I have been bookmarking last minute disabled vacations. I figure, if we have a couple of weeks, we will have several choices to pick from, for last minute travel.
But then right smack dab in the middle of planning for the future, the present happens.
I have been crying, Dennis has been worried. Dennis has to poop, the PCA isn't showing up for work. I do not feel well (haven't for a long time) because I am exhausted and really, really need some time off. I have a month until work is finished (and I do know that is nothing), but I am exhausted and ready to stop everything right now.
Dennis is waking up at least 5 times a night, and now the feeding pump buzzes 2 or 3 times a night. I should be able to get that down to one time, but for now, I am lacking sleep, patience and desire to do anything.
So I am taking the week off from work. 30 days until I am done, and I am taking a week off? It's not only best for me, but also best for the kids. Not only am I not at my best, but I am so on edge that I catch myself saying and doing things that are not like Ms. Ann! At home, we are used to Ann being stressed, but at work, not so much.
So for this week it is napping, television shows to dull my senses, and a bit of peace.
Until later,
Ann and Dennis
Showing posts with label Sleep disorders. Show all posts
Showing posts with label Sleep disorders. Show all posts
Wednesday, May 12, 2010
Sunday, March 28, 2010
Sleep, Interrupted Again
Dennis woke up at midnight with a mouth full of saliva. He decided he had to get up and sit in his wheel chair and move into the living room.
I do NOT like to be woken up in the middle of the night. I am not nice, as a matter of fact, I am down right mean when something wakes me before I have my full eight.
I don't know what I said, but Dennis told me this morning that I intimated that no judge in the world would convict me if I were to kill him. I agree that is an unacceptable thing to say, but sleep really is that important to me. There is also the fact that he fell when I was trying to transfer him from bed to wheel chair. I was half asleep and he was unmedicated - not a great combination.
From that moment forward neither of were going to get any sleep.
He coughed, cleared his throat and sighed heavily for 2 hours. Finally he decided he wanted to come back to bed. Then he coughed, cleared his throat and sighed heavily, but this time right next to me. I finally go up and tried to sleep on the futon.
That is when kitty decided to play with the plastic balls with bells inside. My sister brought these over at Christmas time, and Shiva has never played with them. But last night she had the two balls bouncing back and forth on the floor right next to where I was attempting to sleep.
This morning, when we reviewed the situation, I told Dennis I would try to be nicer about midnight wake-ups, but I would make no promises. After all, I am far from perfect.
Until later,
Ann and Dennis
PS, Yes, Lola. I was channeling Hendrix when I set up this new format.
I do NOT like to be woken up in the middle of the night. I am not nice, as a matter of fact, I am down right mean when something wakes me before I have my full eight.
I don't know what I said, but Dennis told me this morning that I intimated that no judge in the world would convict me if I were to kill him. I agree that is an unacceptable thing to say, but sleep really is that important to me. There is also the fact that he fell when I was trying to transfer him from bed to wheel chair. I was half asleep and he was unmedicated - not a great combination.
From that moment forward neither of were going to get any sleep.
He coughed, cleared his throat and sighed heavily for 2 hours. Finally he decided he wanted to come back to bed. Then he coughed, cleared his throat and sighed heavily, but this time right next to me. I finally go up and tried to sleep on the futon.
That is when kitty decided to play with the plastic balls with bells inside. My sister brought these over at Christmas time, and Shiva has never played with them. But last night she had the two balls bouncing back and forth on the floor right next to where I was attempting to sleep.
This morning, when we reviewed the situation, I told Dennis I would try to be nicer about midnight wake-ups, but I would make no promises. After all, I am far from perfect.
Until later,
Ann and Dennis
PS, Yes, Lola. I was channeling Hendrix when I set up this new format.
Saturday, January 23, 2010
ClonazePAM
One of the issues with MSA, and other movement disorders, involves sleep, or the lack there of. The symptoms include thrashing about, screaming and sleep talking. Dennis is not alone in this. I have heard from other care-givers that they have experienced the same problem.
