do I look?"
"You'll do."

"Did you enjoy your meal?"
"I ate it, didn't I?"

In retrospect, I recognize that this was teasing. It had to be, because my food is absolutely amazing, and I'm gorgeous! Well, the food is edible, anyway.

So, the awkwardness or shyness or whatever it was that was keeping my husband from saying nice things is going away. Not all personality changes brought on by this horrible disease are negative. At least, not yet.

And so, in addition to telling me he thinks I'm beautiful, he's also telling me he loves my cooking:

"Did you enjoy your meal?"
"Yes, I did. It was delicious! Really, really good. Thank you."

Wow. Even "thank you." He might not remember what he just ate, exactly, but he seems to have figured out how to answer the question.

I Miss You

We sit on the couch together, watching a movie we've seen many times. He is holding me close, and I can hear his heartbeat. I tell him I love him. He kisses my forehead gently and gives me a little squeeze. It is a tender moment that pulls at my heartstrings. A wave of nostalgia passes over me, and tears fill my eyes. I sigh deeply to regain control of my emotions. I hope he will interpret this as a sigh of contentment, and, in a weird way, it is. I miss him so much. But he hasn't gone anywhere.

Have I Eaten Yet?

I think I have figured out why my husband is gaining weight, seemingly for no apparent reason.

Thursday morning:

This morning, he had a large helping of cold cereal and a small bowl of strawberries for breakfast. That was about two hours ago, at the usual time. Since then, because I have been in the kitchen on my computer, I have spotted him going to the cupboard to get a bowl with cereal box in hand. Twice so far.

"Honey, why are you getting a bowl?"
"I want some breakfast."
"You already had breakfast."
"Oh."

And the bowl goes back into the cupboard. Until the next time.

Is it that he's actually hungry? Is it that he doesn't remember having eaten already?

Thursday evening:

It was a friend's birthday, so we all met up at a sidewalk restaurant to enjoy the beautiful summer evening and grab some eats. It was a very informal affair, and people were joining the group intermittently, causing the food orders to arrive helter skelter. Some before ours, some with ours, some after ours.

We'd already eaten a light meal, so I ordered a carne asada quesadilla to share. It was smothered in sour cream and delicious guacamole. It was fabulous. There were chips and salsa on the table, too. Anyway, we emptied our plate, and rightly so!

More food arrived at the table for those who had ordered after us. My husband seemed distressed, so I asked him what was the matter. He was upset because he'd been patiently waiting for his food, and when was it going to arrive? I reminded him that he'd already eaten, pointing out the empty plate. But he wasn't having it. Thankfully, someone else had an extra burrito. That seemed to make everything okay.

Sunday noon:

A group of us went out for Chinese food. Unfortunately, most of the orders looked pretty much alike, which was kind of confusing for all of us, but especially my husband. How are you supposed to know whether or not you've already tried a dish? So, that part was understandable. But making sarcastic remarks because no one told you there was rice available when you, in fact, have already just eaten a large helping of rice? That's somewhat less understandable.

So, I think I've answered my own question. When he fills up his plate again at a potluck, it just might be because he doesn't remember having eaten the first plateful rather than because he's still hungry.

What am I supposed to do? He's a grown man. If he wants something to eat, he should be able to have something to eat. Sometimes, I feel like the food police, and I don't like that. I don't like it at all.