I'm a little sad this morning. In yesterday's post, I let my hair down. I let my guard down. I opened my Soul to cyberspace, AKA, the Internet. I let readers know just how scared I have become.
Later, during the day, I thought about my post. In some respects, I called myself a cry baby. In other respects I called myself being brutally honest. Hey, this is my life, whether it be sniff, sniff, boo hoo or whatever you'd want to call it, at least this blog is pure in thought, honesty and straight to the point.
While other blogs are entertaining, my blog is not. My blog deals with the everyday life of a woman who is caring for her dying husband. A husband too young to die.
As I was getting husband into bed last night, he asked me what was for dinner. I told him he already had dinner. He asked me what did he eat. I told him. He looked at me and said, "I don't remember eating dinner. Are you sure I ate?"
He told me not to turn off the TV, he wanted to see the weather. I told him the news was over with. He insisted that they never showed the weather. Told me to call the TV station in the morning because they forgot to show the weather. I said I would.
He asked me what is the season we are in now. I told him late Winter, early Spring. He then asked me to explain what Seasons are.
The "man" is still here. He glances at the closet a lot. When he does, he kind of acknowledges the "man", as if to say, "I know you're there", then will turn in bed.
While getting him into bed, I had to lift his legs. They are so stiff. I asked him to bend his legs. He said, "I can't anymore". I bent them myself. They hardly bend anymore.
A little glimpse of what I do before going to bed each night.
Oh, how I sometimes wish my blog was more like other blogs. I wish life were that simple for us.
Today, I wish I could walk in someone else's shoes. I don't like the way mine are fitting lately.
Husband's last camping trip
Thursday, February 28, 2013
Wednesday, February 27, 2013
Shrinking
I think I'm on Day 3 of my laptop holding this charge. Hope it holds out until I can get it fixed. Or, I find hidden money and buy a new one. What are the odds?
Husband is so-so. He goes in and out of reality. Slept a few hours yesterday. Woke up and was restless the rest of the day. He did not make and re-make the bed. He did, however, get in the closet, but didn't pull everything out like he usually does.
He told me he wants to go see his dad today. I said OK, not really wanting to go out, it's so cold. Then, he said, "If I go, do you think "he" will be OK?" I asked who? He looked at me sideways, motioned for the closet and said, "Him".
I have decided to go along with this now. So, I told him the "man" would be fine here.
Reminds me of when my Marie was little. She had two imaginary friends named Cindy and Sandy. I played along with her about them. Here I am, some years later, going along with the "man" thing, only it's not a child I'm dealing with. It's my husband.
To him, the "man" is real. Before, I would try to explain to him that the "man" was not real. It only upset and confused him further. Since I've been going along with it, he seems less confused.
If you can't beat em', join em'.
Oh, I don't like this stage. It's very scary. I know it's only going to get worse from here on out. I don't think I'm ready for that. I think about it, but then, knowing what I know about the final stage, I go somewhere else in my mind. I don't want to deal with it. I'm putting off what I already know will happen. And I just cannot go there, yet. Give me a few minutes to saturate all of this.
In our 3 year journey, I have been prepared for everything. I have taken it all in stride. Dealt with it. Didn't shrink away from it.
But this? I just cannot go there. Not yet. It's too soon for me. I need to prepare for the final battle. I tell myself that every day. I gear up for it. I tell myself I am strong, I can handle it. I'll get through it.
Then, husband wakes up and asks me where the "man" is. He tells me the "man" is wearing his clothes. He tells me the "man" is bugging him. He says the "man" is watching him all the time.
As I stand there listening to him, my mind closes. I don't hear him anymore. I don't want to hear this. It scares me. I feel so alone. I want my mommy. I want to run away.
I've got to get strong. He needs me. He depends on me. I can't find my "big girl pants".
For the first time in my life, I feel like a shrinking violet. Wilting from too much sun. No water. I need life breathed into me.
Someone, please find my "big girl pants", please.
