Off the topic of travel for a moment.
Pressure sores. They used to be called bed sores, but obviously times have once again called for a new label that is more acceptable. This one actually makes sense to me. Tissue is damaged from too much pressure on one particular area of the body. While this may happen from being in one position in bed, it may also happen because a person is wheel chair bound.
Dennis is beginning to develop pressure sores. What do I do? I call the doctor, I look up information on the Internet, I check out the Mayo clinic site and blah, blah, blah. What do I get?
A bunch of contradictory information.
Keep it dry. Keep it moist. Bandage it. Don't bandage it. Move the patient every 15 minutes (yet another toil on my sleep). Again, blah, blah, blah.
It seems to me that bed sores have been around as long as man has existed. How can it be that there is not a real treatment for such an every day occurrence? Have we, as a medical field and a society, just ignored the pain a patient must be in once bound to a bed or a chair? Why hasn't anyone warned me about this before it became a problem?
Okay, I am frustrated. I am sick myself, and since it is a holiday, I have no help. My sister and brother in law are not here because of bad weather (3 inches of snow) in London and some paper work that the US requires for visitors (Ralph is still considered a visitor). I invited Hamed and Ashley over for Christmas Day, and I feel like shit. So perhaps this is not the best time for me to write about such a common ailment.
Maybe I should just make myself a hot brandy (I actually do have brandy in the house for my "famous" Christmas coffee) and try to go back to sleep.
And, no, there will not be a picture today!
Until later,
Ann and Dennis
Showing posts with label sleep. Show all posts
Showing posts with label sleep. Show all posts
Saturday, December 25, 2010
Sunday, August 30, 2009
Multiple System Atrophy Stinks
" Ur ee." " Ur ee." " Ur ee, ur ee, ur ee." I am trying to pretend that I do not hear Dennis, once again, wake me at 3 am to turn him over.
" Ur ee, ur ee, ur ee, ur ee!"
I feel bad for him, but I cannot tell you how much I hate being woken up in the middle of the night. I roll over and then I feel guilty because I am able to roll over. So I get out of bed and roll him over from his left side to his right side. This time I am able to go back to sleep with ease.
A while back, I received an email from Angi, whose mother has MSA. She had recently moved her mother into assisted living because she could no longer care for herself. But, her mother was getting into trouble because she called for help so often.
I understand both sides. Dennis does need help with quite a few movements that most of us take for granted. On the other hand, I do tire of hearing, " Aaaaaaaaaannnnn," 30 times a day.
I suppose all diseases are unfair.
I hate what Alzheimer's is doing to my mother. She gets argumentative and frustrated. She feels that people she meets think she is stupid. She can't remember how to change stations on the TV using a remote. This is unfair to a woman who is extremely bright and articulate.
Even so, Dennis's disease seems particularly unfair. In four short years, he has gone from playing tennis weekly to not being able to walk without a walker and a personal aid. Four years ago, we would share nightly stories and now his speech has been reduced to vowels and some hard consonants.
I could go on, but why? I think I will close for now and celebrate all that we still have, together.
Until later,
Ann and Dennis
" Ur ee, ur ee, ur ee, ur ee!"
I feel bad for him, but I cannot tell you how much I hate being woken up in the middle of the night. I roll over and then I feel guilty because I am able to roll over. So I get out of bed and roll him over from his left side to his right side. This time I am able to go back to sleep with ease.
A while back, I received an email from Angi, whose mother has MSA. She had recently moved her mother into assisted living because she could no longer care for herself. But, her mother was getting into trouble because she called for help so often.
I understand both sides. Dennis does need help with quite a few movements that most of us take for granted. On the other hand, I do tire of hearing, " Aaaaaaaaaannnnn," 30 times a day.
I suppose all diseases are unfair.
I hate what Alzheimer's is doing to my mother. She gets argumentative and frustrated. She feels that people she meets think she is stupid. She can't remember how to change stations on the TV using a remote. This is unfair to a woman who is extremely bright and articulate.
Even so, Dennis's disease seems particularly unfair. In four short years, he has gone from playing tennis weekly to not being able to walk without a walker and a personal aid. Four years ago, we would share nightly stories and now his speech has been reduced to vowels and some hard consonants.
I could go on, but why? I think I will close for now and celebrate all that we still have, together.
