This is not a post about my husband's illness, necessarily. Rather, it is a post about caregiving. More specifically, it is a post about what to do if you'd like to encourage me as his caregiver. Or, actually, what not to do.
There are some pretty terrific films out there about people with Alzheimer's Disease, people who've known people with Alzheimer's Disease, people who are living with people with Alzheimer's Disease, people who visit institutionalized people with Alzheimer's Disease, and so on. The Notebook, Away from Her, and Still Alice come to mind. Please don't suggest that I see the films. In one way or another, I am living them. They are bound to rip my heart out, and I'm sure that's not your intent. Your intent is to show you care, to let me know you were touched by the films, to tell me you want to understand. But unless you are living or have lived my life, you cannot possibly understand. And that is okay. You do not have to understand in order to support me and encourage me.
Along the same vein, I know you are trying to let me know you feel my pain when you tell me devastating stories about your aunt's or uncle's or father's or mother's struggles with something my husband and I aren't dealing with yet. And possibly (because hope springs eternal) will never deal with. Please know that while I appreciate your efforts to empathize, those stories are not helpful unless they pertain to a valuable resource I haven't discovered. You will generally know you are being helpful when my countenance brightens and I ask you for more information.
And speaking of resources, again, I really do appreciate your desire to be caring when you send me articles about medical studies, discoveries, vitamins, oils, diets, cleanses, and all sorts of miracle treatments. Someday, one of them just might be "it." In the meantime, it's a bit demoralizing. It makes me feel as though I'm not doing enough and have possibly missed an opportunity, even though I've read the studies, use the vitamins and oils, and am careful about our nutrition. My husband's neurologist is part of the research team at UC Davis. She specializes in Alzheimer's and dementia. She is fantastic and fabulously knowledgeable. She has told me that if there's anything at all even vaguely promising coming down the pike, we will be the very first to know.
But if you personally know someone who's been diagnosed with early-onset Alzheimer's and has recovered using one of the miracle treatments, by all means, put me in touch with that person. My countenance will brighten, and I'll ask you for more information!
Saturday, December 12, 2015
Friday, October 16, 2015
The Organizer
For some time, my husband has been fixated on "sorting," "reorganizing," and putting things "away." For instance, he removes the contents of his wallet, showing me his gift cards and identification, shifting things around and counting the money (several times) before putting everything back. It isn't necessarily where it had been, but it's all back in the wallet. He's doing that right now, as a matter of fact, as I write this blog. Twice so far since I sat down, but the wallet is still in his hand, so anything can happen. Aha! Everything is coming out and being sorted yet again.
He also looks through the things that are in his dresser drawers, taking things from here and putting them there. No big deal, right? Except when he puts something away, I can't find it for him, because I don't know where he's moved it And he can't find it, either, because he doesn't remember seeing it in the first place, much less moving it to wherever it is right now.
Lately, he's started reorganizing other areas of the house and other people's things (mine, for instance), and it's a bit harder to be sanguine about the whole thing.
Last week, I was looking for a particular cookbook I'd promised to lend to a friend. It was on one of the chairs in the kitchen, waiting to leave the house with me. And then it wasn't. Where could it possibly be? I checked the bookcases. Nope. I checked the living room, the dining room, the guest room, the storage room, the family room. Nothing. He was helping me look for it, but he didn't remember what it was we were looking for. He asked me again and again, and I explained it to him again and again. Was it worse to be unable to find it, or was it worse to have to explain what it was over and over? I don't know. He hadn't seen it. He hadn't moved it.
I decided not to worry about the cookbook for now, figuring I could always buy a new one for my friend, and everything would be fine. The next day, I was moving a pile of t-shirts he had placed on the hope chest that's next to the bed in our room when, lo and behold! There it was! He didn't know how the cookbook got there. He hadn't seen it. He hadn't moved it. I concluded that I must be losing my mind (you would be, too).
Just a few minutes ago, I was putting some clean clothes in his dresser. I set about straightening the contents of a drawer to make room for what I was putting away. And that's where I discovered my latest travel diary notebook (that blog is adventures-inparadise.blogspot.com). I can't imagine what it was doing in his dresser, hidden under his clothing. I suppose he was organizing things, found it where I left it (on my nightstand), and put it away.
I've heard that Alzheimer's patients in nursing homes often are accused of stealing things. I wonder if this is how it happens. You see Mrs. Smith's pink sweater on the back of a chair. You also have a pink sweater (or you had one when you were young, or whatever), so you take it and put it away where it belongs. In your closet.
So, if you see my husband with something that doesn't belong to him, he's probably "found" it and is looking for a good spot for it. And he probably doesn't realize that it isn't his. After all, it's in his hand.
He also looks through the things that are in his dresser drawers, taking things from here and putting them there. No big deal, right? Except when he puts something away, I can't find it for him, because I don't know where he's moved it And he can't find it, either, because he doesn't remember seeing it in the first place, much less moving it to wherever it is right now.
Lately, he's started reorganizing other areas of the house and other people's things (mine, for instance), and it's a bit harder to be sanguine about the whole thing.
Last week, I was looking for a particular cookbook I'd promised to lend to a friend. It was on one of the chairs in the kitchen, waiting to leave the house with me. And then it wasn't. Where could it possibly be? I checked the bookcases. Nope. I checked the living room, the dining room, the guest room, the storage room, the family room. Nothing. He was helping me look for it, but he didn't remember what it was we were looking for. He asked me again and again, and I explained it to him again and again. Was it worse to be unable to find it, or was it worse to have to explain what it was over and over? I don't know. He hadn't seen it. He hadn't moved it.