Husband is so-so. He goes in and out of reality. Slept a few hours yesterday. Woke up and was restless the rest of the day. He did not make and re-make the bed. He did, however, get in the closet, but didn't pull everything out like he usually does.
He told me he wants to go see his dad today. I said OK, not really wanting to go out, it's so cold. Then, he said, "If I go, do you think "he" will be OK?" I asked who? He looked at me sideways, motioned for the closet and said, "Him".
I have decided to go along with this now. So, I told him the "man" would be fine here.
Reminds me of when my Marie was little. She had two imaginary friends named Cindy and Sandy. I played along with her about them. Here I am, some years later, going along with the "man" thing, only it's not a child I'm dealing with. It's my husband.
To him, the "man" is real. Before, I would try to explain to him that the "man" was not real. It only upset and confused him further. Since I've been going along with it, he seems less confused.
If you can't beat em', join em'.
Oh, I don't like this stage. It's very scary. I know it's only going to get worse from here on out. I don't think I'm ready for that. I think about it, but then, knowing what I know about the final stage, I go somewhere else in my mind. I don't want to deal with it. I'm putting off what I already know will happen. And I just cannot go there, yet. Give me a few minutes to saturate all of this.
In our 3 year journey, I have been prepared for everything. I have taken it all in stride. Dealt with it. Didn't shrink away from it.
But this? I just cannot go there. Not yet. It's too soon for me. I need to prepare for the final battle. I tell myself that every day. I gear up for it. I tell myself I am strong, I can handle it. I'll get through it.
Then, husband wakes up and asks me where the "man" is. He tells me the "man" is wearing his clothes. He tells me the "man" is bugging him. He says the "man" is watching him all the time.
As I stand there listening to him, my mind closes. I don't hear him anymore. I don't want to hear this. It scares me. I feel so alone. I want my mommy. I want to run away.
I've got to get strong. He needs me. He depends on me. I can't find my "big girl pants".
For the first time in my life, I feel like a shrinking violet. Wilting from too much sun. No water. I need life breathed into me.
Someone, please find my "big girl pants", please.
Tuesday, February 26, 2013
GPS Tracking System
Yesterday was spent quietly at home. The snow storm seemed to subside, even though some parts of freeways remained closed. Glad I didn't go in to work as a fill-in. Actually, after the weekend I had, I didn't want to leave husband anyway. Kristen offered to come up, but, I didn't feel comfortable in leaving him.
He was still awake when I went to bed. And, "it" happened again. As I was turning the covers back on my side of the bed, I looked to find husband staring at me. I told him to turn off his light and the TV. He kept staring, not saying anything. It hit me. Crap, he doesn't recognize me. That sent chills up my back. I told him again to turn the light and TV off. He never said a word. Once I got into bed, I asked him to hand me the remote (he sometimes forgets how the remote works). He handed it to me, sat up, looked once again at me, turned over and turned off the light. He did not say, "Who are you?", but, it was written all over his face.
What a crappy way to end the day.
He told me yesterday what he wanted for his birthday. Now, his birthday is in May, and honestly? I never thought he'd make it to his 48th year. Never. If he makes it, he will be the first one in his family affected by Alzheimer's to have made it to 48 years. The rest all died by age 47. Anyway, he told me he wanted a GPS System. I sat there stunned. My first thought was, "What do you want with a GPS?," but, of course I did not say it. Man, he was serious. Said it would help him in the city. I just nodded my head. No use in saying anything more.
Later, I got to thinking. Wouldn't it be wonderful if someone would invent a GPS for Alzheimer's patients? Not for driving, but, for their brain. Imagine it, won't you? If they forget who you are, the GPS would say, "That is your wife". First thing in the morning it would tell them what day it is. What time it is. What month it is. What season it is. What year it is. Where they are. If they forgot, this system would remind them. If they had questions, they could ask their own personal GPS system. They would get their answers.
