Crying and moaning in sleep. Is this common with dementia?

How sad and troubling this must be for you. I don't have any suggestions or insight but just wanted to offer my concern for you and your mother.

My mom (and I) are dealing with dementia. She cries often since this began. I tell her I've never seen her cry in my life until now and she agrees. When I ask why she is crying at that moment she always says she doesn't know. Watching my mom losing her battle with cancer and pulmonary fibrosis is difficult enough. Everything that goes with dementia just takes heartbreaking to a whole new level. For background: We live in separate apartments in a 4 family (ours) house. She has round the clock care other than 3 hours in the morning and 2 at night. But I am the only responsible person. There is no other help other than the people who are paid. Hospice only gives 15 hours a week. And at this point I don't feel safe leaving my mom with the people from there. That's all for now.

2Tired, could your Mom maybe have a urinary tract infection that makes her more restless since she is needing to go to the bathroom too? My Mom gets restless and babbles and yells at night when she has a UTI until she gets an antibiotic for a few days and gets rid of the UTI.

In answer to your question, yes, it is the dementia. Before quitting my job to stay home and take care of my own mother with dementia I worked in nursing homes for many years. It was very common to see the elderly with dementia crying or moaning there. It is very much like having a child that knows that something is wrong but can't express to you what it is or what they are feeling. My own mother doesn't usually cry or moan, but she has started to make these whimpering sounds. Yes, you are right! It is a very heartbreaking process! My mother doesn't even remember who I am anymore. She often wants to go home and thinks her home is with her mom and dad, probably because that is the time in her life that she remembers feeling safe. Sometimes when I tell her that they have been long gone she starts to cry as if grieving all over again! I guess the best we can to is to offer some sort of comfort and reassurance that everything is okay and just be at peace knowing that we are there for our loved ones while they are still alive.

My mom had Lewy body and Parkinsons, went thru a period where she was hallucinating. She didn't cry and moan. My sister and I took turns sleeping with mom so dad could get some rest. She would constantly ask to get up, go downstairs. After sometime of not being able to console her we came to discover that she was seeing people (cleaners she would call them) in the room at night. When it came to the point that she slept all day and was awake all night the neurologist suggested seroquel. We gave half a pill at 8pm and the other half at 10. This worked somewhat but she would still be sleeping most of the morning. At this time a very low dose of ritalin was introduced. This combination allowed her to get the rest she needed (and us) during the night and not being so out of it in the morning. It took us a while to have mom open up about what was causing her not to be able to sleep at night. If this is the case, don't say what she is seeing is not there because that could just make matters worse. This may not be your moms problem at all but just a thought I wanted to throw out there. It is heartbreaking to watch someone cry and not know how to "fix" it. Good luck.

I don't know that crying and moaning in sleep is unusual with dementia - everyone is so different. I do know that this has to be terribly upsetting for you. I'd talk with the doctor about it and make certain that she doesn't have any pain that could be eliminated such as something from a UTI, arthritis or other issues that may go under the radar.

Please keep us updated,
Carol

Well according to Moms doctor she is doing just fine. I have never actually seen him examine here, he simply goes by her bloodwork, but that's the way doctors are in these parts. Her previous doctor ( and Dad's ) was just the same. He will tell me "she's doing just fine" and send us home. I have tried to talk to him, but to no avail. I must instead talk to his front desk, and they advise me. They do not seem to be very concerned that she may have dementia. She is always fine other than having hearing difficulties when at the doctor. I asked him once, could she have a urinary problem, because she had an awful odor. He just replied that her bloodwork showed "no problems".

My husband, who has frontal temporal lobe dementia, does these same things at night. This has been going on for about a year and a half. We have tried (with the doctor) many different meds, different doses, changing times of taking meds, etc. None of this stops the symptoms. He also has hallucinations.
When daylight comes, he doesn't usually remember any of the thrashing and screaming of the night before.
Yes, it is very hard on us. When this begins to happen in the night, our sleep is very sporadic, if any, since we are just waiting for the next episode to happen!
It is heartbreaking, emotionally and physically draining. I guess I'll just say, for now, I'd rather have him home with me, rather than in a facility.
Try your best to take care of yourself!

my mother in law talks all night loudly and yells about needing help also. but I just let her go through it and she finally calms down and goes back to sleep. She is so afraid of dying that that is why she calls for help, I think. When she is cognizant the next day, she remembers nothing.

