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Is sleeping all day and refusal to get up one of the stages with dementia/alzheimer. The care giver tries all day with no luck. I will call home and tell her I'm on way home so we can leave the house and she will get up for a short while.

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Quite honestly, she is going to be in bed a lot. Heck, some days I wish I could stay in bed longer and I'm 69 and 1/2 years of age!
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I think some might think this answer flip, but I do sincerely ask, why do you care? It's not like she will get well. If she's resting peacefully and sleeping at night, I say let her be. Sleeping a lot and refusing food is part of the death process. As much as we don't want it to be true, we all die. Palliative care is my answer. No extra meds unless they provide pain relief or other sorts of comfort. God bless you both.
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Blue55. michaeljfox He had article on "freezing in place with Parkinson's".Also the UStep ll Walker had a light accessary for it that helps with that problem. LBD and Parkinson's are related
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Blue55. My Mother was taken off of aricept and namenda. See if they will put her on Exelon Patch and lexapro and small dose of Seroquel if she needs it. Also my Mother takes Nutrigold Brand of Ashwaghanda it is a potent over the counter medicine for mood elevation similar to Ativan. As always, check to see if it is okay with Doctor. Also check her oxygen level while sleeping to see if she is getting high enough level. And, you got her blood work done for B12, Thyroid, etc.?
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Teepa Snow's video clip on youtube -- understanding behavior problems in lewy body dementia -- is the video referred to above.
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Definitely check out Lewy Body Dementia.
I understood hallucinations are typically the key to diagnosis. Frequently about children and animals.
We figured out my mom had LBD before the geriatrician was willing to diagnosis her with it. She also has some parkinsonism. Also check out www.lbda.org for info and caregiving help. My mother definitely now acts like the example in the video. It is also extremely variable--throughout the day and day to day.

NYU Langone Hospital in NYC has done a lot of work on it.
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Blue, perhaps if you post this as a new question you will get some responses. I would be interested as well in hearing how others got a diagnosis and found a doctor who knew enough to look for the differences between parkinson's, parkinsonism and LBD.
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Yes Carol511 we have taken her to a neurologist. She did not do much. She diagnosed her with essential tremor (part of me thinks she has parkinsons or if not parkinsons its definitely Lewy Body). She was supposed to go back for further testing but my mom had a fall an ended up in hospital and then rehab. When we took her back to the neurologist which was months later she was on aricept and namenda and the neurologist saw her for maybe 15 minutes and said she seems much better . Okay well I don't need to see her again unless anything changes. She did say she has orthostatic hypertension. She is seeing a geriatric psychiatrist every two months. He has not said anything to us what he believes her diagnosis is. He was the one who put her on namenda and then changed her over to namzaric which is the combo of aricept/namenda. He claims she is doing well and is amazed at how good her memory is. Her memory is not an issue. People just assume because her memory is good that she doe not have any form of dementia. She cannot write her bills out anymore. She gets confused when trying to do anything with numbers. She stopped driving thank god and she did that of her own choice. Her main issue is she has periods when she is shaking so much in her hands that she has trouble eating and then she has fallen a few times this past year and she claims she gets dizzy when she stands up. She was having a period of time when she was talking out loud in her sleep for about two months. That seems to have stopped for now. I give her 3 mg of melatonin at night and she is on remeron which helps her sleep. She is now going to PT twice a week to help with her balance.
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As others have mentioned here, definitely get her thoroughly checked for physical problems. If there are correctable physical problems, definitely take steps to help her correct them. If the problem persists when she should be recovered, or if there happened to be no physical problems whatsoever, you may have to take it up a notch and roust her out of bed or even physically remove her from the bed. Sometimes when there's no reason for a person to be in bed all the time, sometimes drastic measures must be taken to get the person out of the bed.

Is it possible that person is simply sleeping out of boredom? This can be a strong possibility if there's no activity for the person to participate in. This can happen when there's not enough money for activities or even hobbies. If the person doesn't even have a social life on top of that, sometimes all there is left to do is sleep if there's nothing else to do, specifically things the person especially likes. Let's say you put yourself in the person's position and there's nothing to do that you like, you have no money and hardly any social life. What else is there to do but sleep! I was actually through this very same stage after my rescue from my abusive parents. While in state placement, there was nothing around for me to do that I liked and I had no social life because I was being harassed and hateful he mistreated by the other peers. The only thing left to do since I couldn't get out of the situation is to go to my room and stay there. There was nothing in my room to do and since I had no roommate (which was good for me), the only thing I could do to make the day pass faster is sleep. There was nothing else to do but sleep since I had no peer interaction and I would not interact with anyone who hated me, I just wouldn't be where I wasn't welcome so I just went in my room and slept. This went on for a while until the staff came in my room and took steps to roast me out of bed, and when I was physically removed, I didn't came combative and violent. They did not care about the situation and took no steps to place me elsewhere, they really didn't care and they knew what the situation was. There are some situations where it's OK to get someone physically out of bed, but there are other situations where it's not OK if you're not going to do anything to resolve what's causing the problem. Don't bother the person if you're not willing to correct whatever the underlying problem is. My situation actually went on four long painful years as the same situation continued and no one did anything to stop it, it was an endless vicious cycle. It was as though I was a fighting dog put in to the ring to fight only to be punished later despite my best effort to avoid trouble and stressful triggers, Yes, I was set up. In the case of your loved one though, I'm not sure what's causing this person to sleep, but there are multiple situations that can cause this. Besides looking at this person's health, also look at their money situation as well as their social and activity situation, because boredom can and often does cause people to sleep. Other things that can happen is if the person happens to spend excessive time on the computer or doing other things in excess including TV, all due to boredom. Definitely look long, deep, and hard into this person's situation and find out what specifically is causing excessive sleeping because again, any number of situations can cause it, you're talking to someone who's been there and survived.
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Take her to a psychiatrist. They are the ones to dispense meds, not the psychologist.
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Have you taken her to a neurologist/ psychiatrist? LBD is not total progressive memory loss. They can be very lucid at times. My Mother was diagnosed and then just recently another psychiatrist said he thinks She has vascular dementia. They don't k ow without autopsy. My Mother s on Exelon Patch now and it is working tremendously. It increases the chemical in brain that allows the nerves to communicate. P
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The short answer is that LBD can only be determined through autopsy.