I decided not to worry about the cookbook for now, figuring I could always buy a new one for my friend, and everything would be fine. The next day, I was moving a pile of t-shirts he had placed on the hope chest that's next to the bed in our room when, lo and behold! There it was! He didn't know how the cookbook got there. He hadn't seen it. He hadn't moved it. I concluded that I must be losing my mind (you would be, too).
Just a few minutes ago, I was putting some clean clothes in his dresser. I set about straightening the contents of a drawer to make room for what I was putting away. And that's where I discovered my latest travel diary notebook (that blog is adventures-inparadise.blogspot.com). I can't imagine what it was doing in his dresser, hidden under his clothing. I suppose he was organizing things, found it where I left it (on my nightstand), and put it away.
I've heard that Alzheimer's patients in nursing homes often are accused of stealing things. I wonder if this is how it happens. You see Mrs. Smith's pink sweater on the back of a chair. You also have a pink sweater (or you had one when you were young, or whatever), so you take it and put it away where it belongs. In your closet.
So, if you see my husband with something that doesn't belong to him, he's probably "found" it and is looking for a good spot for it. And he probably doesn't realize that it isn't his. After all, it's in his hand.
Sunday, September 13, 2015
Telling Time
It isn't always drama and trauma at our house. Sometimes, it's just small things that have a way of stabbing you in the heart with an icicle.
"What time is it?" I asked.
"5:80," he replied. Huh? The little hand was on the five, and the big hand was on the eight.
"The little hand is on the one. So, what hour is it?" I asked the next day.
"1," he replied. Correct. Whew.
"The big hand is just past the 2, so how many minutes is that?" I asked.
"20," he offered. Not the right answer, but I thought maybe I had an idea where he was going with this one. I decided to go for the explanation:
"The big hand counts off the minutes, and there are five minutes between each number." Blank stare. I counted the minutes off for him. Blank stare. Well, okay, then.
Usually, it isn't a problem at all. He can tell time, no problem. Other times, I think I'd better get out his digital watch. But he always manages to set that on military time (24-hour time setting) somehow, and then he can't do the math, and it's even more confusing and frustrating. "Just subtract twelve, honey, and that'll be what time it is," I suggest helpfully.
But he can't (usually) do math in his head any more, something I realized not long ago. So I printed a sheet of basic math problems for him to try, and that didn't go well.
My husband is a guy who had a brilliant mind and a memory like a steel trap. Sometimes, you don't even realize when an ability has been lost. That loss has come about incrementally, like a thief stealing one small item at a time. You don't realize anything is missing until it's all gone.
"What time is it?" I asked.
"5:80," he replied. Huh? The little hand was on the five, and the big hand was on the eight.
"The little hand is on the one. So, what hour is it?" I asked the next day.
"1," he replied. Correct. Whew.
"The big hand is just past the 2, so how many minutes is that?" I asked.
"20," he offered. Not the right answer, but I thought maybe I had an idea where he was going with this one. I decided to go for the explanation:
"The big hand counts off the minutes, and there are five minutes between each number." Blank stare. I counted the minutes off for him. Blank stare. Well, okay, then.
Usually, it isn't a problem at all. He can tell time, no problem. Other times, I think I'd better get out his digital watch. But he always manages to set that on military time (24-hour time setting) somehow, and then he can't do the math, and it's even more confusing and frustrating. "Just subtract twelve, honey, and that'll be what time it is," I suggest helpfully.
But he can't (usually) do math in his head any more, something I realized not long ago. So I printed a sheet of basic math problems for him to try, and that didn't go well.
My husband is a guy who had a brilliant mind and a memory like a steel trap. Sometimes, you don't even realize when an ability has been lost. That loss has come about incrementally, like a thief stealing one small item at a time. You don't realize anything is missing until it's all gone.
Monday, August 31, 2015
The Sun Rises in the Morning
This is a thank-you note to you, dear readers, because I know you have been praying for us. How do I know this? As bleak and hopeless as my last post seemed, the sun came up yesterday morning. It was a spectacular day. Bright sunshine was accompanied by cool breezes. And I got some sleep. It's amazing how sleep and an encouraging Sunday message can rejuvenate a person.
It was a good day for my husband, too. He laughed at all the pastor's jokes and even participated in the singing. He said he was happy, and he acted like it. He liked the food I cooked. He was pleased to know I wasn't just here for a visit. He held my hand as we talked. He thought I was 15 years younger than I am. (I didn't see any reason to correct that notion.) And he gave me lovesick looks between kisses all day, like a newlywed.
That's the weird thing about this disease. You never know what tomorrow will bring. Or today, either, for that matter. One minute, you want to throw in the towel. The next minute, there's no reason to. And vice versa.
I am grateful to have had this respite, a reminder that things can still be good, even when they're not so good. And I thank you again for your prayer support. Prayer changes things. Don't stop.
It was a good day for my husband, too. He laughed at all the pastor's jokes and even participated in the singing. He said he was happy, and he acted like it. He liked the food I cooked. He was pleased to know I wasn't just here for a visit. He held my hand as we talked. He thought I was 15 years younger than I am. (I didn't see any reason to correct that notion.) And he gave me lovesick looks between kisses all day, like a newlywed.
That's the weird thing about this disease. You never know what tomorrow will bring. Or today, either, for that matter. One minute, you want to throw in the towel. The next minute, there's no reason to. And vice versa.
I am grateful to have had this respite, a reminder that things can still be good, even when they're not so good. And I thank you again for your prayer support. Prayer changes things. Don't stop.