I heard about a home where they reverse the day and night, i.e. the residents and staff are awake all night going about normal routines, meals etc... and then in the morning everyone goes to sleep. Apparently it has been working well.

Thank you all for your kind responses!

Seems our only alternative is placement in a home, but most of us cannot afford it. If you aren poor, and you aren't rich, you are condemned to do all the care yourself. It is not fair and I am getting sick of it!

My Mother just started that stuff this morning. She has had days and nights mixed up for about 8 months. This morning she was crying for someone to help her. She wanted Joyce, that is me and she keeps asking where the other Joyce went. She wants to go home! I hate this and feel sick in my tummy. She just keeps crying and saying she can't figure this out. What is going on? I will call the doctor tomorrow. I don't want to spend the whole day at the hospital, spent last Sunday there for her URI

My mom also moans, whimpers, is restless and talks in her sleep, sometimes calling out to God as well. Sometimes I try to wake her, thinking it might be a bad dream, but she is still at a different level of consciousness. She is convinced she is dying, she can't feel her feet, and the carpal tunnel syndrome is terrible at night. We have put in a second request for another referral for the surgery (it was scheduled at one point but we had to cancel). As many of you experienced, she has no recollection of it in the morning. The doctor says she's fine, too, but the medical establishment's perception of health is the absence of clinical disease.

I don't know if this will help but worth a try. I don't have dementia but I do cry, moan in my sleep and appear to be waking and "out of it" with no memory of it in the morning. I in fact only know of this thanks to my late partner telling me. What we found helped was for me to have a small dim light on all night. Also to have pillows (cushions in the USA?) on one side of me. If they are in danger of falling out but a swim noodle under the sheet & it will hold the pillows. This didn't completely stop the problem but it did lesson it. Since being widowed I've added a very soft throw which is often beside me as too hot as a cover. If I'm half awake & distressed I can reach out for the throw and the warmth & softness comforts and I sleep again. After my beloved died I gave up my light & pillows for a while because I felt that an adult shouldn't need them. I now know that I wake much more refreshed with these aids. Also I find it helpful to have a clock with a gentle tick in the background.

Sorry if repeating but just can't read all the post right now. My Mom does the same thing occasionally. Its a night terror type of thing. If she goes on too long, I wake her up and have her open her eyes. I have talked to her neurologist and this i normal. But, if happens more than once a week, he will give her something to help stop them.

College, there is medication for ur Mom.

After suffering thru many similar nights with my husband, I have finally realized that when he starts the moaning, etc. I get him up to the bathroom. With that exercise when he is back in bed he will usually go right to sleep. (No he usually doesn't go but his diaper was very wet...so I am assuming that was the cause of the moaning and being uncomfortable.) While I hate waking and getting up in the middle of the night...at least afterwards things settle down..

2Tired - If that is her doctor's response I would get another doctor, preferably one who is a geriatrician - that is, one who specializes in elder patients. I'd also INSIST on a urine sample.

I also agree with others here that she may have pain that is causing her discomfort, and the moaning and crying. Can you give her an aspirin or other analgesic before she goes to bed at night? (I have arthritis myself and often take a couple of Advil so I don't wake up in pain during the night. They help me get a good night's sleep.)

But mostly I think you need to see another doctor!

Despite my surrogate dad having dementia, he never, ever made a sound as he slept. I'm not sure how common what you're describing really is, all I can do is tell you from my own experience. I had an elderly friend who was suspected to have dementia, and he frequently talked and cried out in his sleep. It was only suspected he might have dementia but only his doctor knows for sure whether or not he does. He has since been put into a nursing home because he put himself there through self-neglect. He could've avoided it as we all know.

