Guest guest Posted December 31, 2011 Report Share Posted December 31, 2011 Excessive sleepiness is common for those with LBD. As long as there wasn't a recent change in meds it's quite common -- if you go to our Links section you will see a lot of discussion about Excessive Sleep issues http://health.groups.yahoo.com/group/LBDcaregivers/links go into the folder marked Sleep Issues Sleep disorders associated with LBD, Bedtime comfort needs > > I posted a question earlier about my husband's excessive sleepiness. Once > attributed to UTI by doctors, the other time to constipation. Well he's now > in the next room unable to get up from yesterday late noon I'm told by my > caring but somewhat feckless carer. He's lying in his ammonia-smelling > urine, it's New Year's eve, a big thing for Russians, who moved Christmas > to New Year's eve so as not to bring religion in. > > I got 2 answers to my question. When I talk of atheism I get many answers. > > What is this list about then? > > Yes, LBD is crap. And, yes, there are many ways of exiting. All I want to > know is: has anyone witnessed what I have and what might it signify: > dehydration, UTI, what? My concerns are purely practical. I don't know how > many people are involved in this list, but if only 2 can answer me with not > a close enough match, maybe we need more members. Praying is great, but in > my mind it doesn't readily solve practical problems. As in that joke, I'm > helping you but you need to get off your butt. > > Olga > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2011 Report Share Posted December 31, 2011 Olga, I am not a physician but have dealt with my wife's chronic UTI's for years.  In her case she sleeps very little and is up talking 20-23 hours/day in the presence of the infection. She also has a cognitive drop, blunted sensorium, is delusional and has decreased motor acuity. After about 18 hours on an antibiotic she becomes a new person. Keep in mind the highly variable presentation that Lewy makes and no two patients will respond the same.  Have you used any of the OTC UTI test strips to test his urine for indications something untoward may be at work??  That might provide some insight. How do you define excessive sleepiness?  Is the onset sudden?  EDS is very common with Lewy. How closely do you monitor fluid intake and how does it compare to prior weeks or days? A fluid intake log can provide a quick reference if he has a recent reduced intake. Does his skin tent or is the mucosa on the inside of his mouth very dry?  Those are the questions her doc will ask me. That might provide some helpful insight when you talk to his healthcare professional to suggest dehydration. My wife is incontinent, but by making sure she has the opportunity to sit on the bidet every 2 hours she will remain dry through out the day until the evening hours  when she sleeps. I make these suggestions on the basis of my personal experience and observations.  Obviously, yours may vary. You are preaching to the choir about getting off one's butt. As a care giver for longer than I care to imagine, I would relish some " butt time. " Good luck and Happy New Year.  Jeff ________________________________ To: LBDcaregivers Sent: Saturday, December 31, 2011 5:15 PM Subject: LBD and atheism  I posted a question earlier about my husband's excessive sleepiness. Once attributed to UTI by doctors, the other time to constipation. Well he's now in the next room unable to get up from yesterday late noon I'm told by my caring but somewhat feckless carer. He's lying in his ammonia-smelling urine, it's New Year's eve, a big thing for Russians, who moved Christmas to New Year's eve so as not to bring religion in. I got 2 answers to my question. When I talk of atheism I get many answers. What is this list about then? Yes, LBD is crap. And, yes, there are many ways of exiting. All I want to know is: has anyone witnessed what I have and what might it signify: dehydration, UTI, what? My concerns are purely practical. I don't know how many people are involved in this list, but if only 2 can answer me with not a close enough match, maybe we need more members. Praying is great, but in my mind it doesn't readily solve practical problems. As in that joke, I'm helping you but you need to get off your butt. Olga Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2011 Report Share Posted December 31, 2011 Hello everyone, I've been reading all the posts and realize that for me, and seemingly others, there is a great deal of grief in experiencing the process of this disease. I realize that grief has stages, and I have experienced, and do experience them all. Sent from my iPhone > I posted a question earlier about my husband's excessive sleepiness. Once > attributed to UTI by doctors, the other time to constipation. Well he's now > in the next room unable to get up from yesterday late noon I'm told by my > caring but somewhat feckless carer. He's lying in his ammonia-smelling > urine, it's New Year's eve, a big thing for Russians, who moved Christmas > to New Year's eve so as not to bring religion in. > > I got 2 answers to my question. When I talk of atheism I get many answers. > > What is this list about then? > > Yes, LBD is crap. And, yes, there are many ways of exiting. All I want to > know is: has anyone witnessed what I have and what might it signify: > dehydration, UTI, what? My concerns are purely practical. I don't know how > many people are involved in this list, but if only 2 can answer me with not > a close enough match, maybe we need more members. Praying is great, but in > my mind it doesn't readily solve practical problems. As in that joke, I'm > helping you but you need to get off your butt. > > Olga > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2011 Report Share Posted December 31, 2011 Sorry, that got sent prematurely! In any event, first there were years of denial. " anyone could forget, might get confused " , etc. At this time my husband was still working, playing bridge, etc. And there was anger: lots of anger at what he couldn't do, how slow he seemed, his posture, etc. No dx other than cognitive decline. I bargained. " just let him have some decent years til 75....