Saturday, August 29, 2015
Praying for the End of Time
Meat Loaf's song "Paradise by the Dashboard Light" has been keeping me awake at night lately. Tom Cruise did such a great lip synch job of it on Jimmy Fallon's show, and now it just seems to run on and on in my mind like a broken record at 3 a.m. (Here it is, in case you missed it...about minute 5.)
But that isn't actually the subject of this post. Some time ago, one of my "dear readers" posted some terribly discouraging words to me. I won't repeat them here, but you can read all about it in the comments section of this post, His True Self. Those words have also been playing in my mind over and over, ominously. I'm sure the person was simply writing out of personal pain, and I was just going to delete the comment. But then I saw my daughter's reply. It was stellar and so true.
I am writing these posts partly as a diary for me, but also as an encouragement (or at least as information) for others. I am selective about what I share, and I don't post every negative thing that happens. I'm trying to find something positive to say in each situation, so I usually wait until I'm able to see that before posting. That's why you don't always hear from me regularly. I'm waiting.
Lately, my husband obsesses about "his" things even more than he used to, especially when he's frustrated and confused. Naturally, that's happening more and more. When he gets in one of these "moods," this is "his" house. Not the home we've both lived in for almost 33 years, but his house that he's lived in since long before I came into the picture. He angrily asks me what I think I'm doing here. When I explain that it's my house, too, and that I've lived here with him the whole time, he is no longer calmed by the information. This conversation happens every day, multiple times a day.
Today, for the first time, he told me to leave, get out, and "Get the f***" out of his house. I don't care who you are or what you're going through, those are some hard words to hear. I didn't react well. I haven't yet reached the point where I'm teflon and words don't stick or hurt. I'm just doing the best I can, and sometimes that just doesn't seem to be good enough.
If there's anything I'm learning as we walk this rocky path called Alzheimer's, it's that giving up sometimes looks pretty good. An "escape plan" is enticing. If you're walking this road too, I want you to know you're not alone. Don't give up.
And so, "dear reader" from months ago, if you are still reading my blog and not just a troll, I pray that your pain is less and your grief is eased. I hope you will also pray for me as I travel this lonely and heartbreaking road. The rude awakening you mentioned happened long before you wrote to me. In fact, it's been happening every day for a very long time.
For the rest of you, I'm sorry that this hasn't been the usual half-laughing, half-crying stuff you're used to reading from me. But sometimes, I'm just "praying for the end of time to hurry up and arrive."
But that isn't actually the subject of this post. Some time ago, one of my "dear readers" posted some terribly discouraging words to me. I won't repeat them here, but you can read all about it in the comments section of this post, His True Self. Those words have also been playing in my mind over and over, ominously. I'm sure the person was simply writing out of personal pain, and I was just going to delete the comment. But then I saw my daughter's reply. It was stellar and so true.
I am writing these posts partly as a diary for me, but also as an encouragement (or at least as information) for others. I am selective about what I share, and I don't post every negative thing that happens. I'm trying to find something positive to say in each situation, so I usually wait until I'm able to see that before posting. That's why you don't always hear from me regularly. I'm waiting.
Lately, my husband obsesses about "his" things even more than he used to, especially when he's frustrated and confused. Naturally, that's happening more and more. When he gets in one of these "moods," this is "his" house. Not the home we've both lived in for almost 33 years, but his house that he's lived in since long before I came into the picture. He angrily asks me what I think I'm doing here. When I explain that it's my house, too, and that I've lived here with him the whole time, he is no longer calmed by the information. This conversation happens every day, multiple times a day.
Today, for the first time, he told me to leave, get out, and "Get the f***" out of his house. I don't care who you are or what you're going through, those are some hard words to hear. I didn't react well. I haven't yet reached the point where I'm teflon and words don't stick or hurt. I'm just doing the best I can, and sometimes that just doesn't seem to be good enough.
If there's anything I'm learning as we walk this rocky path called Alzheimer's, it's that giving up sometimes looks pretty good. An "escape plan" is enticing. If you're walking this road too, I want you to know you're not alone. Don't give up.
For the rest of you, I'm sorry that this hasn't been the usual half-laughing, half-crying stuff you're used to reading from me. But sometimes, I'm just "praying for the end of time to hurry up and arrive."
Wednesday, July 1, 2015
I Can't Believe My Good Luck!
My husband has been very disoriented since we returned from vacation several weeks ago. I don't know if this is because we changed venues so many times on our trip or if it is just because.
For instance, so far this week, he's claimed to have owned our car (the one I drive) longer than he's known me. He says it is "his" car. This is fascinating, as I bought the car myself. And he was with me. He said at the time that he wanted me to have the experience of doing the selecting and haggling, so I'd know what to do.
He's asked me if I've ever been to what most people would consider to be our home town. The place where we went to high school. The place where we met. The place where we were married. The place where we lived after he left the service. The place where our oldest son was born.
He became indignant and combative when I reminded him that we co-own our house ("I've lived here a lot longer than I've known you!") and have lived in it for 32 years ("Well, oh, yeah? If that's so, then where have you been?!"). We've had this conversation off and on for the past few days, and it generally culminates with, "Well, I guess I'll have to take your word for it." Is this painful? You bet.
Today, he didn't remember (for a brief moment, I am assuring myself) that I'm the mother of his children. Or that he had children. Or that the darlings whose mugs are on the coffee mug are our grandchildren (his grandchildren, yes).
A few minutes after eating a large (and tasty, if I say so myself) dinner this evening, he rather demanding asked, "No food?!" "We just ate." "Oh, yeah."