Of course, this results in anyone else in the household from getting a good nights sleep, too.
I have mentioned all of this before, but I mention it again today because of the drug, ClonazePAM. I do not pretend to understand what the drug is all about, but it's a mild narcotic, a muscle relaxant, and also helps minimize the sleep disorders that Dennis exhibits. It also becomes useless after a while, and doses must be increased. It isn't covered my Medicare, but it is relatively cheap.
And I am taking it too.
My doctor prescribed it for me as an anti-anxiety drug, to be taken when I come home from work at night when needed. It does help me relax, let go of work, and focus on Dennis. It also helps me sleep better.
The last time Dennis was in the hospital, his doctor took him off of sleep medications. He felt they were a part of the problem in his infections - breathing, swallowing etc, may be inhibited by sleep drugs. Then we went to California, and for three nights I did not get a decent night's sleep. The fourth night, we both took the drug and we both slept better.
I am not endorsing any drug here. I am simply mentioning that sometimes there are answers out in this world that are simple. This little narcotic, legal narcotic, has improved our lives. There are still nights that Dennis wakes me up, but now I am able to fall back to sleep once again. And for me, that is priceless.
Until later,
Ann and Dennis
Of course, this results in anyone else in the household from getting a good nights sleep, too.
I have mentioned all of this before, but I mention it again today because of the drug, ClonazePAM. I do not pretend to understand what the drug is all about, but it's a mild narcotic, a muscle relaxant, and also helps minimize the sleep disorders that Dennis exhibits. It also becomes useless after a while, and doses must be increased. It isn't covered my Medicare, but it is relatively cheap.
And I am taking it too.
My doctor prescribed it for me as an anti-anxiety drug, to be taken when I come home from work at night when needed. It does help me relax, let go of work, and focus on Dennis. It also helps me sleep better.
The last time Dennis was in the hospital, his doctor took him off of sleep medications. He felt they were a part of the problem in his infections - breathing, swallowing etc, may be inhibited by sleep drugs. Then we went to California, and for three nights I did not get a decent night's sleep. The fourth night, we both took the drug and we both slept better.
I am not endorsing any drug here. I am simply mentioning that sometimes there are answers out in this world that are simple. This little narcotic, legal narcotic, has improved our lives. There are still nights that Dennis wakes me up, but now I am able to fall back to sleep once again. And for me, that is priceless.
Until later,
Ann and Dennis
Wednesday, October 21, 2009
Sleeping
Dennis slept at the hospital two nights ago for a sleep study. The doctor never called us about the results, so I expect that all is okay with him. I slept alone in the bed, and while I slept through the night in peace, I missed my Danielito next to me.
Last night, Dennis slept most of the night on the floor. I woke to hear him grunting, trying to pull himself up from a half in and half out of bed position. We finally just pulled him the rest of the way down, when it was apparent that between the two of us, we did not have the strength to pull him back up. Then he was fatigued, and couldn't get on all fours, so I just made him a bed on the floor. I did not sleep in peace, but I still missed him sleeping with me.
Next time I complain about him waking me up (and I will), would someone kindly remind me that I do miss him when he is not around? I most likely will say something slightly sarcastic back, but I will hear you.
Until later,
Ann and Dennis
Last night, Dennis slept most of the night on the floor. I woke to hear him grunting, trying to pull himself up from a half in and half out of bed position. We finally just pulled him the rest of the way down, when it was apparent that between the two of us, we did not have the strength to pull him back up. Then he was fatigued, and couldn't get on all fours, so I just made him a bed on the floor. I did not sleep in peace, but I still missed him sleeping with me.
Next time I complain about him waking me up (and I will), would someone kindly remind me that I do miss him when he is not around? I most likely will say something slightly sarcastic back, but I will hear you.
Until later,
Ann and Dennis
Tuesday, August 11, 2009
Middle of the Night Wake-Ups
After Dennis had woken me up for the third time last night, I swore at him and moved myself to the couch. I spent the next hour trying to relax, get that Del Amitri song out of my head and back to sleep. I found a few hours of good sleep. At least when I woke at 7 am, I felt fairly rested.
