My husband is very social, which wasn't always the case. I consider this to be a blessing at this point, since he is willing to talk to just about anybody (even strangers on the street and the small children of passers by, which may or may not be a good thing). Any conversation with someone new (or new to him) involves telling his story, which, like most of us, he's anxious to insert at the first opportunity.
Our stories are important to us and to others. Our identities and memories are wrapped up in our stories. We are the sum total of our experiences, some say. And when our memories start to fail, our stories are an anchor in a storm of confusion.
Because we've spent our entire adult lives together, I'm able to help reinforce that anchor. Long-time friends can also be helpful in this regard.
He'll turn to me and ask, "Where did I work again, Chris?" I'll remind him of the places he's worked.
"Oh, yes. And I did [such and such]." This part may or may not be entirely accurate, as memories are pulled from here and there and pieced together, or exaggerated, or made up. It's all good.
"And I was fortunate to travel all over...Where did I go again, Chris, when I used to go to Europe?" He worked in Europe for six weeks many years ago. He remembers the event, but adds more and more countries to the trip. I wonder if these are places he's always wanted to go, but never said so?
He always brags about our children, too, though he wants to be reminded of where they work, what they do there, the names of their spouses, how many grandchildren there are, and so on. He wants to make sure he gets that part right. Or maybe I'm the one who wants to make sure he gets that part right. Whichever.
If he's talking with a new acquaintance who was in military service, the conversation quite naturally flows in that direction. Shared experiences carry a level of comfort:
"I was in the Navy. I was stationed in Puerto Rico for four years." It was two years, but that's okay.
"I flew in P2 Neptunes," and accurately describes the airplane, what it was for, and more and more details about what happened on those missions...things I didn't even know, though I was there. Top secret, or made up memories? Who knows. Some of the memories aren't how they happened at all. But it doesn't matter. He's sharing his story.
And then he asks the other person, "What branch of the service were you in?"
The person's answer is responded to appropriately, including the mandatory teasing for other branches of the military; but, particularly if the person is a recent acquaintance, the response just might flow pretty directly right into, "I was in the Navy. I was stationed in Puerto Rico......" And about that time, the person realizes that my husband may not remember the conversation later.
But that's okay. At least he's having a conversation. He's getting a chance to tell his story. And that makes him happy. And when he's happy, there's sunshine in my life.
Saturday, August 23, 2014
Conversation
As I'm sure you have already surmised from my writing, I am a person of many words. I love a good conversation, especially a meaty one about current events or politics or new ideas in Bible interpretation.
I've heard there are three levels of conversation. At the first level, your conversation centers around other people. Gossip, for instance. At the next level, it centers around events. And at the third and deepest level, it centers around ideas.
We (my husband and I) can't carry on conversations at any of these levels any more. Here's a sample from this morning's ritual:
Him: "So, what's happening today?"
Me: "You have a doctor's appointment this afternoon."
Him: "Oh, okay."
Me: "So don't forget to take a shower when you get up."
Him: "Why?"
Me: "Because you have a doctor appointment today."
Him: "Oh, okay."
I get up and go to the kitchen to start breakfast. I hear drawers opening and closing. I go to the bedroom to find him already dressed in yesterday's clothes.
Me: "Did you take a shower, sweetheart?"
Him: "No. Why? Should I? Do I need one?"
Me: "Well, yes. You have a doctor appointment today."
Him: "Oh, okay."
And yet, I do still try to engage him in conversations about ideas and events and people. Because sometimes, we almost succeed. And hope springs eternal.
I've heard there are three levels of conversation. At the first level, your conversation centers around other people. Gossip, for instance. At the next level, it centers around events. And at the third and deepest level, it centers around ideas.
We (my husband and I) can't carry on conversations at any of these levels any more. Here's a sample from this morning's ritual:
Him: "So, what's happening today?"
Me: "You have a doctor's appointment this afternoon."