But the good news is that he thinks he won our house as a prize for something. He said so the other day. He couldn't believe his great good luck. I couldn't believe my ears. And he also can't believe his great good luck that I'm staying over again tonight. Silver linings. Always look for the silver linings.
For instance, so far this week, he's claimed to have owned our car (the one I drive) longer than he's known me. He says it is "his" car. This is fascinating, as I bought the car myself. And he was with me. He said at the time that he wanted me to have the experience of doing the selecting and haggling, so I'd know what to do.
He's asked me if I've ever been to what most people would consider to be our home town. The place where we went to high school. The place where we met. The place where we were married. The place where we lived after he left the service. The place where our oldest son was born.
He became indignant and combative when I reminded him that we co-own our house ("I've lived here a lot longer than I've known you!") and have lived in it for 32 years ("Well, oh, yeah? If that's so, then where have you been?!"). We've had this conversation off and on for the past few days, and it generally culminates with, "Well, I guess I'll have to take your word for it." Is this painful? You bet.
Today, he didn't remember (for a brief moment, I am assuring myself) that I'm the mother of his children. Or that he had children. Or that the darlings whose mugs are on the coffee mug are our grandchildren (his grandchildren, yes).
A few minutes after eating a large (and tasty, if I say so myself) dinner this evening, he rather demanding asked, "No food?!" "We just ate." "Oh, yeah."
But the good news is that he thinks he won our house as a prize for something. He said so the other day. He couldn't believe his great good luck. I couldn't believe my ears. And he also can't believe his great good luck that I'm staying over again tonight. Silver linings. Always look for the silver linings.
Monday, June 22, 2015
Where Is Everyone?
For several months now, mostly in the evening but increasingly during the day as well, my husband becomes confused about whether or not others are in the house with us. I don't know if that's because he is seeing things (I hope not) or because time warps for him. Maybe there have been people at the house that day, but they have gone home.
Unfortunately, almost every evening, he is also confused about why I'm in the house.
"How did you come to be here?" he asks.
"I live here," I explain. I then explain that no, I am not his sister. I explain that this is our home, that I am his wife, that we've been married for 45 years, that we've been living here for 32 years. Together. The whole time. He takes my hand and says he is glad, then he mentions that he's been having trouble with his brain and that he does remember me. He was just having a momentary lapse.
The other evening, we were sitting in the family room. It's downstairs. It was almost time for bed, so he checked the doors to make sure they were locked. Then, for some reason, he went upstairs for a few minutes and came right back down.
"Where is everyone?"
I wasn't entirely sure what he meant by that, since nobody had been at the house. It occurred to me that maybe he was wondering if the kids had gone out for the evening and hadn't returned home yet. I took a stab at it.
"The kids are all grown up and off on their own, honey."
"Oh," he said softly, looking a little lost and more than a little sad.
It's ironic, isn't it? We are so busy when the kids are home, raising them and earning a sufficient income to take care of them and providing for their needs, we hardly realize they're growing up until they leave for college. The time passes so quickly, and then they are gone.
And we're alone in our big house, just us and the dog, wondering how it could have all happened. Just the way everyone said it would.
Happy Father's Day.
Unfortunately, almost every evening, he is also confused about why I'm in the house.
"How did you come to be here?" he asks.
"I live here," I explain. I then explain that no, I am not his sister. I explain that this is our home, that I am his wife, that we've been married for 45 years, that we've been living here for 32 years. Together. The whole time. He takes my hand and says he is glad, then he mentions that he's been having trouble with his brain and that he does remember me. He was just having a momentary lapse.
The other evening, we were sitting in the family room. It's downstairs. It was almost time for bed, so he checked the doors to make sure they were locked. Then, for some reason, he went upstairs for a few minutes and came right back down.
"Where is everyone?"
I wasn't entirely sure what he meant by that, since nobody had been at the house. It occurred to me that maybe he was wondering if the kids had gone out for the evening and hadn't returned home yet. I took a stab at it.
"The kids are all grown up and off on their own, honey."
"Oh," he said softly, looking a little lost and more than a little sad.
It's ironic, isn't it? We are so busy when the kids are home, raising them and earning a sufficient income to take care of them and providing for their needs, we hardly realize they're growing up until they leave for college. The time passes so quickly, and then they are gone.
And we're alone in our big house, just us and the dog, wondering how it could have all happened. Just the way everyone said it would.
Happy Father's Day.
Sunday, June 14, 2015
There She Is
"There she is," he exclaims as he comes around the corner from the family room to the laundry room with the dog, "Gail...Joanne...Caity...I mean, Heather!"
He looks at me earnestly. He knows none of those names is correct, but he isn't sure why. I am folding laundry, and he looks confused but relieved to have found me. I just told him a minute ago that I was going to check on the laundry.
"Who am I?" I ask him, gazing at him intently from across the room.
"Gail," he says. Gail is one of his sisters. It has happened before that he has called me by his sister's name and maybe even confused me with her.
"Do I look like Gail?" I ask.
"Yes. No. I don't know." Clearly, there is something about me that reminds him of her, which is both creepily weird and oddly logical. I take a breath.
"I'm Chris. I'm your wife. We live here together. This is our house. Gail is your sister." I say these things as calmly and normally as possible while freaking out internally.
"Yes, I know that. You're Chris. That's what I said." Alrighty, then. He says he is going to call me Gail from now on, because he can't remember Chris. I'm not sure what to say about that. It is odd, though, don't you think?