Sound crazy? Try living with someone you love that has Alzheimer's. Wouldn't seem so crazy.
A GPS Tracking System for the Mind. How wonderful indeed.
He was still awake when I went to bed. And, "it" happened again. As I was turning the covers back on my side of the bed, I looked to find husband staring at me. I told him to turn off his light and the TV. He kept staring, not saying anything. It hit me. Crap, he doesn't recognize me. That sent chills up my back. I told him again to turn the light and TV off. He never said a word. Once I got into bed, I asked him to hand me the remote (he sometimes forgets how the remote works). He handed it to me, sat up, looked once again at me, turned over and turned off the light. He did not say, "Who are you?", but, it was written all over his face.
What a crappy way to end the day.
He told me yesterday what he wanted for his birthday. Now, his birthday is in May, and honestly? I never thought he'd make it to his 48th year. Never. If he makes it, he will be the first one in his family affected by Alzheimer's to have made it to 48 years. The rest all died by age 47. Anyway, he told me he wanted a GPS System. I sat there stunned. My first thought was, "What do you want with a GPS?," but, of course I did not say it. Man, he was serious. Said it would help him in the city. I just nodded my head. No use in saying anything more.
Later, I got to thinking. Wouldn't it be wonderful if someone would invent a GPS for Alzheimer's patients? Not for driving, but, for their brain. Imagine it, won't you? If they forget who you are, the GPS would say, "That is your wife". First thing in the morning it would tell them what day it is. What time it is. What month it is. What season it is. What year it is. Where they are. If they forgot, this system would remind them. If they had questions, they could ask their own personal GPS system. They would get their answers.
Sound crazy? Try living with someone you love that has Alzheimer's. Wouldn't seem so crazy.
A GPS Tracking System for the Mind. How wonderful indeed.
Monday, February 25, 2013
The "loudness" of it all
I was supposed to go in to the office again to fill in. However, it started snowing last night, and, by this morning, the roads were snow packed and icy. No way was I going to even attempt it. So, here I am, snug and warm in my little apartment. Luckily, my old boss understood. Hated to let her down, but, I don't do well in snow and ice.
And, my laptop is holding a charge! So, here I am. Don't know how much longer I can keep monkeying around with this before it goes completely out, but, I'll take it for now. I don't have money in my budget to get a new laptop.
Husband has not been doing well. He has developed these little quirks and some really odd behavior. Watching him makes me jittery. He has become obsessed with making the bed again. He goes through a ritual every night now. I get him into bed, he gets out and makes it, over and over. It's maddening to watch this.
He also re-arranges our closet. Every. Single. Afternoon. He will pull everything out and put it back in the same place. We're talking about 2-3 hours! Oy. I don't go in there to stop him. I let him do his thing. The sad part is, I can see the struggle his brain is going through. It's so jumbled up in there, I think he's trying to re-arrange, thinking it will help his brain. Trouble is, he doesn't re-arrange, just moves it all out and puts it all back.
The "Man" is back. He now talks to "him". It's not talk you can understand, just a lot of mumbling, but, I can hear him doing this. He has been angry at me since Friday night. I think he's scared.
I am taking him in for his Psychiatric Evaluation next Monday. I am going to ask for a stronger mood stabilizer. The one he takes does no good anymore. Or at least, up the dose.
This whole weekend was not good. I've watched him struggle. I hate this. This dread in my chest does not go away. It's a constant reminder of what is happening. I get up each morning and look at husband. There he is, sound asleep, eyes squinted shut. I think of the battle going on inside his brain. I can almost hear it. So quiet, it's loud.
I know, sounds crazy, huh? To me, it makes sense. The struggle, the heartbreak, the falling down, the talking to a "man" that isn't there, the total memory lapse, the eyes, the everything.
Sometimes, it's all too much for me to bear.
And, my laptop is holding a charge! So, here I am. Don't know how much longer I can keep monkeying around with this before it goes completely out, but, I'll take it for now. I don't have money in my budget to get a new laptop.