Him: "Oh, okay."
Me: "So don't forget to take a shower when you get up."
Him: "Why?"
Me: "Because you have a doctor appointment today."
Him: "Oh, okay."
I get up and go to the kitchen to start breakfast. I hear drawers opening and closing. I go to the bedroom to find him already dressed in yesterday's clothes.
Me: "Did you take a shower, sweetheart?"
Him: "No. Why? Should I? Do I need one?"
Me: "Well, yes. You have a doctor appointment today."
Him: "Oh, okay."
And yet, I do still try to engage him in conversations about ideas and events and people. Because sometimes, we almost succeed. And hope springs eternal.
Time Warp
All of us have experienced the sensation that hours have gone by, only to check our watches to see that we've only been waiting impatiently for that friend or phone call or event for half an hour. We quickly realize our mistake, perhaps chuckle at ourselves and our impatience, and move on to more productive thoughts. For instance, forgiving that friend for making us wait so long.
At first, I thought my husband was just being impatient like that. He would say something like, "Where have you been? I've been sitting here waiting for you for an hour and a half!" In actuality, it had been more like fifteen minutes. I've been realizing lately that he isn't simply exaggerating. He really does think it's been that long.
His concept of time is becoming warped. How frustrating is this? Very. When I tell him ahead of time that we have an event coming up later in the day (in response to his query, "So, what's happening today?"), he really does think I've asked him to hurry up and get ready for that event, even though it doesn't start until 5 o'clock, it will take ten minutes to get there, and it's currently 11 a.m. Then he's upset and irritated because I'm not ready to go. And then he's frustrated and irritated because he thought it was time to go, and it isn't, and now he's going to have to wait.
And you're thinking to yourself, "Well, so, big deal. He's going to have to wait." For most of us, it wouldn't be important at all. We would find something else to occupy our time for a couple of hours. But for him, in this case, ten minutes elapsed equals an hour imagined. He'll be frustrated and irritated again as the conversation happens again. And again. And again. And, naturally, this is frustrating and irritating for me, too.
"Okay," you say to yourself, "Just don't tell him what's coming up." I know this because I've thought of employing the method myself. In fact, I remember saying that very thing to my Mom in reference to my Dad.
But here's what I'm wondering: How would you answer his question, then, when he asks you what's going to be happening, and you answer him with enthusiasm because you think it'll be an exciting change of pace, something to look forward to (which it is)? I'm all ears.
At first, I thought my husband was just being impatient like that. He would say something like, "Where have you been? I've been sitting here waiting for you for an hour and a half!" In actuality, it had been more like fifteen minutes. I've been realizing lately that he isn't simply exaggerating. He really does think it's been that long.
His concept of time is becoming warped. How frustrating is this? Very. When I tell him ahead of time that we have an event coming up later in the day (in response to his query, "So, what's happening today?"), he really does think I've asked him to hurry up and get ready for that event, even though it doesn't start until 5 o'clock, it will take ten minutes to get there, and it's currently 11 a.m. Then he's upset and irritated because I'm not ready to go. And then he's frustrated and irritated because he thought it was time to go, and it isn't, and now he's going to have to wait.
And you're thinking to yourself, "Well, so, big deal. He's going to have to wait." For most of us, it wouldn't be important at all. We would find something else to occupy our time for a couple of hours. But for him, in this case, ten minutes elapsed equals an hour imagined. He'll be frustrated and irritated again as the conversation happens again. And again. And again. And, naturally, this is frustrating and irritating for me, too.
"Okay," you say to yourself, "Just don't tell him what's coming up." I know this because I've thought of employing the method myself. In fact, I remember saying that very thing to my Mom in reference to my Dad.
But here's what I'm wondering: How would you answer his question, then, when he asks you what's going to be happening, and you answer him with enthusiasm because you think it'll be an exciting change of pace, something to look forward to (which it is)? I'm all ears.