He looks at me earnestly. He knows none of those names is correct, but he isn't sure why. I am folding laundry, and he looks confused but relieved to have found me. I just told him a minute ago that I was going to check on the laundry.
"Who am I?" I ask him, gazing at him intently from across the room.
"Gail," he says. Gail is one of his sisters. It has happened before that he has called me by his sister's name and maybe even confused me with her.
"Do I look like Gail?" I ask.
"Yes. No. I don't know." Clearly, there is something about me that reminds him of her, which is both creepily weird and oddly logical. I take a breath.
"I'm Chris. I'm your wife. We live here together. This is our house. Gail is your sister." I say these things as calmly and normally as possible while freaking out internally.
"Yes, I know that. You're Chris. That's what I said." Alrighty, then. He says he is going to call me Gail from now on, because he can't remember Chris. I'm not sure what to say about that. It is odd, though, don't you think?
Monday, May 11, 2015
Opening the Mail
My husband likes to look through the mail, open the envelopes, read the contents out loud to me (even if I've already read them), place the contents back in the envelope, arrange the envelopes in a pleasing (to him) manner on the kitchen table and...repeat the process.
This evening, there were two pieces of mail that were of particular interest. One was a very kind invitation to an event we will unfortunately not be able to attend. The other was a bill.
"Who's that?" he asked in reference to the invitation, having taken out each piece that was in the envelope, examined it carefully, and returned it to the envelope. I tried to explain to him that it was an invitation to a friend's graduation and party, but I wasn't able to help him remember who the person was. Several times. At any rate, I placed the invitation on my bulletin board (okay, the refrigerator door) to serve as a reminder to send a card. He promptly accused me of taking the mail away before he'd even had a chance to see it. I gave the envelope back to him, and he reviewed it again, and asked me the same question again, and accused me of taking the mail away before he could see it again when I placed it back on the refrigerator door. This process was repeated several times, and then attention shifted to the invoice. Take it out. Read it. Explain it. Put it back. Take it out. Read it. Explain it. Put it back.
I was in danger of becoming impatient, so I decided to remove myself from the situation for a moment or two. I reminded myself that he really couldn't remember what he had just seen or what he had just asked or what I had just said. I took a few calming breaths.
"I wonder what this is," he said as I returned to his side. He was holding the invoice.
"It's an invoice from the insurance company for your medication," I replied.
"Oh, okay," he said as he folded the invoice and placed it carefully back in its envelope.
"Oh! What does the insurance company want, I wonder?" he asked upon seeing the envelope he was holding in his hand. Alrighty, then.
Now, I know you have a helpful suggestion for me as to how I can handle the situation differently in the future; however, what I'm trying to do is help you understand why I'm frustrated sometimes. So, stifle it. Thank you.
Why do I bother, when I know he isn't going to remember, anyway? Because I want to treat him with the same respect and kindness and decency that most of us would appreciate receiving from others. Even if he doesn't remember that, either.
This evening, there were two pieces of mail that were of particular interest. One was a very kind invitation to an event we will unfortunately not be able to attend. The other was a bill.
"Who's that?" he asked in reference to the invitation, having taken out each piece that was in the envelope, examined it carefully, and returned it to the envelope. I tried to explain to him that it was an invitation to a friend's graduation and party, but I wasn't able to help him remember who the person was. Several times. At any rate, I placed the invitation on my bulletin board (okay, the refrigerator door) to serve as a reminder to send a card. He promptly accused me of taking the mail away before he'd even had a chance to see it. I gave the envelope back to him, and he reviewed it again, and asked me the same question again, and accused me of taking the mail away before he could see it again when I placed it back on the refrigerator door. This process was repeated several times, and then attention shifted to the invoice. Take it out. Read it. Explain it. Put it back. Take it out. Read it. Explain it. Put it back.
I was in danger of becoming impatient, so I decided to remove myself from the situation for a moment or two. I reminded myself that he really couldn't remember what he had just seen or what he had just asked or what I had just said. I took a few calming breaths.
"I wonder what this is," he said as I returned to his side. He was holding the invoice.
"It's an invoice from the insurance company for your medication," I replied.
"Oh, okay," he said as he folded the invoice and placed it carefully back in its envelope.
"Oh! What does the insurance company want, I wonder?" he asked upon seeing the envelope he was holding in his hand. Alrighty, then.
Now, I know you have a helpful suggestion for me as to how I can handle the situation differently in the future; however, what I'm trying to do is help you understand why I'm frustrated sometimes. So, stifle it. Thank you.
Why do I bother, when I know he isn't going to remember, anyway? Because I want to treat him with the same respect and kindness and decency that most of us would appreciate receiving from others. Even if he doesn't remember that, either.
Thursday, March 19, 2015
I Like Your Boobs
Caution to the kids: This could get graphic. You might not want to read it.
Lately, during our late-night discussion of how long we've been married, how many kids we have, what they're all up to, etc., my husband has been giving me "the look." The amorous one. He might not be too sure who I am all the time, but he thinks I'm hot. And he wants to be with me in the biblical sense. (Kids, if you're still reading, it's on you.)
As his filters are coming down, he's becoming much more direct about his feelings for me. He tells me he loves me, and he makes no bones about admiring my anatomy. He's the hormone-driven guy with the fast car your mother warned you about. (How am I doing, kids? Are you embarrassed yet?)
Well, okay, that might have been a mild exaggeration. It would be more accurate to say that this new openness in communication has been a long time coming and is kind of a pleasant surprise, even if he might not remember that it happened.
