good morning everyone , my question is has anyone else experinced your LO sleeping all day also at night? This is a very new phase. and I'm not sure it is boredom or medicine or just another stage of AD. I ask him if he's feeling ok and his standard answer to this and to the doctors is (with my hands) no help there. going to see his Dr. this morning . I hope he can me insight to what is going on. But if any of you have any ideas please let me know. I just loveall the help. Wish you and I didn"t need it thou. thanks hope everyone a calm day!
I have been dealing with that for some time. I spoke to the doctors, and they tell me to wake him.... right.... I can't get him up, I can't get him to eat, and he won't take off his pJ's unless we have to go somewhere. Bathing is once a week and so is shaving. He tells me he hasn't done anything that would require a shower. how about just being alive, that requires a shower. The Alz org said it is not part of the disease, however, we are currently in a research project involving Mt Sinai Medical Center and the VA, and the Technician there told me that many caretakers say the same thing, that thier LO sleeps all the time. I don't know. One doctor told me it's normal for much later ALZ but not at this stage, but it seems that it's normal for him. I wanted to get him into a day care just for stimulation, but he won't go. So there you are, If you've seen one Alzheimer patient, you've seen one Alzheimer patient.
My DH slept all the time, no shower but he did get dressed every morning putting on his same dirty clothes. There was nothing for him to get up for. I used to tell him sit up and look like you are among the living but when I would leave the room he was back lying down again. He never missed a meal in fact that was his one main focus. Before the meal he was eating was finished he was asking about the next one. Shaving was every couple of days but would miss half of his face. I did get him to go to a senior center but it took 2 years of convincing and I promised that I would go along the first couple of days. I introduced DH to the other seniors and told them that he didn't want to be there with all those old people. They inquired about his age and did find that he was the baby of the center because he was only 75. They had a hot meal everyday for $1.25 and the bus ride home was 50 cents. He liked to play pool and exercise to the girl on the video. All that had to end when he became more combative and was placed in a NH.
My husband is stage 6-7 and sleeps most of the day in a recliner in his ALF. He even sleeps through being shaved. He is awake and raring to go for all meals. That is the only activity he is indepent in. There is lots of good activity all around him. I watch his medications and we have reduced them.
Sleeping more than usual is actually common with AD and is related to the area of the brain that is being affected. You can see it at any stage and usually indicated frontal lobe involvement. Do remember that especially in the early stages depression is commonly associated with AD and if it has not been evaluated, ask the Dr about possible depression. My husband had such terrible apathy and was sleeping 12-14 hours per day until he was placed on aricept. He is just early stage 4. His neurologist stated that the apathy was a common presentation.
thanks everyone we saw the doctor today and he gave him some medicine called Provigil it's for people who have their days and nights mixed up. But he also found he has Bronchitis so that could be a factor. Mylo just got out of the hospital 2 weeks ago with bronical flu. so it looks like we are in for another round.did I mention he has COPD as well AD. thanks again you guys are great
I would think all AD patients would be depressed unless they are at maybe stage 7 when they wouldn't know to be depressed. My DH is on an antidepressant and xanax.
My husband is on Zoloft, because I noticed the depression. Crying inappropriately, or for no reason, etc. I'm happy to see that several of you have dealt with the sleeping issue though, kind of makes me feel not so alone in this struggle. I know if you've seen one alz patient, you've seen one alz patient, but it's comforting to know that some of the symptoms are shared. thanks.
Actually, the more we talk the less I believe in the "you've seen one Alzheimer's patient, etc." I think there is a range of behavior. I think because this is more than one disease, because dementia is actually a symptom, not a disease itself, it tends to look like the patients are all different. But I don't think it is really true.
As far as I can tell they all go through at least one bout of depression. Sometimes it is worse; sometimes not so bad. They all have changes in behavior that starts at nasty speech and ends at physical violence. And at various times they can stabilize at any part of that range. They all have broken rational buttons. And they all use compulsive behaviors as strategies.
At some point in the disease they will begin to cling because the caregiver becomes the safety net. They will need to know where you are at all times. If you leave them with someone else for a short period of time they have a really hard time with that. (So far I'm not dealing with leaving him with someone, but I know that will come.) At its worse that becomes Shadowing. But even earlier there is some of that.
And absolutely none of what I've just mentioned gets put into any reading materials I've come across. I learned all of that HERE.
He sleeps great at night. Doesn't get dressed until about 11:30 a.m. or so. Eats a good breakfast and lunch. Naps 2-3 nours in the afternoon. and sometimes during the evening. He says he's just worn out and very tired but the dr can find nothing physically wrong with him. He's 82 years old and is probably in the top of stage 5. A very dear man. No rages at this time. Hopefully......
You see some of those similarities by reading here because some symptoms drive the caregiver wild, and driven-wild caregivers turn to discussion forums for help.
Actually, for example, only one-third of AD patients ever develop serious behavioral problems such as anger/aggression.
Like Mawzy's husband, mine is still a sweetheart. He's a solid 5, traces of 6. My next-door neighbor's mother died of AD, and was sweet and loving to the end.