Husband has not been doing well. He has developed these little quirks and some really odd behavior. Watching him makes me jittery. He has become obsessed with making the bed again. He goes through a ritual every night now. I get him into bed, he gets out and makes it, over and over. It's maddening to watch this.
He also re-arranges our closet. Every. Single. Afternoon. He will pull everything out and put it back in the same place. We're talking about 2-3 hours! Oy. I don't go in there to stop him. I let him do his thing. The sad part is, I can see the struggle his brain is going through. It's so jumbled up in there, I think he's trying to re-arrange, thinking it will help his brain. Trouble is, he doesn't re-arrange, just moves it all out and puts it all back.
The "Man" is back. He now talks to "him". It's not talk you can understand, just a lot of mumbling, but, I can hear him doing this. He has been angry at me since Friday night. I think he's scared.
I am taking him in for his Psychiatric Evaluation next Monday. I am going to ask for a stronger mood stabilizer. The one he takes does no good anymore. Or at least, up the dose.
This whole weekend was not good. I've watched him struggle. I hate this. This dread in my chest does not go away. It's a constant reminder of what is happening. I get up each morning and look at husband. There he is, sound asleep, eyes squinted shut. I think of the battle going on inside his brain. I can almost hear it. So quiet, it's loud.
I know, sounds crazy, huh? To me, it makes sense. The struggle, the heartbreak, the falling down, the talking to a "man" that isn't there, the total memory lapse, the eyes, the everything.
Sometimes, it's all too much for me to bear.
Friday, February 22, 2013
Going back
Has it really been a week since I've posted? Still having issues with my laptop. I get on quick in the morning, before the battery goes dead, then, hope and pray it will charge. I am so lost without my laptop.
My old boss asked me if I'd like to work today. So, here I am, at my old job, nothing much to do, so thought I'd take advantage of Computers and post!! She asked me if I'd fill in on Monday as well. Not only will you get ANOTHER post from me, but, the extra money sure won't hurt at this time.
We had a really good week, until I opened my big mouth yesterday. Thought for sure I'd get one good week. Then, out of the blue yesterday, the delusions came back. My poor husband. He's so lost.
Kristen came up last night, spent the night and is sitting with husband today. Husband came into the living room last night and said, "I have no clean clothes left. That man has been wearing my clothes." Of course, I knew who he was talking about, but, poor Kristen. Her face fell, I looked over at her and said, "Don't you dare fall apart." I looked at husband and said, "No, honey, you have plenty of clean clothes." He looked at me, giggled and said, "Oh yes he has."
It's creepy, that laugh of his. From then on, he was restless, kept getting into the closet, trying to find the man in the closet. I got him into bed, only to have him get back out 20 minutes later and make the bed. Ugh. Here we go again, I thought.
He slept good last night. I used to love night time. Crawl into bed, letting sleep come on, relaxing. Not anymore. The delusions usually happen at night, when it gets dark. I can feel the darkness closing in on me, bracing myself for what is to come. And, it usually comes.
I'm sitting here at work, looking out the office window, watching snow fall. It looks so peaceful. It's
quiet in the office now. Kristen says husband is sleeping this afternoon. Takes me back to when I used to work here. I had a somewhat normal life. Now, it's all gone. I was looking over contracts in the files a little while ago. I came across some I had done. My signature. The dates. My handwriting looked so normal back then. It was all OK, back then.
Tonight, around 5, I will go home. To a husband who requires round the clock care. A husband who does not recognize me sometimes. A totally different life now.
Oh, to go back to those contracts a few years ago, to see my signature and the dates.
It all seemed so simple back then.
My old boss asked me if I'd like to work today. So, here I am, at my old job, nothing much to do, so thought I'd take advantage of Computers and post!! She asked me if I'd fill in on Monday as well. Not only will you get ANOTHER post from me, but, the extra money sure won't hurt at this time.