"Later" (euphemism for the sake of the kids), the other night, I put my head on his shoulder. He wrapped his arms around me and asked me if I was happy. I told him I wish it had always been like this. He looked at me with puppy dog eyes, smiled gently, and said sweetly, in his very best "I'm trying not to appear weird" voice:
"And you are...?"
Okie dokie.
Lately, during our late-night discussion of how long we've been married, how many kids we have, what they're all up to, etc., my husband has been giving me "the look." The amorous one. He might not be too sure who I am all the time, but he thinks I'm hot. And he wants to be with me in the biblical sense. (Kids, if you're still reading, it's on you.)
As his filters are coming down, he's becoming much more direct about his feelings for me. He tells me he loves me, and he makes no bones about admiring my anatomy. He's the hormone-driven guy with the fast car your mother warned you about. (How am I doing, kids? Are you embarrassed yet?)
Well, okay, that might have been a mild exaggeration. It would be more accurate to say that this new openness in communication has been a long time coming and is kind of a pleasant surprise, even if he might not remember that it happened.
"Later" (euphemism for the sake of the kids), the other night, I put my head on his shoulder. He wrapped his arms around me and asked me if I was happy. I told him I wish it had always been like this. He looked at me with puppy dog eyes, smiled gently, and said sweetly, in his very best "I'm trying not to appear weird" voice:
"And you are...?"
Okie dokie.
Sunday, February 15, 2015
I Only Lost Him Once!
Traveling with someone who has Alzheimer's can be a challenge; but, at least at this stage, it can still be done. Each time we go somewhere, though, I'm reminded that it definitely isn't getting easier!
For instance, a cruise ship stop in Victoria, British Columbia, was only going to be for half a day. The morning half. I awoke bright and early (for being on vacation). The ship had already docked, and I wanted to make sure we would have plenty of time to go exploring on foot. We like to do that when we don't have an excursion planned. You see so much more of a place when walking, noticing little details and getting a feel for its pace and energy and people. But all of that is what I usually go into in Adventures in Paradise, so on with my story.
My husband was still sleeping soundly. Rather than waking him and making him nervous by encouraging him (cough, cough) to get ready in a hurry, I left little post-it notes on every mirror, telling him I was going up to the buffet (Deck 14) and would be back with his breakfast. I even took the elevator instead of the stairs, thinking it would be quicker. But it took the same amount of time.
At the buffet, I realized it would be impossible for me to carry two full trays down to Deck 10, so I grabbed a couple of things for myself, sat with some of our evening tablemates while I wolfed down my food, and then prepared a nice breakfast tray for him.
Having successfully navigated the trip to our room without spilling anything, I opened the door cheerfully and said, "Good morning!" But there was nobody there. No sign of him. No note from him, either. Minor panic mode!
I dashed to the elevator banks, but so many people were going up and down by this time that it was just faster to take the stairs back up to Deck 14. I thought perhaps he would be at the buffet, looking for me. No hubster there. Not by the pool. Not by the hot tubs. Not on the other side of the buffet.
I flew back down the stairs to our room, thinking he might have come back. Nope. What to do? What to do? The gangway was open, and I could see that people were leaving the ship.
I raced down the stairs to Deck 5 -- again, the elevators were too slow with everyone coming down at once to get off the ship -- and panted over to the young man who was assigned to the exit.
"You can't leave the ship without a passport, right, since this is Canada?" I asked hopefully.
"Who told you that? Of course not! You just need your cruise card, ma'am," he responded helpfully. I envisioned my husband on the dock, looking for me. And then I envisioned him walking away, looking for me. And then I envisioned what would happen if I couldn't find him. I started to hyperventilate.
"Perhaps you can check with the front desk? They will be able to verify that he hasn't left the ship. As far as I know, he is still on board," the young man said, doing his best to be reassuring. But my head was spinning and my heart was pounding, so he might have said, "Geez, lady, why are you reacting like that to the good news that you can leave the ship without your passport?!"
For the first time in the entire cruise, there was a long line at the help desk. Not now! I stood impatiently at the end of the queue, shifting from one foot to the other as those in front of me took forever to transact their business. Why were they taking so long? I'd been looking for him for an hour at this point. Finally, it was my turn.
I almost made it all the way to the counter before exclaiming, "I can't find my husband!"
"Don't worry, ma'am. He'll turn up soon," was the calm reply, "This sort of thing happens all the time."
"You don't understand..."
As I explained the situation, the crew went into overdrive. There was confirmation that my husband hadn't left the ship.
"He should be easy to find," they reassured me, "He'll be looking lost."
"No, he won't. He'll be looking like he's looking for someone."
Moments later, a photo of my husband had been distributed to various staff members with instructions to "find this man." I was asked to return to the room to wait. Again, the elevators were too slow, so I went up the stairs. I was getting a pretty good workout, at least. And, about a half hour later, there he was, coming down the hallway with a ship's officer.
"Oh, look! This is your room, isn't it, sir?"
"Yes, I think so. Oh, there's my wife! Where have you been? I've been going up and down all the hallways, looking for you!"
I was so relieved, all I could do was wrap my arms around him and weep.
For instance, a cruise ship stop in Victoria, British Columbia, was only going to be for half a day. The morning half. I awoke bright and early (for being on vacation). The ship had already docked, and I wanted to make sure we would have plenty of time to go exploring on foot. We like to do that when we don't have an excursion planned. You see so much more of a place when walking, noticing little details and getting a feel for its pace and energy and people. But all of that is what I usually go into in Adventures in Paradise, so on with my story.
 |
| Photo by Chris. See the nice breakfast I prepared? |
At the buffet, I realized it would be impossible for me to carry two full trays down to Deck 10, so I grabbed a couple of things for myself, sat with some of our evening tablemates while I wolfed down my food, and then prepared a nice breakfast tray for him.
 |
| Photo by Chris. Panic-inducing empty bed. |
I dashed to the elevator banks, but so many people were going up and down by this time that it was just faster to take the stairs back up to Deck 14. I thought perhaps he would be at the buffet, looking for me. No hubster there. Not by the pool. Not by the hot tubs. Not on the other side of the buffet.