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
Tuesday, May 19, 2009
Night Time Sleep
I take for granted, night after night, that I can roll over, move around, and adjust my pillows at any time I want or need. I prefer not to wake up and feel the desire to move about, but when I do, I know that I am able to fulfill my middle of the night needs easily.
Dennis is not able to adjust himself, or his pillows, or his covers any longer. He is also not all that understandable in the middle of the night. So we have developed a code, of sorts, for what he needs. These code words, or sounds, keep both of us from wanting to kill each other in the middle of the night.
"Turn me." Or, "R E." takes me about three or four tries to comprehend. It takes more time than necessary in part because I am often pretending not to hear him, and in part because I am a sound sleeper. When I have figured out that he needs to turn, we then need to communicate which way he wants to move. Is his right or left hip bothering him? Towards the window or towards the bathroom?
Each move has it's own specific problems. There are the placement of the pads beneath him, which are an incredible help in moving him. Are they far enough to the right or left to pull or push? Will they still be underneath him after the move? And, if he wants to move towards the window, will there be enough room left over for me to lay in bed? Or towards the bathroom, is there enough bed left to keep him from falling out of bed?
Then the pillows become yet another issue. Each move requires the lifting of his head and neck and tucking of the pillows underneath him. Finally the covers. Covingtons we affectionately call the whole business. No covingtons, more covingtons, or "ah ing tn, please."
I really take for granted the ability to be completely comfortable all on my own. For Dennis, he needs help and lots of help. Sometimes I begrudgingly give him the help he needs, other times, I am more understanding. And then there are the nights that I just pretend that he has not woken me up from a deep sleep.
Until later,
Ann and Dennis
Dennis is not able to adjust himself, or his pillows, or his covers any longer. He is also not all that understandable in the middle of the night. So we have developed a code, of sorts, for what he needs. These code words, or sounds, keep both of us from wanting to kill each other in the middle of the night.
"Turn me." Or, "R E." takes me about three or four tries to comprehend. It takes more time than necessary in part because I am often pretending not to hear him, and in part because I am a sound sleeper. When I have figured out that he needs to turn, we then need to communicate which way he wants to move. Is his right or left hip bothering him? Towards the window or towards the bathroom?
Each move has it's own specific problems. There are the placement of the pads beneath him, which are an incredible help in moving him. Are they far enough to the right or left to pull or push? Will they still be underneath him after the move? And, if he wants to move towards the window, will there be enough room left over for me to lay in bed? Or towards the bathroom, is there enough bed left to keep him from falling out of bed?
Then the pillows become yet another issue. Each move requires the lifting of his head and neck and tucking of the pillows underneath him. Finally the covers. Covingtons we affectionately call the whole business. No covingtons, more covingtons, or "ah ing tn, please."
I really take for granted the ability to be completely comfortable all on my own. For Dennis, he needs help and lots of help. Sometimes I begrudgingly give him the help he needs, other times, I am more understanding. And then there are the nights that I just pretend that he has not woken me up from a deep sleep.
Until later,
Ann and Dennis
Friday, August 22, 2008
Frustration Today
I am not a happy girl, today. Dennis has not been sleeping well lately, and I guess that means I don't sleep well either. This morning, at 4:00, he was awake when I got up to use the bathroom. He announced, when I returned to bed, that he was not going to the Struther's Clinic today for group. This was not news a girl who likes her full eight hours of sleep wants to hear three hours before she wants to wake up.
We had a talk a few hours later, after I watched a silly On-Demand TV movie and had my earlier than usual cup of coffee. He has this feeling that I fall asleep on a dime. What he doesn't understand is that only works as long as I am mindless. When my mind is all full of new and unwanted information, I am awake for ever. Handing me the news that my plans have been suddenly changed because of his whim of the moment, does not bring back my sleep.
I am tired. Perhaps I will catch up tonight on my sleep. Perhaps, one day, we will figure each other out.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and too little sleep
We had a talk a few hours later, after I watched a silly On-Demand TV movie and had my earlier than usual cup of coffee. He has this feeling that I fall asleep on a dime. What he doesn't understand is that only works as long as I am mindless. When my mind is all full of new and unwanted information, I am awake for ever. Handing me the news that my plans have been suddenly changed because of his whim of the moment, does not bring back my sleep.
I am tired. Perhaps I will catch up tonight on my sleep. Perhaps, one day, we will figure each other out.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and too little sleep
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