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.
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