We had a really good week, until I opened my big mouth yesterday. Thought for sure I'd get one good week. Then, out of the blue yesterday, the delusions came back. My poor husband. He's so lost.
Kristen came up last night, spent the night and is sitting with husband today. Husband came into the living room last night and said, "I have no clean clothes left. That man has been wearing my clothes." Of course, I knew who he was talking about, but, poor Kristen. Her face fell, I looked over at her and said, "Don't you dare fall apart." I looked at husband and said, "No, honey, you have plenty of clean clothes." He looked at me, giggled and said, "Oh yes he has."
It's creepy, that laugh of his. From then on, he was restless, kept getting into the closet, trying to find the man in the closet. I got him into bed, only to have him get back out 20 minutes later and make the bed. Ugh. Here we go again, I thought.
He slept good last night. I used to love night time. Crawl into bed, letting sleep come on, relaxing. Not anymore. The delusions usually happen at night, when it gets dark. I can feel the darkness closing in on me, bracing myself for what is to come. And, it usually comes.
I'm sitting here at work, looking out the office window, watching snow fall. It looks so peaceful. It's
quiet in the office now. Kristen says husband is sleeping this afternoon. Takes me back to when I used to work here. I had a somewhat normal life. Now, it's all gone. I was looking over contracts in the files a little while ago. I came across some I had done. My signature. The dates. My handwriting looked so normal back then. It was all OK, back then.
Tonight, around 5, I will go home. To a husband who requires round the clock care. A husband who does not recognize me sometimes. A totally different life now.
Oh, to go back to those contracts a few years ago, to see my signature and the dates.
It all seemed so simple back then.
Friday, February 15, 2013
My Familiar Stranger
Have to get this up quick. Called the Geek Squad at Best Buy. Told them symptoms of my laptop. They said it is the charging post. They don't repair it, but told me to call another place. It's going to cost me around $170 for the repair. Guess it's better than buying a new one. I don't have the money right now, so, I'll have to baby this along until I do.
As far as Valentine's Day, well, it was spent quiet. Fine with me.
UNM Hospital called. Psychiatry dept, that is. She said that Dr A had referred. I asked her why and she said they do that during the Final Stage. Dr A had mentioned it, but, it was a surprise. I have to take him in on March 4th. Said she would be mailing the papers. Kind of deflated my already deflated day.
It's funny how one can adjust though. No, this is not a normal life I'm living now. But, it's my life. I've had 3 years to completely change my way of living and thinking. It's been gradual with the last 5 months coming at me full speed. I'm still reeling from all of this.
This total destruction on husband is not pretty. He is like a helpless baby. Depends on me for everything. As I was getting ready for bed last night, husband had fallen asleep with his glasses on. I took them gently off his face when he opened his eyes. He had no recognition of me, but there was something else in his eyes. It was the look of total pain and confusion. It almost brought me to my knees. I hushed him, told him to go back to sleep, which he did. But that look he had given me broke my heart.
He has drifted further and further away from me. It's hard watching this, but, I know that this is part of the process. And progression.
My neighbor, Michelle, asked me the other night how I do it. I pointed to the sky and said you'd be surprised at what you can do. Not only does God give me the strength, He is riding this out with me. He's here, don't ever think for a moment that He is not. She said she admired my strength and said if there is ever anything she could do, don't hesitate to ask. I asked her if she could give me a normal life. Poor thing, she broke into tears and gave me a big hug.
Husband is beginning to wake up. I never know what is in store for me or what damage has been done to him during the night. I usually know within 5 minutes of him waking up. I also have a new name for husband.
He's now referred as the Familiar Stranger.
As far as Valentine's Day, well, it was spent quiet. Fine with me.
UNM Hospital called. Psychiatry dept, that is. She said that Dr A had referred. I asked her why and she said they do that during the Final Stage. Dr A had mentioned it, but, it was a surprise. I have to take him in on March 4th. Said she would be mailing the papers. Kind of deflated my already deflated day.