Wednesday, July 30, 2014
Executive Function
In some Alzheimer's patients, so the neurologist tells me, language skills are the first out the door. In my husband's case, the language skills remained stable long after the executive function started to go.
That means he might at one time have known how to accomplish a task, and he probably can still accomplish that task with help, but he can't remember the task, plan the task, get the supplies for the task, organize the task, and complete the task. In other words, he can paint the room for you, but you need to pick the colors, pick up the supplies, make sure all the necessary tools are there, and give exact instructions (to be repeated) as to what it is you want done. And you must be patient when he gets sidetracked.
For instance, today, we went to gas up the truck. As I exited the vehicle, I asked if he had checked the oil lately. He didn't remember, so up went the hood. He found the oil stick, he pulled it out, wiped it off, and...well, golly...it was down two quarts. He didn't remember what grade to get, so I suggested he check the oil sticker on the windshield from the last time the oil was changed. He got sidetracked in the small print, so I looked over his shoulder and saw that it was the second thing listed, right between the date and the mileage.
I said I would go into the station to get the oil while he filled up the tank with gas. When I came out, I saw that he was standing next to the vehicle, but he hadn't filled it up. Upset with himself, he found the appropriate key for the gas tank after a few tries, opened up the little door, took off the gas cap, placed it on the dash, and came to where I was standing in front of the vehicle. But he didn't actually put the nozzle in and started the pump.
I handed him the two quarts of oil, which he placed inside the cab of the truck. I suggested that it might be a good idea for him to go ahead and put the oil in, reminding him that he had checked the oil level and that it was very low. "Oh, yes. That's right." I helped him find the right place to put in the oil. He took the cap off, poured in the oil, checked the level again, and it was all good.
That's when I noticed that he hadn't filled up the tank. You know, it had slipped his mind because he was distracted. He said he didn't know what was wrong with him these days, a comment which, happily, he will soon forget. However, I will not. It is another reminder, another punch in my heart. It makes me weep inside.
He filled up the tank, locked the little door, put the hood down, and started to get into the truck. I mentioned that the gas cap was still on the dash, and he unlocked the gas door again, allowing me to put the gas cap back on while he shook his head at himself.
Now, you might think to yourself, "So, what's the big deal? The truck got filled up, and the oil got put it. It's all good." Yes, that's true.
But this is our new normal: Every task requires reminding. Every procedure requires gentle prodding. Every chore requires instructions. Repeat step one. And, at the end of a long day, that's wearing. And you know what else is hard? Nobody understands how frustrating it is, for both of us. I mean, how hard can it be, right?
I know you don't understand, though you think you do. You can't understand unless it's happening to you, and it's happening every day, and it's happening every time anything needs to get done. It's emotionally devastating, and not everyone has a support system, and not everyone has hope or faith.
You might be wondering how you can be helpful. Just be there. This time, your kindness and the offer of a shoulder to cry on might be needed. But next time, it could be you who needs the shoulder and the kindness. Especially the kindness.
That means he might at one time have known how to accomplish a task, and he probably can still accomplish that task with help, but he can't remember the task, plan the task, get the supplies for the task, organize the task, and complete the task. In other words, he can paint the room for you, but you need to pick the colors, pick up the supplies, make sure all the necessary tools are there, and give exact instructions (to be repeated) as to what it is you want done. And you must be patient when he gets sidetracked.
For instance, today, we went to gas up the truck. As I exited the vehicle, I asked if he had checked the oil lately. He didn't remember, so up went the hood. He found the oil stick, he pulled it out, wiped it off, and...well, golly...it was down two quarts. He didn't remember what grade to get, so I suggested he check the oil sticker on the windshield from the last time the oil was changed. He got sidetracked in the small print, so I looked over his shoulder and saw that it was the second thing listed, right between the date and the mileage.