The first time he woke me up was to turn him. I try hard to be patient with the turning wake- ups. He is in bed quite a few hours at a stretch, gets tired and his joints get sore. He can't turn himself without help. Most times this turn is easy, and I can get back to sleep quickly. This time it was back to dreaming in minutes.
The next time he woke me up was because his arm was numb. What am I supposed to do about an arm that is asleep?
As I am relating one little night episode with you, you need to keep a few things in mind.
One, this happens almost nightly. It happens more often after a big change. Dennis had two big changes last month - the catheter and the feeding tube.
Two, Dennis struggles with pronouncing consonants, even when he is wide awake and at his optimum strength. I have learned to understand " ur ee" (turn me) and "uh in ons" ( covingtons - Dennis' word for covers), two of his most common night time requests. When he throws a new one out, I have to really focus to figure it out. By the time I had figured out, " i ar is um", I was wide awake and frustrated.
Three, I never know when he might really need my help. He has had a few falls out of bed, infections, pneumonia, and other large and small emergencies. The problem is he is not very good about differentiating between an emergency and simply wanting attention.
Four, Dennis talks in his sleep. Loudly. This morning, according to Dennis, the third time he woke me, he was dreaming and talking to me. It seems he thought I had a laptop computer in bed and was looking for a new TV for Mother. Since we actually are looking for a new TV, and have been looking on the computer, this sounds plausible. But, his eyes were wide open, he was very insistent, and I was trying hard to understand him.
I decided to forgive him. He said he will try hard not to wake me up for every single thing on his mind. Perhaps I should give him two sleeping pills tonight.
Until later,
Ann and Dennis
The first time he woke me up was to turn him. I try hard to be patient with the turning wake- ups. He is in bed quite a few hours at a stretch, gets tired and his joints get sore. He can't turn himself without help. Most times this turn is easy, and I can get back to sleep quickly. This time it was back to dreaming in minutes.
The next time he woke me up was because his arm was numb. What am I supposed to do about an arm that is asleep?
As I am relating one little night episode with you, you need to keep a few things in mind.
One, this happens almost nightly. It happens more often after a big change. Dennis had two big changes last month - the catheter and the feeding tube.
Two, Dennis struggles with pronouncing consonants, even when he is wide awake and at his optimum strength. I have learned to understand " ur ee" (turn me) and "uh in ons" ( covingtons - Dennis' word for covers), two of his most common night time requests. When he throws a new one out, I have to really focus to figure it out. By the time I had figured out, " i ar is um", I was wide awake and frustrated.
Three, I never know when he might really need my help. He has had a few falls out of bed, infections, pneumonia, and other large and small emergencies. The problem is he is not very good about differentiating between an emergency and simply wanting attention.
Four, Dennis talks in his sleep. Loudly. This morning, according to Dennis, the third time he woke me, he was dreaming and talking to me. It seems he thought I had a laptop computer in bed and was looking for a new TV for Mother. Since we actually are looking for a new TV, and have been looking on the computer, this sounds plausible. But, his eyes were wide open, he was very insistent, and I was trying hard to understand him.
I decided to forgive him. He said he will try hard not to wake me up for every single thing on his mind. Perhaps I should give him two sleeping pills tonight.
Until later,
Ann and Dennis
Saturday, August 1, 2009
Sleep, Interrupted
It was a long day, today. Dennis wanted to get out of bed at 6 am and no matter how much I begged, there was not going to be any relenting. He had been in bed for 12 hours and he had a sore back. By the time I had gotten him up, dressed, changed and fed, I was wide awake, too. So I picked up the house and shot off a few emails regarding the sale of Mother's house.Then it was off for a hair cut for me, stitches replaced for Dennis, a stop at BlockBusters for a few Blueray disks (fancy ass DVDs) and a unplanned pizza pickup at the best pizza shop in Minneapolis.