Sunshyne, although I did experience one really bad attack, most of what my husband does on the violence spectrum is simple grumpyness and mean-spiritedness. I'm sure that if that is the end of the spectrum that the caregiver is experiencing they don't report it. But I would be shocked if it wasn't there. If you know about rages you feel that it is wrong to complain about what feels mostly like a lack of politeness by comparison. It doesn't mean that the caregiver isn't suffering. It just means that it isn't a black eye or physical bruises. The idea of ranges means that it is not just SERIOUS behavioral problems that ought to be recognized.
Right now my husband who is also a solid 5, traces of 6, is a sweetheart. There is the occasional remark that I think of as nasty, but which he might not even realize is not nice at this point. It has become a regular part of our life like when I say good morning and he answers good afternoon. That used to mean that I had slept away the day, but really 6:30 or even 7:00 isn't all that late to be getting up.
He did have what I now realize was a period of depression last November. It was never all that bad. He is certainly not depressed now.
I guess what I am saying is that I think there are ranges of behavior. But I think those ranges are there even when they are basically mild. One of the reasons for your 1/3 statistic is that they are not counting mild or moderate symptoms. But I think they should be.
Mild or moderate though wouldn't mean physical violence. I think that's the only spot I disagree with you, Starling. I agree that we see all these different phases - depression, sweetheart, rage, clinging (mine hasn't shown that yet, well into Stage 6)..
But they seem to happen in different people at different stages. The progression is different. In spite of all the physical supervision and help with ADL is concerned, can talk rationally, usually sensibly. Today I gave him some facts about giraffes while we were putting on his compression stocking. (One of the makers of these stockings uses a giraffe as its mascot, bec. of the way giraffe's leg muscles and skin are tight to compress the blood flow there; I spew out a lot of giraffe facts at the zoo). I did this purposely to see if he'd remember them in a few days, we have a neuro appointment this week.
Since my husband and I have been enrolled in the longitudinal study for three years, were in the clinical trial for two years, and I've participated in a number of smaller studies as well, I believe I can comment with some degree of authority on whether mild or moderate symptoms would be reported.
Absolutely.
But they would not be counted as serious behavioral symptoms such as verbal abuse, unreasonable temper tantrums, threats, physical violence, etc.
These statistics don't come from random complaints, they come from carefully crafted studies that are conducted at research centers throughout the country, and that have followed many thousands of patients for many, many years. The AD patient is not allowed to enroll unless s/he has a study partner, someone who spends the bulk of the time with the AD patient and is very familiar with the ADLO's behavior.
The caregiver isn't "complaining", the caregiver is reporting, as clearly and thoroughly and objectively as possible, the behaviors of the ADLO.
While the AD patient is undergoing a very thorough neuropsych evaluation, the caregiver is undergoing a very extensive interview. The caregiver spends hours with the test team, discussing behavior in the past week, the past month, the past year. Some of it is guided conversation, talking about observations and impressions and giving examples, some of it is ranking a very lengthy list of symptoms or adjectives in terms of frequency and intensity. They give us forms to complete before the sessions ever start, and then they'll also talk us through a similar set of forms that they record. And they'll use a variety of adjectives (grumpy, irritable, angry, sulky, furious, etc etc) to see if different words evoke different reactions in the caregivers. Sometimes they even repeat the same adjectives from time to time, just to see if you'll respond differently after you've had a chance to think more. And they mix words that are designed to get at, say, anger with those meant to get at other types of behaviors. This is so that the caregiver has to give fresh thought to the adjective each time -- you don't remember what you said about "grumpy" by the time they ask about "sulky" or "irritable".
And I would also note that a normal person is going to have his/her own "normal" range of anger -- or depression, or whatever. The study is designed to track the fluctuations of each individual patient, to identify clear (even if subtle) changes that are attributable to the AD, not just to the personality of the patient. They also compare the caregiver's observations to the results of the patient's neuropsych evaluation.
When I say my husband is a sweetheart, I mean he's been a sweetheart the entire time. He isn't grumpy or mean-spirited, he never insults or argues. I can say in all honesty that we haven't had a single argument since he was diagnosed three-plus years ago. Before that, I got upset a few times over something he did, and he was distraught that I was unhappy, and would have done anything to make it up to me even though he didn't have a clue why I was upset in the first place. He never objected to being told he couldn't drive any more. I clearly hurt his feelings when I had to take away his debit card, but he didn't argue or try to make me feel bad about it. I can haul him out of bed at 3:00 in the morning because I'm restless and want to get going on something, and he's perfectly agreeable. He is extremely patient. He constantly tells me he loves me, compliments me, demonstrates affection. He'll do anything I ask him to do.
The only significant change in his personality that I've seen is that he does not show a lot of initiative any more -- in the past, he'd have kept himself busy looking for all sorts of chores to do, but now he initiates only a select few on his own. He'll do any chore I ask him to, very willingly ... he just doesn't come up with the idea of doing it himself any more.