(that sure didn't help......) then depression. By now it was 2011 and all this started in 2004 after had heart surgery. I had just finished radiation after chemo following breast cancer. I was mostly done with my tx and suddenly became very depressed. Enter Prozac. Thank goodness I had been on it a month when fell and experienced a frightening and dramatic decline. Out of the house for 2 1/2 months, returning home practically bedridden. Maybe it was ar this point that acceptance started. I realized he was very I'll and finally got the LBD this past June 3 at UCSF. So, I am doing all I can within the context of " what is " . I am more patient and caring because I have given up denying and resenting. At this time has declined in both his renal function and red blood (CBC panel)and he is having many tests. On Thursday we see the hematologist. Sooo, long story short, I believe we are all in one stage or another of grief. And why wouldn't we be. My condolences to those of you who have lost your loved ones. But their suffering was awful, as was/is yours. May you all find peace and fulfillment in your new phase of life. I always sat gratitudes before I go to bed. There is always something to be grateful for. When I can't think of much, I try harder.. Anyway, I am grateful for the forum and so glad to have met you, Helen, Janet and Teri!! Look forward to more contact! Wilf Sent from my iPho > I posted a question earlier about my husband's excessive sleepiness. Once > attributed to UTI by doctors, the other time to constipation. Well he's now > in the next room unable to get up from yesterday late noon I'm told by my > caring but somewhat feckless carer. He's lying in his ammonia-smelling > urine, it's New Year's eve, a big thing for Russians, who moved Christmas > to New Year's eve so as not to bring religion in. > > I got 2 answers to my question. When I talk of atheism I get many answers. > > What is this list about then? > > Yes, LBD is crap. And, yes, there are many ways of exiting. All I want to > know is: has anyone witnessed what I have and what might it signify: > dehydration, UTI, what? My concerns are purely practical. I don't know how > many people are involved in this list, but if only 2 can answer me with not > a close enough match, maybe we need more members. Praying is great, but in > my mind it doesn't readily solve practical problems. As in that joke, I'm > helping you but you need to get off your butt. > > Olga > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2012 Report Share Posted January 1, 2012 Hi Olga, All LBD patients react differently, but sleepiness is a common symptom with LBD. Sleeping from noon the day before into the next day is not unheard of. If he has been put on any new medications, it could be a reaction to the medication or it could be just normal LBD doing its thing. The things you also mention can cause sleepiness; it could be any number of things. sent you where to find the links on LBD sleepiness, check it out. Your husband may sleep endless hours and then suddenly be awake and not as sleepy. It can fluctuate. You never know day to day, hour to hour what they will be doing. My question: Why on earth is your feckless carer allowing your husband to lie in his ammonia-smelling urine?! I would be more concerned about that and why do you continue to have a feckless carer? If your husband doesn't have a UTI lying in it for so many hours, it certainly can cause one and they are fatal if they turn to Sepsis. Does your husband wear a diaper and if not, he should, so the carer can change him. I believe this list is here to help support LBD in everyway, whether it be in prayer or advice. It's your choice to take it or leave it. No one is forcing you to take the advice or prayer. If it's helpful, it's helful, Period. There is all kinds of help in the LBD links and files that is given to new members. It is helpful in many areas. You may find something to help you there if you don't find it in this group. Being Sarcastic is not going to help you. I hear animosity in your words. Take care and be strong, Jan I posted a question earlier about my husband's excessive sleepiness. Once attributed to UTI by doctors, the other time to constipation. Well he's now in the next room unable to get up from yesterday late noon I'm told by my caring but somewhat feckless carer. He's lying in his ammonia-smelling urine, it's New Year's eve, a big thing for Russians, who moved Christmas to New Year's eve so as not to bring religion in. I got 2 answers to my question. When I talk of atheism I get many answers. What is this list about then? Yes, LBD is crap. And, yes, there are many ways of exiting. All I want to know is: has anyone witnessed what I have and what might it signify: dehydration, UTI, what? My concerns are purely practical. I don't know how many people are involved in this list, but if only 2 can answer me with not a close enough match, maybe we need more members. Praying is great, but in my mind it doesn't readily solve practical problems. As in that joke, I'm helping you but you need to get off your butt. Olga Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2012 Report Share Posted