I flew back down the stairs to our room, thinking he might have come back. Nope. What to do? What to do? The gangway was open, and I could see that people were leaving the ship.
I raced down the stairs to Deck 5 -- again, the elevators were too slow with everyone coming down at once to get off the ship -- and panted over to the young man who was assigned to the exit.
"You can't leave the ship without a passport, right, since this is Canada?" I asked hopefully.
"Who told you that? Of course not! You just need your cruise card, ma'am," he responded helpfully. I envisioned my husband on the dock, looking for me. And then I envisioned him walking away, looking for me. And then I envisioned what would happen if I couldn't find him. I started to hyperventilate.
"Perhaps you can check with the front desk? They will be able to verify that he hasn't left the ship. As far as I know, he is still on board," the young man said, doing his best to be reassuring. But my head was spinning and my heart was pounding, so he might have said, "Geez, lady, why are you reacting like that to the good news that you can leave the ship without your passport?!"
For the first time in the entire cruise, there was a long line at the help desk. Not now! I stood impatiently at the end of the queue, shifting from one foot to the other as those in front of me took forever to transact their business. Why were they taking so long? I'd been looking for him for an hour at this point. Finally, it was my turn.
I almost made it all the way to the counter before exclaiming, "I can't find my husband!"
"Don't worry, ma'am. He'll turn up soon," was the calm reply, "This sort of thing happens all the time."
"You don't understand..."
As I explained the situation, the crew went into overdrive. There was confirmation that my husband hadn't left the ship.
"He should be easy to find," they reassured me, "He'll be looking lost."
"No, he won't. He'll be looking like he's looking for someone."
Moments later, a photo of my husband had been distributed to various staff members with instructions to "find this man." I was asked to return to the room to wait. Again, the elevators were too slow, so I went up the stairs. I was getting a pretty good workout, at least. And, about a half hour later, there he was, coming down the hallway with a ship's officer.
"Oh, look! This is your room, isn't it, sir?"
"Yes, I think so. Oh, there's my wife! Where have you been? I've been going up and down all the hallways, looking for you!"
I was so relieved, all I could do was wrap my arms around him and weep.
Thursday, January 29, 2015
What Time Is It?
This morning, we had to stop at the store on our way to a meeting. I was keeping a close eye on the clock, as being on time was important. We left the house at ten after or so and headed to the store. It's five minutes from the house.
"What time is it?" I asked as I parked the car.
He checked his watch. "9:41," he answered.
"9:41?!" I couldn't imagine how I could have been so wrong about the time when we left the house. Now, I was in a big hurry!
"9:41. Are you sure?"
"Yes," he said, showing me his watch to emphasize the point. "The little hand is on the 9, see? And the big hand is just past the 4. It's 9:41."
Okay. I was relieved that it was only 9:21, and I thought maybe he was just teasing me, as he is wont to do. But I wasn't sure.
So, as we were leaving the store after finishing our shopping, I asked him again what time it was. He glanced at his watch.
"It's 9:82. See?" And he turned his wrist to show me the time. Yep. 9:42.
I think it might be time for a digital watch.
"What time is it?" I asked as I parked the car.
He checked his watch. "9:41," he answered.
"9:41?!" I couldn't imagine how I could have been so wrong about the time when we left the house. Now, I was in a big hurry!
"9:41. Are you sure?"
"Yes," he said, showing me his watch to emphasize the point. "The little hand is on the 9, see? And the big hand is just past the 4. It's 9:41."
Okay. I was relieved that it was only 9:21, and I thought maybe he was just teasing me, as he is wont to do. But I wasn't sure.
So, as we were leaving the store after finishing our shopping, I asked him again what time it was. He glanced at his watch.
"It's 9:82. See?" And he turned his wrist to show me the time. Yep. 9:42.
I think it might be time for a digital watch.
Saturday, January 10, 2015
Precious Memories
As I've mentioned before, my husband and I have a long common history. This has been a very valuable tool in helping him to remember things, because I was there, too.
Some of the memories are fun to relive together, looking at photos and being reminded of little details that get lost in the course of daily life, anyway. He probably doesn't actually remember being in some of the exotic locations we've visited, let alone the ordinary ones. But if I show him a photo of a place we've been together, he seems to connect with it. Or maybe he just likes the picture.
My mom's been having health issues of late. Not unusual for a woman in her 90's. But whenever we discuss my mother's health, the subject of his own parents' deaths comes up. He says he doesn't remember how his mother died, so I fill in the blanks for him. She died of cancer at the age of 49. In the early 70's. And then he says he doesn't remember what happened to his father. I remind him that his father was murdered at the age of 65. In the mid-80's. He asks if the responsible parties were arrested and prosecuted. I assure him that they were. He wants to know what has happened to them. One died in prison, the other is still in prison. Knowing this seems to calm him and bring him peace.
Lately, he's even been able to shed a few tears in association with these painful memories. This is something he didn't necessarily allow himself to do before, when his memories were properly filed in cabinets that worked. His emotions are not as tightly controlled as they once were.
This evening, when I was answering his usual questions, I said, "Wow. What would it be like if I wasn't here to answer these questions for you?"