My husband was first diagnosed with Parkinson's disease but a few months later, following neuro-psych testing the diagnosis was changed to LBD. One of the main differences between LBD and other dementias is that hallucinations, especially of animals and children, are common in LBD. It was partly their presence that the diagnosis on LBD and Parkinsonism was made.
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Giveahug
How did you get the diagnosis of Lewy Body dementia? I am curious. I believe that is what my 80 year old mom has. Her doctor diagnosed her with early onset Alzheimers but I really believe she has all the symptoms of Lewy Body. Prior to anyone noticing anything different she had hallucinations where she saw animals on her bed. She was then saying a few things that raised a few flags with my sister and I. She was mixing up the generations of people in our family. But she has had a tremor in her hands for quite a number of years which has goten worse and a neurologist diagnosed her as having essential tremor. Her legs have been weak for a few years where she could not walk very far at all. She would complain of feeling dizzy when she stands up. She has fallen in the house this past year at least four times. Thank God she has not ever injured herself or broken any bones. There are days when all she wants to do is stay in bed. She can seem fine for a few days or even a week and then all of a sudden she has a day where can ban barely hold a spoon from her shaking and she cannot walk without losing her balance. She starts to walk and its like she freezes in place and can't move forward without someone holding on to her or showing her how to walk. Yet her memory is fine. She knows who everyone is. She is not repeating herself. She does not have any sundowners, she doe snot wander off. She sleeps all night thank god. She is on namzaric (aricept and namenda combo pill) and remeron which were prescribed by her psychiatrist. She has orthostatic hypertension (another symptom of Lewy Body) and takes midridine three times a day. But yet no one will come out and diagnose her with Lewy Body. Thank God she is still very pleasant. She is living with me but she has a caregiver with her while I am at work. She can stay alone for a few hours but I am uncomfortable leaving her for any great length of time. Why is Lewy Body dementia so hard to diagnose?
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It could well be her heart working to keep her alive. That's what our hospice nurse tells us. At this stage a body is very intelligent and knows when it needs bedrest.
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You need to have blood work done for her vitamin and mineral levels, thyroid etc. She may may have deficiencies.
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My mother has been this way for years and she's only 74 now. It's primarily because of the pain med addiction, which has taken a toll on her mentally and physically. I tried and tried, she just wants to sleep.
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I agree about the memory not necessarily being diminished in LBD. Delusions were the thing that finally lead to a psychiatrist and diagnosis in a family member, up until then all his difficulties were blamed on possible stroke (don't ask me how the docs concluded that) and his heavy drinking.
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clarinetcathy, did you know that memory loss is often NOT the primary symptom in LBD? The doctors should know that and not be surprised. My husband had to take pills to sleep at night and also a drug to combat excess daytime sleepiness. I know that not everyone "believes" is using so many drugs, but but my husband had a fairly high quality of life for his 10 years of LDB. He golfed and bowled and went on vacations with me, including cruises. He attended Adult Day Health Program.

He didn't have a "mild" case, although his symptoms were mild. The autopsy showed a very severe case of LBD.

Sleep is a particular issue in LBD (it is in many forms of dementia, but LBD has its own challenges). Once you are through the diagnostic process, I hope you can find a doctor highly knowledgeable and experienced specifically with LBD. That makes a huge difference, in my experience.
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My mother is the same. She is in the midst of being diagnosed with Lewy Bodies Dementia. She sleeps all day and all night. Apparently long naps are part of it. Could your mother have the beginnings of dementia? We used to bug her about it but have given up - this is due to a change in her brain. She will get up when we come and we do take her out for drives and dinner. she enjoys that - her memory is still quite good which si confusing the docs, but she has several other of the symptoms.
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Check her for dehydration. Gently pinch up the skin on the back of your hand and notice it quickly flattens out. Now go check hers. If it stays up, get her to the ER. If it goes down slowly, give her fluids orally.
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