Well I can agree that grumpyness doesn't count as rage or physical violence. And it looks like Sunshyne's husband isn't even on the grumpy to violent range at all. Oh well, back to the drawing board.
Dick was horrible when he was on pain killers.... I tell you I was crying all the time. He didn't think we lived here, and he was so nasty to me. Finally I said to myself, He doesn't need the pain killers that much, I'll give him Tylonol. after a few days, when the vicodan was out of his system, he turned back to the sweetie he's always been, but I could easily see the deterioration that had taken place in the meantime. The fact that that happened while on pain killers makes me think that as he gets worse, his personality might change for the worse, and he might become what he was on the vicodan. That is very scary. right now, he's always pretty pleasant, although he does get very lonesome if I'm out (and sometimes I have to be, just for my own sanity) Then he goes to sleep when I get home, because I guess, he feels more secure. It's just such a weird disease. It's like I've got an 85 year old toddler.What happens when the terrible twos set in. (grin)
Y'all can rest assured I count my blessings EVERY time I come here. And I count 'em every day that goes by with my husband still being sweet and affectionate. I know how bad AD can get, because my mother developed every nasty symptom that exists. I wish there were something I could do to make it easier for the rest of you...
chris r, the vicodin could have been doing that to your husband. Opiates can increase confusion in AD patients, and cause mood changes. Without the drug, your husband might never have exhibited that behavior. (By the way, have you given up on getting your icon to show? Nikki reduced your picture for you...)
chris A r.....After eliminating the vicadon from DH meds he has been more verbal with his talk. No nasty stuff, just more complete sentences. Some other things haven't changed but some did and I am not sure it was the meds or just the AD and VD?????
Meds can be wonderful or Meds can be deadly.....Fine line sometime and I think it is up to us to do adjustments. I couldn't tell a difference in DR as far as pain relief went, between the tylenol, Ibo or vicadon. He couldn't tell me. Anyway, no more vicadon for now. GP didn't want him taking it anyway, said it tended to cause more confusion. The pain clinic prescribed it.
I don't know much about pain meds but my DH is taking 5 mg of Hydrocodone twice a day and it really helps with his pain. I know it's a narcotic but is it the same thing as vicadon? stronger..weaker. Is it more likely to cause confusion or less likely than vicadon?
Dazed - I really don't know about the difference but they both are narcotic I think and our GP didn't like for DH to take a narcotic. Has his confusion or symptoms been worse since he started the Hydrocodone? If not, he must accept it fine. I just checked DH bottle and it looks like Hydrocodone is the generic for Vicadon. His is 5-500M (whatever strength that means)
Sounds like it's basically the same. 5 mg hydrocodone/500 mg acetaminophen (Tylenol). No, he doesn't seem more confused when he takes it. Actually, he is more "with it" when he takes it because it helps relieve some of his pain. He has spinal stenosis, a back injury and arthritis of the spine. His other medicine for the arthritis is Lodine. There should be something besides narcotics that will give them relief from some of their pain but we haven't found it yet. We haven't tried the fish oil. I will ask his doctor about that. Would that work on his kind of pain?
Even with all his pain, he is never grumpy or hateful....always sweet and loving...just depressed sometimes because the pain never goes away.
Dazed - The spinal stenosis also gives my DH constant pain. Our GP is trying him on Tramadol HCL for pain instead of the IBO. This is the generic med for ULTRAM or something like that. Humana will not pay for the Brand. The Brand is delayed release to take 1 a day but the Tramadol HCL is 4 times a day. The Dr. didn't know about the 4 times a day so I have to call tomorrow for a new prescription.
Is your DH bent over from the waist like mine - at 2:30 on the clock dial? I am going to order some of the pharmacy grade fish oil for both of us.
Oh Wow, Imohr. I researched Tramadol HCL. It's used to treat opioid dependence but is also very addictive. Sounds llike a vicious circle, doesn't it?
Yes, my DH is bent over with the stenosis and looks so very uncomfortable. I really hate to be giving him something that may make his confusion worse, though. Let's try the fish oil. Maybe that will relieve some of the pain without the opioid dependence.
This discussion probably should be on a medication thread. Joan may want to move it because we're supposed to be talking about sleeping all the time. :-) Sorry, Joan.
My DH, probably mostly stage 6, sleeps a good part of the day, but not so well at night. As far as waking him up during the day, forget it. If I succeed, he would be back to sleep in 2 minutes. (One evening he fell asleep at the dining room table with a dish of chocolate ice cream in his hands.)
He goes to an "Intermissions" program here at the retirement home (10 to 2, four days a week). Complains about having to go be with "those dummies", but sometimes he comes out with a big smile on his face.????? I need it for my sanity, to have some peaceful, uninterrupted time. He is a shadower. Wants to know where I am at all times. We have separate bedrooms, but he will come in at night to make sure I am there.
He had been on Aricept about five years, so the neurologist suggested we use the Exelon patch instead. Been off Aricept and on patch only 4 days. Do not notice any difference. Lots of other meds also.
He grumbles a lot, but thank heavens, no violence. He is 80 years old.