He replied, "I would be a lot less happy."
So would I.
Some of the memories are fun to relive together, looking at photos and being reminded of little details that get lost in the course of daily life, anyway. He probably doesn't actually remember being in some of the exotic locations we've visited, let alone the ordinary ones. But if I show him a photo of a place we've been together, he seems to connect with it. Or maybe he just likes the picture.
My mom's been having health issues of late. Not unusual for a woman in her 90's. But whenever we discuss my mother's health, the subject of his own parents' deaths comes up. He says he doesn't remember how his mother died, so I fill in the blanks for him. She died of cancer at the age of 49. In the early 70's. And then he says he doesn't remember what happened to his father. I remind him that his father was murdered at the age of 65. In the mid-80's. He asks if the responsible parties were arrested and prosecuted. I assure him that they were. He wants to know what has happened to them. One died in prison, the other is still in prison. Knowing this seems to calm him and bring him peace.
Lately, he's even been able to shed a few tears in association with these painful memories. This is something he didn't necessarily allow himself to do before, when his memories were properly filed in cabinets that worked. His emotions are not as tightly controlled as they once were.
This evening, when I was answering his usual questions, I said, "Wow. What would it be like if I wasn't here to answer these questions for you?"
He replied, "I would be a lot less happy."
So would I.
There's a Guest Room
I've been down for the count with a terrible case of the flu this week, so there's been more opportunity than usual for me to notice my husband's newest idiosyncrasies. I will focus here on one that's kind of cute, if seen in the right light. Right now, it's a "brain hiccup" rather than a permanent fixture; however, the horizon looks an awful lot nearer than it once did.
We were working on a jigsaw puzzle (a 100-piece one) together, and he confused me with one of his sisters. He realized he'd made a mistake, so he called me by the other sister's name. So I looked at him and asked him if he knew who I was. He said he'd been a little confused, but he knew who I was, and he said my name.
Then he said, "There are a couple of guest rooms, if you want to spend the night."
I said, "What?!"
Sometimes, it's hard to think before reacting. I took a breath and said, "Of course I'm going to spend the night. I live here."
On the plus side, he seemed delighted that I was staying. And then he seemed relieved to know that, in fact, we are married (to each other). I was happy to know that, should I have been a stranger, he would not have slept with me. Necessarily.
He then started his usual evening questioning. When did we meet? How old am I? How old are you? How long have we been married? Were you with me when I lived in [insert name of place]? What do you think of me? And so on. He is trying to fit the puzzle pieces of his memory together, and I find it interesting that his memory is stuck in the places where it is stuck.
I've noticed lately that he is beginning to have trouble expressing himself and relies on me to know and understand what he's trying to say, because he's lost the rest of the thought before having a chance to say it. It's a sad thing.
We were working on a jigsaw puzzle (a 100-piece one) together, and he confused me with one of his sisters. He realized he'd made a mistake, so he called me by the other sister's name. So I looked at him and asked him if he knew who I was. He said he'd been a little confused, but he knew who I was, and he said my name.
Then he said, "There are a couple of guest rooms, if you want to spend the night."
I said, "What?!"
Sometimes, it's hard to think before reacting. I took a breath and said, "Of course I'm going to spend the night. I live here."
On the plus side, he seemed delighted that I was staying. And then he seemed relieved to know that, in fact, we are married (to each other). I was happy to know that, should I have been a stranger, he would not have slept with me. Necessarily.
He then started his usual evening questioning. When did we meet? How old am I? How old are you? How long have we been married? Were you with me when I lived in [insert name of place]? What do you think of me? And so on. He is trying to fit the puzzle pieces of his memory together, and I find it interesting that his memory is stuck in the places where it is stuck.
I've noticed lately that he is beginning to have trouble expressing himself and relies on me to know and understand what he's trying to say, because he's lost the rest of the thought before having a chance to say it. It's a sad thing.
Saturday, January 3, 2015
Unloading the Groceries
We went to Costco today, and included in our purchase was a set of three plastic bins for storage, nested together. I filled the top one with towels and other light items before placing it in the back seat of the car. Other items were placed in the trunk, loose, because they hadn't been boxed. When we got home, I removed the bins from the vehicle first. Here's our conversation:
Me: "I'm going to take this inside, unload it, and bring it back out so we can load up the other stuff."
Him: "What other stuff?"
Me: "The stuff that's in the trunk."
Him: "Oh."
Me: "I'll be right back."
Him: "Why?"
Me: "So we can unload the rest of the stuff."
I take the containers inside, unload them, and go right back outside. He is struggling up the drive with a couple of boxed items.
Him: "I think I dropped a box."
He sees that I am carrying the plastic bins.
Him: "What are you doing with those?"
Me: "I'm going to fill them back up."
Him: "I dropped a box."
He takes his armload into the house. I see the box with the milk cartons on the ground. The box is split open, but nothing is spilling out. I go ahead and fill up the plastic bin with the other purchases. He comes back outside. This is both surprising and pleasing, as he normally would have forgotten that we're in the middle of doing something.
Him: "Is that all?"
Me: "Yes, except for the box you dropped." (I say it this way, thinking he will immediately know where to look.)
Him: "What box? I didn't drop anything." (He is not being defensive. He really doesn't remember dropping it, even though it just happened, and he just told me about it.)
Me: "It's okay. Nothing is spilling. It's right over there."
He starts to lift the box with one hand. I remind him that it's broken and needs to be picked up with both hands so the cartons don't slip out. He is insulted that I would think he needs to be reminded of this. Sigh.
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