I said I would go into the station to get the oil while he filled up the tank with gas. When I came out, I saw that he was standing next to the vehicle, but he hadn't filled it up. Upset with himself, he found the appropriate key for the gas tank after a few tries, opened up the little door, took off the gas cap, placed it on the dash, and came to where I was standing in front of the vehicle. But he didn't actually put the nozzle in and started the pump.
I handed him the two quarts of oil, which he placed inside the cab of the truck. I suggested that it might be a good idea for him to go ahead and put the oil in, reminding him that he had checked the oil level and that it was very low. "Oh, yes. That's right." I helped him find the right place to put in the oil. He took the cap off, poured in the oil, checked the level again, and it was all good.
That's when I noticed that he hadn't filled up the tank. You know, it had slipped his mind because he was distracted. He said he didn't know what was wrong with him these days, a comment which, happily, he will soon forget. However, I will not. It is another reminder, another punch in my heart. It makes me weep inside.
He filled up the tank, locked the little door, put the hood down, and started to get into the truck. I mentioned that the gas cap was still on the dash, and he unlocked the gas door again, allowing me to put the gas cap back on while he shook his head at himself.
Now, you might think to yourself, "So, what's the big deal? The truck got filled up, and the oil got put it. It's all good." Yes, that's true.
But this is our new normal: Every task requires reminding. Every procedure requires gentle prodding. Every chore requires instructions. Repeat step one. And, at the end of a long day, that's wearing. And you know what else is hard? Nobody understands how frustrating it is, for both of us. I mean, how hard can it be, right?
I know you don't understand, though you think you do. You can't understand unless it's happening to you, and it's happening every day, and it's happening every time anything needs to get done. It's emotionally devastating, and not everyone has a support system, and not everyone has hope or faith.
You might be wondering how you can be helpful. Just be there. This time, your kindness and the offer of a shoulder to cry on might be needed. But next time, it could be you who needs the shoulder and the kindness. Especially the kindness.
Friday, June 20, 2014
A Normal Life
Originally published in Chrissie's Confessional on Tuesday, May 20, 2014
My Life Was Normal Once
So, I was cleaning up some files at work today. At the back of a drawer, I found a folder that contained some personal stuff, some business stuff, and some combination stuff. Including an appointment calendar from 2005. I know, right? Throw that thing out, for crying out loud!
But, wait: 2005. That was the year we went to New Orleans at Mardi Gras, and then we went to Aruba for the first time, and then we went to Houston and embarked on our first Caribbean cruise. There were also personal milestones of others which are their stories to share but helped make up the rich tapestry of that year. So, why did I hang onto this relic of memories past? I think it must have been so I wouldn't forget how tenuous "normal" can be.
You see, in 2005, my life was just about perfect. In fact, I remember thinking to myself that life was beautiful, and I couldn't imagine it getting better. You know that advice older people give you about doing things while you can and not putting everything off until retirement? Well, that's what we were starting to do.
And then, maybe a year later, things just didn't seem right with my husband. We attributed it to exhaustion, overwork, and so on. I'm sure most people do that. It was hard for his work to get done on time and with excellence. He was working ridiculous hours, leaving home at 6 a.m. and sometimes not returning until after midnight. I started helping him with his spreadsheets and reports, because he was so busy and working such long hours. In retrospect, I was helping to cover for him, to help him get by. He only had a few years to go before retirement.
And then he lost his job. It became obvious to others that his memory wasn't what it used to be. That he was having trouble picking up conversations where they'd left off. That he was repeating himself and asking questions over and over. And we began the testing process. The rest, as they say, is history.
All of that to say, your life as you know it could go on and on swimmingly until you someday ride off into the sunset with your love by your side, having lived, shall we call it, a "charmed" existence. Or, the fairy tale could be over tomorrow. Pack as much gusto as you can into today. You know that advice I was talking about a couple of paragraphs ago? Just do it.