By the time we returned home, 4 pm, Dennis was exhausted again. We managed to get in one tube feeding, one slice of pizza each and one movie, before Dennis went back to bed. Well, he had been up for 14 hours, and that is a long day for him.
I gave him two sleeping pills (it's within the prescribed amount) hoping he would sleep a little later for a Saturday morning sleep in late. These pills not only help him sleep longer, but also quieter. The muscle relaxers in the pills also keep him from slugging me in the middle of the night. They often help with his vivid dreams and wild screams. Not always, but most of the time.
All was well when I went to bed a few hours later. He was sound asleep and quiet. I drifted off into my own dream land and hoped for the best.
3 am. The usual time for sleep, interrupted, but not the usual suspect. One of those damn smoke detectors was beeping. I rolled over, trying to ignore it. Nope, that wasn't going to work. I finally got up, pulled a chair under the contraption right outside our bedroom door, and reached. Damn high ceilings, I couldn't reach. I went to the pantry, where Dennis had put a pole that I cursed every time I opened the pantry, and tried to reach it once again. Success! I had disarmed the detector!
By this time, Stinker, (Shiva, the kitty) was following me around and wanted up, on the bed. Actually, she wanted to lay on my belly and allow me to rub her face for a while. This was cool with me. I needed to unwind after my trials with the alarm. And just as I had started to forget reality, the beeping started again.
Who in the world, invented such a contraption? An alarm is suppose to give warning when it is necessary. Crying wolf is contradictory to what an alarm is meant to do.
I tried, once again to ignore it. I counted the seconds between the beeps. Knowing when the next beep is coming is easier for me than waiting for the next beep. Exactly 15 seconds between beeps. 4 beeps a minute. 240 beeps an hour. I wanted to sleep for at least 3 more hours, which meant I needed to tolerate over 700 more beeps. Shit. I couldn't do it.
I got up, again. I pulled out the fold up stool. Wisely, I put on a robe. Not only do we have high ceilings, but also too many windows for a late night naked scenario on a stool. I found the battery cover and opened it up. Damn. A 9 volt battery.
Who, in this world, keeps a stock of 9 volt batteries around? Not us, it appears.
It's times like these that I miss my old Dennis the most. Oh, I have lived alone as many years as I have lived with someone else. I know how to take care of myself. But, when you live with someone, you don't always want to take care of everything. Okay, let the self-pity go.
The upshot is, by now it is after 4 am, and here I sit. Counting the damn seconds between beeps. And, as it should be, Dennis has started making noises and talking in his sleep. The pills have worn off and my REM sleep is gone until at least tomorrow night. At least I got an entry written for today.
Until later,
Ann and Dennis
By the time we returned home, 4 pm, Dennis was exhausted again. We managed to get in one tube feeding, one slice of pizza each and one movie, before Dennis went back to bed. Well, he had been up for 14 hours, and that is a long day for him.
I gave him two sleeping pills (it's within the prescribed amount) hoping he would sleep a little later for a Saturday morning sleep in late. These pills not only help him sleep longer, but also quieter. The muscle relaxers in the pills also keep him from slugging me in the middle of the night. They often help with his vivid dreams and wild screams. Not always, but most of the time.
All was well when I went to bed a few hours later. He was sound asleep and quiet. I drifted off into my own dream land and hoped for the best.
3 am. The usual time for sleep, interrupted, but not the usual suspect. One of those damn smoke detectors was beeping. I rolled over, trying to ignore it. Nope, that wasn't going to work. I finally got up, pulled a chair under the contraption right outside our bedroom door, and reached. Damn high ceilings, I couldn't reach. I went to the pantry, where Dennis had put a pole that I cursed every time I opened the pantry, and tried to reach it once again. Success! I had disarmed the detector!
By this time, Stinker, (Shiva, the kitty) was following me around and wanted up, on the bed. Actually, she wanted to lay on my belly and allow me to rub her face for a while. This was cool with me. I needed to unwind after my trials with the alarm. And just as I had started to forget reality, the beeping started again.