2TiredinFlorida....DUMP that doctor!! There have to be some that care!

Private1 ~ I don't understand how he could have avoided it through sellf neglect.

My dad has dementia. We learned this shortly after my mom died a little over a year ago. He has been in a care facility about a month for rehab. He was hospitlalized for colitis. He has lost a lot of weight.
Before he got sick he was feeding himself, able to walk around, go for walks down the street and back. Aside from loosing my mom, his dog died recently, and we had to move him and sell his house and most of his belongings. The care has began to get overwelming. He needs full time care but the nursing facility is saying he is only at a stage 3. We (my brothers and sister) all have full time jobs and can not be ther 24/7. He only has medicare and was a veteran but not during war time. We can get home health but only part time. He has some money from the sell of his house, but that would run out within a couple months. Then what? How can a doctor make the decision on wether he needs full time care without living with him day in and day out. I am not saying this is what i want for him but he cant be left alone. And we have to work. Any suggestions. We dont make the money it cost for full time care.

Is it possible for you to find a doctor that is more familiar with aging and dementia? I read that one of the earliest markers of Lewy Body dementia are sleep disorders. There have been some really good comments on this post but I think you can address only by trial and error. My mother died after a very long battle with (undiagnosed) Lewy Body dementia. The diagnosis came three days before she passed away. I have had a sleep disorder my entire life that has gone untreated. On the nights I have problems, I wake up sad and drained. Some nights, I awake laughing in my sleep and have a slightly better next day. Even though it seems abnormal, sleep disorders are common with dementia. Your doctor might be trying to say "this is normal" when he says "she is fine". The distinction between normal and fine needs to be made at some time.

My many years of nursing tell me that she may be experiencing pain. At the age of 95 most folks have arthritis. Do ask her if she is having pain,& then ask her to give it a number if possible between 1 to 10 (highest). Then ask her if she is thirsty. Sometimes the simplest things help. Sometimes they just need someone to see if they are alright.. Often a back rub , a soft pillow, or a change of position are all that is needed.

My MIL spent most of her last year with lung cancer at our house. She did not have dementia that we could see. For her last two months she could not sleep--We could hear her about 2am, saying over and over "God have mercy! I want to die!" Her doctor tried every me he had available, and nothing worked. Some of them immobilized her, but she would still lie there moaning. Her doctor told me that what she could face during the day and what she could face at 2am were two different things. She spent her last two weeks at another son's house on hospice; she had several daughters fairly close there and my SIL didn't work. As it turned out, the hospice nurse called her doctor (in my area) for stronger pain meds, and they called and asked me to go get the meds from the doctor (it was a narcotic that they couldn't do on the phone) and bring them, which I did. I volunteered to do the night shift while I was there, as I had had two weeks of quiet nights. She talked quite a lot during the night, seeing her mother and sister who had already passed away, and died peacefully about 6am.

I'd ask her doctor about a low dose of Trazadone (.25) It's very effective at stopping nightmares. My doctor prescribed it for me years ago and it's still effective. I still dream just no terrorizing ones.

Most of the time mom sleeps very deep, but every now and then she has nights where she is talking to her mom, sister, or my dad. All who have passed. She will even get up and say, my mom is coming for me and look out at the blackness of the night and get distressed when her mom doesn't show up. Not good nights. Thank God it doesn't happen very often.

tlhanger, how mournful! Such a feeling of longing and abandonment for your mother. My mom is also longing for her mother who died when she was young, as well as for her dad. She is missing dad terribly now, and keeps asking if he's dead. Talks about how God has taken everybody away from her. Dad used to see and talk to dead relatives, too, for a couple of years before he died. It happens so often I think there must be something to it.

Is your mother on Namenda for her dementia? My mother had similar reactions and it was found to be a side effect of that medication. She was taken off and a couple of days later the systems stopped. The next problem that developed was that her dementia and her behavior became worse rather quickly. Take her to a neurologist right away. It's a shame they have to suffer like this and it's so hard to watch. Good luck and God bless.