But, wait: 2005. That was the year we went to New Orleans at Mardi Gras, and then we went to Aruba for the first time, and then we went to Houston and embarked on our first Caribbean cruise. There were also personal milestones of others which are their stories to share but helped make up the rich tapestry of that year. So, why did I hang onto this relic of memories past? I think it must have been so I wouldn't forget how tenuous "normal" can be.
You see, in 2005, my life was just about perfect. In fact, I remember thinking to myself that life was beautiful, and I couldn't imagine it getting better. You know that advice older people give you about doing things while you can and not putting everything off until retirement? Well, that's what we were starting to do.
And then, maybe a year later, things just didn't seem right with my husband. We attributed it to exhaustion, overwork, and so on. I'm sure most people do that. It was hard for his work to get done on time and with excellence. He was working ridiculous hours, leaving home at 6 a.m. and sometimes not returning until after midnight. I started helping him with his spreadsheets and reports, because he was so busy and working such long hours. In retrospect, I was helping to cover for him, to help him get by. He only had a few years to go before retirement.
And then he lost his job. It became obvious to others that his memory wasn't what it used to be. That he was having trouble picking up conversations where they'd left off. That he was repeating himself and asking questions over and over. And we began the testing process. The rest, as they say, is history.
All of that to say, your life as you know it could go on and on swimmingly until you someday ride off into the sunset with your love by your side, having lived, shall we call it, a "charmed" existence. Or, the fairy tale could be over tomorrow. Pack as much gusto as you can into today. You know that advice I was talking about a couple of paragraphs ago? Just do it.
Tuesday, June 17, 2014
The Concert
Six years ago, my husband was released from his job. Five years ago, testing began. And four years ago, 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!
For my husband's birthday, I surprised us both with last-minute tickets to see singer, songwriter, and musician James Taylor. We'd never seen him "live" before, and both of us have enjoyed his music since we were young. You could say it's the "soundtrack of our lives."
The weather was lovely, our seats were surprisingly good (especially considering the reasonable price), and Mr. Taylor's performance was incredible. Wow. What stage presence, voice command, and rapport with the audience. He's a consummate pro, making a large venue feel like a small club. Intimate. Comfortable. We were transported years back in time to when we were just starting out together. Music is amazing that way. It has memories attached to it. Mostly good ones, in this case.
My husband, along with the rest of the audience, was happily singing along to the songs. I was pleased and surprised that he was remembering the lyrics, but I wasn't prepared for the emotions I was feeling. A deep sense of sorrow and melancholy enveloped me. Yes, I was enjoying the concert. Very much so. Yes, I was singing along, too. Yes, I was listening for my favorite song, too. But tears were running down my cheeks. I may have been sobbing, overcome with feelings of loss and longing for that elusive something that might never actually have been there. That thing you can't quite put your finger on but wish you could embrace.
I was happy. And I was sad. Happy because my husband was having a wonderful time. Happy because I'd been able to give him something really special for "his" day. Sad because tomorrow, or even on the way home tonight, he might not really remember having been there without prompting. Sad because we were young once, and we didn't realize we wouldn't always be. We were healthy once, and we took it for granted. Just like all of you.
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| I took this photo. Please don't use it without my permission. Thank you. |
The weather was lovely, our seats were surprisingly good (especially considering the reasonable price), and Mr. Taylor's performance was incredible. Wow. What stage presence, voice command, and rapport with the audience. He's a consummate pro, making a large venue feel like a small club. Intimate. Comfortable. We were transported years back in time to when we were just starting out together. Music is amazing that way. It has memories attached to it. Mostly good ones, in this case.
My husband, along with the rest of the audience, was happily singing along to the songs. I was pleased and surprised that he was remembering the lyrics, but I wasn't prepared for the emotions I was feeling. A deep sense of sorrow and melancholy enveloped me. Yes, I was enjoying the concert. Very much so. Yes, I was singing along, too. Yes, I was listening for my favorite song, too. But tears were running down my cheeks. I may have been sobbing, overcome with feelings of loss and longing for that elusive something that might never actually have been there. That thing you can't quite put your finger on but wish you could embrace.