Who in the world, invented such a contraption? An alarm is suppose to give warning when it is necessary. Crying wolf is contradictory to what an alarm is meant to do.
I tried, once again to ignore it. I counted the seconds between the beeps. Knowing when the next beep is coming is easier for me than waiting for the next beep. Exactly 15 seconds between beeps. 4 beeps a minute. 240 beeps an hour. I wanted to sleep for at least 3 more hours, which meant I needed to tolerate over 700 more beeps. Shit. I couldn't do it.
I got up, again. I pulled out the fold up stool. Wisely, I put on a robe. Not only do we have high ceilings, but also too many windows for a late night naked scenario on a stool. I found the battery cover and opened it up. Damn. A 9 volt battery.
Who, in this world, keeps a stock of 9 volt batteries around? Not us, it appears.
It's times like these that I miss my old Dennis the most. Oh, I have lived alone as many years as I have lived with someone else. I know how to take care of myself. But, when you live with someone, you don't always want to take care of everything. Okay, let the self-pity go.
The upshot is, by now it is after 4 am, and here I sit. Counting the damn seconds between beeps. And, as it should be, Dennis has started making noises and talking in his sleep. The pills have worn off and my REM sleep is gone until at least tomorrow night. At least I got an entry written for today.
Until later,
Ann and Dennis
Thursday, May 28, 2009
Prairie Dogs
I can't go back to sleep.
It's four am, and Dennis is chasing prairie dogs in his sleep. I don't know why those pesky prairie dogs keep nipping at his ankles, but they do. At least 3 nights a week he is fighting them off, swearing at them and they just keep biting away. It's quite a noisy dream and his legs and arms flail around in stiff and abrupt motions. It's not easy to stay asleep, or fall back to sleep when he is dreaming out loud.
One of his doctor's suggested that he take an extra sleeping pill midway through the night. In theory, it should work. In actuality, this would mean waking him up, propping him up, giving him the pill, unpropping him and readjusting him to a sleeping position. This would be a 30 minute process, and I would be so wide awake by the end, I still wouldn't be able to get back to sleep.
I tried putting my arm around him, but he is wearing his dinner from the night before, and his chest is sticky. I talked to him and let him know that I chased every last one of those critters away, but he must not have believed me, because he just kept flailing and yelping.
Finally, I got out of bed, cleaned up the kitchen and sat down to write this blog. Naturally, now that it almost time for the alarm to go off, he has quieted down. Oh, well, yesterday his PCA wasn't able to come and we slept in until almost 11:00. I can't complain about a lack of sleep.
I would, however, like to figure out why he dreams of prairie dogs. Is it just me, or is this an odd animal to have in a dream?
Until later,
Ann and Dennis
It's four am, and Dennis is chasing prairie dogs in his sleep. I don't know why those pesky prairie dogs keep nipping at his ankles, but they do. At least 3 nights a week he is fighting them off, swearing at them and they just keep biting away. It's quite a noisy dream and his legs and arms flail around in stiff and abrupt motions. It's not easy to stay asleep, or fall back to sleep when he is dreaming out loud.
One of his doctor's suggested that he take an extra sleeping pill midway through the night. In theory, it should work. In actuality, this would mean waking him up, propping him up, giving him the pill, unpropping him and readjusting him to a sleeping position. This would be a 30 minute process, and I would be so wide awake by the end, I still wouldn't be able to get back to sleep.
I tried putting my arm around him, but he is wearing his dinner from the night before, and his chest is sticky. I talked to him and let him know that I chased every last one of those critters away, but he must not have believed me, because he just kept flailing and yelping.
Finally, I got out of bed, cleaned up the kitchen and sat down to write this blog. Naturally, now that it almost time for the alarm to go off, he has quieted down. Oh, well, yesterday his PCA wasn't able to come and we slept in until almost 11:00. I can't complain about a lack of sleep.
I would, however, like to figure out why he dreams of prairie dogs. Is it just me, or is this an odd animal to have in a dream?