January 1, 2012 Dear Olga I am sorry your did not feel that your questions on excessive sleepiness were not answered by many people. Please do not take reactions like this personally. As you will know, things get pretty unpredictable when you are caring for someone with LBD and it isn't always easy to find the time to respond ... and holiday times such as Christmas/NewYear/Thanksgiving make further claims on our limited free time. Have you discovered the LBDA website www.lbda.org ? I found it very helpful to explore their discussion forums because you can find a particular topic and follow a strand of emails on this topic. You don't have to be a 'member' to read the entries in the forum. Just follow the link on their Homepage to " Community " then to " Join LBDA's Discussion Forum " . There is a wealth of information here. You will find information about 'sleepiness' under the general heading of " Symptoms and Diagnosis " . If you do become a member, you are able to contribute to the discussions. I found that my Jim slept a great deal and it wasn't always easy to pinpoint the cause - sometimes it was depression, sometimes the side effects of low blood pressure or sometimes I think he just wanted to withdraw from the world. When I tried to put myself in his shoes, I think it can be pretty scary when you don't know what is happening to your mind and body with this disease. I think sleep was Jim's way of 'coping' and not having to worry about what was happening to him. At least when he was asleep I felt he was safe and I was able to get on with all the other things I had to do. I do hope you are able to get more help in ensuring that your husband isn't sitting in wet underclothes ... as your reference to " lying in his ammonia-smelling urine " seems to indicate. I found that dampness can aggravate skin conditions similar to nappy rash, and you sound as though life is difficult enough without having to add this to your situation. This group is full of compassionate people from all walks of life and all beliefs and backgrounds. I'm glad you have found the group. Elaine from Sydney Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2012 Report Share Posted January 1, 2012 Dear Olga: I did not see any question about excessive sleepiness. My husband sleeps a lot during the day and night. He still can do most daily living skills with some to minor help. I try to open the drapes in the living room before I leave for work to let in the sunshine! (That is sometimes hard to find in the winter and in OH! LOL) Since it gets dark at 5pm, that has thrown him off in him keeping track of time. I also try to open the blinds in the bedroom, again when I leave for work. He seems to sleep more now that it is winter and cold weather. He does seem to go outside more in the warmer weather. He does not sleep through the night, he is up several times to go to the bathroom. His only change in med was to increase his sinemet to help with movement. Vivian - On Sun, Jan 1, 2012 at 6:03 PM, Elaine Elliott wrote: > ** > > > Dear Olga > > I am sorry your did not feel that your questions on excessive sleepiness > were not answered by many people. Please do not take reactions like this > personally. As you will know, things get pretty unpredictable when you are > caring for someone with LBD and it isn't always easy to find the time to > respond ... and holiday times such as Christmas/NewYear/Thanksgiving make > further claims on our limited free time. > > Have you discovered the LBDA website www.lbda.org ? > > I found it very helpful to explore their discussion forums because you can > find a particular topic and follow a strand of emails on this topic. You > don't have to be a 'member' to read the entries in the forum. Just follow > the link on their Homepage to " Community " then to " Join LBDA's Discussion > Forum " . There is a wealth of information here. You will find information > about 'sleepiness' under the general heading of " Symptoms and Diagnosis " . > If > you do become a member, you are able to contribute to the discussions. > > I found that my Jim slept a great deal and it wasn't always easy to > pinpoint > the cause - sometimes it was depression, sometimes the side effects of low > blood pressure or sometimes I think he just wanted to withdraw from the > world. When I tried to put myself in his shoes, I think it can be pretty > scary when you don't know what is happening to your mind and body with this > disease. I think sleep was Jim's way of 'coping' and not having to worry > about what was happening to him. > > At least when he was asleep I felt he was safe and I was able to get on > with > all the other things I had to do. > > I do hope you are able to get more help in ensuring that your husband isn't > sitting in wet underclothes ... as your reference to " lying in his > ammonia-smelling urine " seems to indicate. I found that dampness can > aggravate skin conditions similar to nappy rash, and you sound as though > life is difficult enough without having to add this to your situation. > > This group is full of compassionate people from all walks of life and all > beliefs and backgrounds. I'm glad you have found the group. > > Elaine from Sydney Australia > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2012 Report Share Posted January 1, 2012 Hi, Olga. My mom was having one of those excessively sleepy days today, too. We couldn't rouse her for meals or even to drink much. The only thing that managed to waken her was her 10 month old great grandson. And that lasted only two minutes. My experience with this type of day is that it can actually last for a couple of days. Today, I think, isn't the result of an infection