It's funny how one can adjust though. No, this is not a normal life I'm living now. But, it's my life. I've had 3 years to completely change my way of living and thinking. It's been gradual with the last 5 months coming at me full speed. I'm still reeling from all of this.
This total destruction on husband is not pretty. He is like a helpless baby. Depends on me for everything. As I was getting ready for bed last night, husband had fallen asleep with his glasses on. I took them gently off his face when he opened his eyes. He had no recognition of me, but there was something else in his eyes. It was the look of total pain and confusion. It almost brought me to my knees. I hushed him, told him to go back to sleep, which he did. But that look he had given me broke my heart.
He has drifted further and further away from me. It's hard watching this, but, I know that this is part of the process. And progression.
My neighbor, Michelle, asked me the other night how I do it. I pointed to the sky and said you'd be surprised at what you can do. Not only does God give me the strength, He is riding this out with me. He's here, don't ever think for a moment that He is not. She said she admired my strength and said if there is ever anything she could do, don't hesitate to ask. I asked her if she could give me a normal life. Poor thing, she broke into tears and gave me a big hug.
Husband is beginning to wake up. I never know what is in store for me or what damage has been done to him during the night. I usually know within 5 minutes of him waking up. I also have a new name for husband.
He's now referred as the Familiar Stranger.
Thursday, February 14, 2013
Valentines Day
Have to get this post up fast as my battery is about to go out on my laptop and with the charger not making a connection, well, it could get ugly around here.
I woke up around 5 am to find husband sitting on the side of the bed. Just looking around. He was confused, but, didn't talk. He finally got back on the bed and is now asleep. Of course, once I saw that, I knew I was not going back to sleep. So, here I am.
Husband had a rough day yesterday. He couldn't find an item he had put in a different location. He was so agitated about that. I tried to help. He got very angry at me for helping. I left him to himself and started his breakfast. He finally came out and announced he had found what he was looking for. It was as I said. He had put it in a different spot and couldn't remember where that was. Heck, I've done that!!
The rest of the day was quiet. I went to Trader Joe's to get more coffee. I got out of the house for about 20 minutes. Whoo Hoo. Big outing for me.
Today is Valentine's Day. Happy Valentine's Day to all who celebrate. It's also two of my nephew's birthdays.
In this house, we don't celebrate Valentine's Day. Not a big deal to me. Some of the kids will call and wish me a happy day.
Husband used to get me special gifts on this day. They were always lovely and thoughtful gifts. This morning I thought back to those years with a good feeling. I have the memories of earlier days. Before Alzheimer's.
Yes. Memories.
Can't take that away.
Wishing you all a great day. I hope you will feel loved and special today.
I woke up around 5 am to find husband sitting on the side of the bed. Just looking around. He was confused, but, didn't talk. He finally got back on the bed and is now asleep. Of course, once I saw that, I knew I was not going back to sleep. So, here I am.
Husband had a rough day yesterday. He couldn't find an item he had put in a different location. He was so agitated about that. I tried to help. He got very angry at me for helping. I left him to himself and started his breakfast. He finally came out and announced he had found what he was looking for. It was as I said. He had put it in a different spot and couldn't remember where that was. Heck, I've done that!!
The rest of the day was quiet. I went to Trader Joe's to get more coffee. I got out of the house for about 20 minutes. Whoo Hoo. Big outing for me.
Today is Valentine's Day. Happy Valentine's Day to all who celebrate. It's also two of my nephew's birthdays.
In this house, we don't celebrate Valentine's Day. Not a big deal to me. Some of the kids will call and wish me a happy day.
Husband used to get me special gifts on this day. They were always lovely and thoughtful gifts. This morning I thought back to those years with a good feeling. I have the memories of earlier days. Before Alzheimer's.
Yes. Memories.
Can't take that away.
Wishing you all a great day. I hope you will feel loved and special today.
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