Until later,
Ann and Dennis
Thursday, February 19, 2009
Sleeping
There are simply a few things that a person should not talk about when they wake up in the middle of the night and find their partner awake, too.
One is money and the other is death.
Dennis takes a light narcotic sleeping aide, that keeps bad dreams and movements at bay through the night. So when he brings up money worries or decides to tell me how long he believes he has to live, he falls asleep easily after he is finished. Me, I am kept awake for the remainder of the night.
Last night, however, after he announced at 1:30 am that he thinks he has about 2 to 3 years to live, I got up and took one of his pills.
I know, I really do know, that prescribed meds should never be shared. But I also know that going to work without my eight hours is an equally bad idea. So I took one pill and slept until the alarm went off at 5:30.
I suppose I should go back and finish the conversation with Dennis at a time other that the middle of the night. I should also talk to my doctor about a proper sleeping pill for me, for times just like this.
It might also help if I brought a large hammer to bed, and smacked Dennis when he brings up inappropriate night time conversation. But that could lead to jail time, and that has to be worse than taking a prescribed drug, without a prescription.
One is money and the other is death.
Dennis takes a light narcotic sleeping aide, that keeps bad dreams and movements at bay through the night. So when he brings up money worries or decides to tell me how long he believes he has to live, he falls asleep easily after he is finished. Me, I am kept awake for the remainder of the night.
Last night, however, after he announced at 1:30 am that he thinks he has about 2 to 3 years to live, I got up and took one of his pills.
I know, I really do know, that prescribed meds should never be shared. But I also know that going to work without my eight hours is an equally bad idea. So I took one pill and slept until the alarm went off at 5:30.
I suppose I should go back and finish the conversation with Dennis at a time other that the middle of the night. I should also talk to my doctor about a proper sleeping pill for me, for times just like this.
It might also help if I brought a large hammer to bed, and smacked Dennis when he brings up inappropriate night time conversation. But that could lead to jail time, and that has to be worse than taking a prescribed drug, without a prescription.
Thursday, August 28, 2008
Life Can Be Dull
Dennis and I have both been dreaming very active dreams, lately. Nothing exciting to relate to anyone, but they are very active dreams. They are also loud, and at least for Dennis, very full of violence.
I imagine both of us are fighting back against something we don't like. Whatever the reason, I know that I would not be a happy camper if I was in the room next door. I have put on a recorder at night, and between both of us snoring and Dennis' yelping, we could wake the soundest sleeper.
Dennis has a mild narcotic he takes at night, but it only seems to last for about six hours. Unfortunately, he sleeps, loudly, much longer than six hours. I know the next time we see one of his many doctors, we will need to discuss this problem. Now that I have returned to work, I really do not want to be woken up at 2:00 in the morning.
I know this is a dull read for a daily blog. I also know there is a reason to celebrate the dullness in this blog lately. Everything is going great, at this moment. Dennis seems stabilized. There have been no real troublesome new symptoms, and nothing new has happened for some time. We have found coverage for when I am at work, and it seems that is turning out to work okay, too.
So today, I celebrate the dullness of life.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and Celebrating Dullness
I imagine both of us are fighting back against something we don't like. Whatever the reason, I know that I would not be a happy camper if I was in the room next door. I have put on a recorder at night, and between both of us snoring and Dennis' yelping, we could wake the soundest sleeper.
Dennis has a mild narcotic he takes at night, but it only seems to last for about six hours. Unfortunately, he sleeps, loudly, much longer than six hours. I know the next time we see one of his many doctors, we will need to discuss this problem. Now that I have returned to work, I really do not want to be woken up at 2:00 in the morning.
I know this is a dull read for a daily blog. I also know there is a reason to celebrate the dullness in this blog lately. Everything is going great, at this moment. Dennis seems stabilized. There have been no real troublesome new symptoms, and nothing new has happened for some time. We have found coverage for when I am at work, and it seems that is turning out to work okay, too.
So today, I celebrate the dullness of life.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and Celebrating Dullness
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