I was happy. And I was sad. Happy because my husband was having a wonderful time. Happy because I'd been able to give him something really special for "his" day. Sad because tomorrow, or even on the way home tonight, he might not really remember having been there without prompting. Sad because we were young once, and we didn't realize we wouldn't always be. We were healthy once, and we took it for granted. Just like all of you.
Saturday, June 14, 2014
You're Beautiful!
Overnight travel and a strange bed can make sleep come at a premium, especially if confusion sets in before drowziness happens. Wakefulness means conversation:
He asks, "Where are we?"
I answer, "My mom's bed. We're at her place for a few days."
"Oh," he says, touching my arm. "Your skin is so soft."
"Thank you."
"No, really. It's really, really soft."
"Thank you. I use a lot of lotion to keep it that way."
He chuckles.
I say, "What's funny?"
"I can't believe I'm here with you."
"Why?"
"You're so beautiful!"
"Thank you," I say, with tears in my eyes. This has never happened before in all our years of marriage.
"No, really, you're the most beautiful girl I ever dated."
This has never happened, either.
"Thank you," I whisper, "You're kinda cute, yourself."
Now it's his turn to say, "Thank you. I love you." And he chuckles again.
"I love you, too. What's funny?"
"Nothing's funny. I'm just so happy. You're so beautiful! I can't believe I'm with you. I love you. I really do!"
Wow.
"Are we married?"
"Yes, we've been married 44 years."
"44 YEARS? Wow. You're so beautiful. Really. You look great. Your body looks great, so curvy and soft. I'm so happy!"
This more or less exact conversation was repeated over and over all night long, until he finally fell asleep just before dawn. And so did I, curled up in his arms, amazed at this wonderful discovery of deep love and continued attraction. Why didn't he romance me like this from the very beginning? I don't know. But he's doing so now, and that's what matters.
One of my friends told me years ago, upon learning of the diagnosis, that she felt sorry because the relationship I'd always dreamed of having with my husband would now never happen. I was taken aback at the time and tried to dismiss her comment, discounting it as baseless words that should not have been spoken. Because you know what? She was wrong.
He asks, "Where are we?"
I answer, "My mom's bed. We're at her place for a few days."
"Oh," he says, touching my arm. "Your skin is so soft."
"Thank you."
"No, really. It's really, really soft."
"Thank you. I use a lot of lotion to keep it that way."
He chuckles.
I say, "What's funny?"
"I can't believe I'm here with you."
"Why?"
"You're so beautiful!"
"Thank you," I say, with tears in my eyes. This has never happened before in all our years of marriage.
"No, really, you're the most beautiful girl I ever dated."
This has never happened, either.
"Thank you," I whisper, "You're kinda cute, yourself."
Now it's his turn to say, "Thank you. I love you." And he chuckles again.
"I love you, too. What's funny?"
"Nothing's funny. I'm just so happy. You're so beautiful! I can't believe I'm with you. I love you. I really do!"
Wow.
"Are we married?"
"Yes, we've been married 44 years."
"44 YEARS? Wow. You're so beautiful. Really. You look great. Your body looks great, so curvy and soft. I'm so happy!"
This more or less exact conversation was repeated over and over all night long, until he finally fell asleep just before dawn. And so did I, curled up in his arms, amazed at this wonderful discovery of deep love and continued attraction. Why didn't he romance me like this from the very beginning? I don't know. But he's doing so now, and that's what matters.
One of my friends told me years ago, upon learning of the diagnosis, that she felt sorry because the relationship I'd always dreamed of having with my husband would now never happen. I was taken aback at the time and tried to dismiss her comment, discounting it as baseless words that should not have been spoken. Because you know what? She was wrong.
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