so much as it is a reaction to the excitement and stress of the past week. I know that at least once a month, we swing the other way and she'll be sharp as a tack. That's LBD. No way to predict what any day will be like. I'd like to say you get used to it, but it can still take me by surprise. I'm concerned about your mention of your husband lying in his own urine. If his carer is a hired caregiver, it doesn't sound like he is doing his job well. If the carer is family, maybe he is overwhelmed and needs additional help. You have every right to point out the problem and insist on better care. Sometimes only one or two people will respond, probably because only those few feel they can help with the concern raised. Sometimes,too,the issue raised touches a spot in some that makes it difficult to respond with help. That doesn't imply a lack of caring. Those who cannot respond may be looking for the same answers you are. Be patient with us. We are all in the same turmoil - tilting at windmills that keep moving around. All we can do is care for each other and our loved ones as best we are can and take it one day at a time. Kathy Kate Knapp > ** > > > I posted a question earlier about my husband's excessive sleepiness. Once > attributed to UTI by doctors, the other time to constipation. Well he's now > in the next room unable to get up from yesterday late noon I'm told by my > caring but somewhat feckless carer. He's lying in his ammonia-smelling > urine, it's New Year's eve, a big thing for Russians, who moved Christmas > to New Year's eve so as not to bring religion in. > > I got 2 answers to my question. When I talk of atheism I get many answers. > > What is this list about then? > > Yes, LBD is crap. And, yes, there are many ways of exiting. All I want to > know is: has anyone witnessed what I have and what might it signify: > dehydration, UTI, what? My concerns are purely practical. I don't know how > many people are involved in this list, but if only 2 can answer me with not > a close enough match, maybe we need more members. Praying is great, but in > my mind it doesn't readily solve practical problems. As in that joke, I'm > helping you but you need to get off your butt. > > Olga > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2012 Report Share Posted January 2, 2012 My husband had sleep cycles. He would sleep most of the time for a couple of days, waking in the late afternoon for a meal, then going back to sleep and then waking for a couple of hours in the evening. Then he would have a couple of days when he would be up early and want breakfast and be quite active--even if he went back to bed after eating, he wouldn't sleep. I learned not to worry about it and to go with the flow on any given day. Actually, days when he slept all day were nice because I would go shopping or to a movie, knowing that he would be out for the day. Cassie To: LBDcaregivers From: knapp@... Date: Sun, 1 Jan 2012 23:02:39 -0600 Subject: Re: LBD and atheism Hi, Olga. My mom was having one of those excessively sleepy days today, too. We couldn't rouse her for meals or even to drink much. The only thing that managed to waken her was her 10 month old great grandson. And that lasted only two minutes. My experience with this type of day is that it can actually last for a couple of days. Today, I think, isn't the result of an infection so much as it is a reaction to the excitement and stress of the past week. I know that at least once a month, we swing the other way and she'll be sharp as a tack. That's LBD. No way to predict what any day will be like. I'd like to say you get used to it, but it can still take me by surprise. I'm concerned about your mention of your husband lying in his own urine. If his carer is a hired caregiver, it doesn't sound like he is doing his job well. If the carer is family, maybe he is overwhelmed and needs additional help. You have every right to point out the problem and insist on better care. Sometimes only one or two people will respond, probably because only those few feel they can help with the concern raised. Sometimes,too,the issue raised touches a spot in some that makes it difficult to respond with help. That doesn't imply a lack of caring. Those who cannot respond may be looking for the same answers you are. Be patient with us. We are all in the same turmoil - tilting at windmills that keep moving around. All we can do is care for each other and our loved ones as best we are can and take it one day at a time. Kathy Kate Knapp > ** > > > I posted a question earlier about my husband's excessive sleepiness. Once > attributed to UTI by doctors, the other time to constipation. Well he's now > in the next room unable to get up from yesterday late noon I'm told by my > caring but somewhat feckless carer. He's lying in his ammonia-smelling > urine, it's New Year's eve, a big thing for Russians, who moved Christmas > to New Year's eve so as not to bring religion in. > > I got 2 answers to my question. When I talk of atheism I get many answers. > > What is this list about then? > > Yes, LBD is crap. And, yes, there are many ways of exiting. All I want to > know is: has anyone witnessed what I have and what might it signify: > dehydration, UTI, what? My concerns are purely practical. I don't know how > many people are involved in this list, but if only 2 can answer me with not > a close enough match, maybe we need more members. Praying is great, but in > my mind it doesn't readily solve practical problems. As in that joke, I'm > helping you but you need to get off your butt. > > Olga > > Quote Link to comment Share on other sites More sharing options...
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