Are there 'dementia terrors' like night terrors?


MIL lately (6 months or so) talks in her sleep and it's getting more frightening. Last night she was in tears and panic and bewilderment about "I don't know what to do, where to go, how to do it" She begged for help for about an hour and I asked my husband to get up with her. He got up angry until I reminded him he told me to tell him to do it. He couldn't calm her down.

We took turns getting up with her from 11:15 until 2:00 AM and I finally went into her room for good and sat there until 4:00 AM when he came and got me and made me come back to bed.

She continued to have terrors the whole time, however, and only quieted down when she felt my hand on her. She saw 12 women in her room trying to give her pills. She saw soldiers. She thought her Mommie was sick and couldn't find her. She was walking in tall grass and lost her shoes (She can't walk anymore). She always felt sick and wanted me to call 911 or take her to the ER or call a doctor to come here. She kept saying, "I just don't know what to do. Tell me what to do." She kept calling out for her son "Jimmie" I told her not to wake Jim up. It would make him angry again. Usually that stops her talking. She worships that man and wouldn't do anything to upset him, but this thing that had hold of her wouldn't let go.

She was cold and was sweating until the bed was wet. I told her I couldn't put anymore blankets on her, she had 4 already. (We had given her a Tylenol PM to help her sleep, because she had been acting strange all day, but this was even worse than that.) She asked me for something to help make her feel better, she thought she was going to throw up. I gave her a phenergan. It took a while to take effect. Then she wanted a cup of coffee--it was 3:45 AM. I told her NO! She wanted an Aleve and I thought, "Oh, what the Hell. I ought to give her three or four or maybe the whole bottle. I gave her one.

When Jim came to get me at 4:00 AM, she was quiet, so I left. Maybe it was the Aleve that helped. I don't know.

She is still in that other world this morning. Last week she had an angiogram of her right thigh and they put a stent in her leg from her thigh to her knee trying to restore blood flow to her right foot to save a toe. Why??? Just cut the damned toe off and forget it. She can't walk anyway. That frigging operation cost Medicare $20,000.00. The vascular surgeon told me himself. Not to mention the collateral charges: hospital, nurses, radiology, drugs, lab, hidden crap. etc.

Anyway, she came home from the hospital going in and out of this condition and hasn't been right yet. By the way, she also now has MRSA. from the infected ulcer on the toe that they are trying to save. Now our whole family, caregivers, and anybody that comes here, has to be careful because she is here.

She cried out in pain one evening holding her crotch and begged to get medical attention. We thought her catheter might be in trouble. We got her to the ER and she politely told the doctor her fingers and toes "sometimes tingle".

He told her she has diabetic neuropathy, but had also done a urinalysis. She has always had a UTI. We could have told the moron that. But he told my husband "Sometimes a UTI can cause a little confusion". So on the way home from the hospital my moron husband says "I'm glad to know her confusion is from a UTI and she doesn't have dementia. I never thought she did anyway" Geesh!

This morning, after a week of bactrim, her urine is nearly clear. I told my husband, "this activitiy she is exibiting is not from her urinary condition!" He said finally "Maybe it's Alzheimer's. I don't know. She didn't know me when I went into her room to give her the morning pills awhile ago. I think she is in much worse condition than we think she is." I asked him if he wanted me to call her doctor and he said not to. He said to let it ride for awhile.

I believe he just wants to let her die here. If so, I will have to set fire to that room. I'm afraid we have another day of this type of activity today and another night tonight. He has consistently refused to put her in a nursing home, though. I can't sit with her nightly. If this becomes a nightly thing, I WILL insist on a full-time night nurse.

He now helps me put her on the potty, by the way. She can't get there by scooting from the bed to it, and I can't pick her up to put her on it. He told me to call him and he would help. So, I do. He does. Generally, though, she's in the process of pooping in her Depends before we get her on the potty and I have a bed, bath and beyond experience again.

I just pray to God to take her soon and ask all my Internet friends to put me on their prayer chains, too. If not for me, for her. I'm sure she is in a living Hell right now, too. I never liked this woman, but I didn't get much pleasure from seeing her like that last night, or even still like that this morning.

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I'm sorry I read your reply wrong, jeanne. My mistake. I'm brain dead today. She can't stand, walk, or even sit up for any length of time and has to be transported by stretcher everywhere. We've tried a wheelchair and it just won't work, either. Not even if she's strapped in. She's like a Raggety Ann doll.

Her doctor's office won't let you near the doctor. He's appointment only (it's a $$$ thing, I believe). Now, he's the man my husband asked if he would be her doctor. He's my doctor and my husband's, too. But, I'm able to get there and so is he. We never realized it was a problem and will have to give some serious consideration to changing doctors in the future.

I do have the ability to send him an email, though, and I will do that in the morning. If he's any kind of doctor at all, he will call me or my husband and discuss this with one of us. I'm going to ask him to call Jim. I believe he will suggest a nursing home again.
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I understood what she meant by "putting me away" -- and my point was that is the wrong way to think of care centers.

Why does she need an ambulance to go to the doctor?

Won't her doctor do some phone consultation? Both my husband's geriatrician and his behavioral neurologist understand the difficulty of getting him in (although he doesn't require an ambulance) and they will talk with me and advise me and even do prescriptions based on phone and email messages.
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I took her to see her surgeon for the follow-up visit today and asked him privately about her night and sometimes day terrors. He said it should have nothing to do with the anesthesia administered during the angiogram. That stuff should have been out of her system within a half hour of the surgery last Wednesday--not still here a week later. He said to contact her doctor and let him know what is going on also. Our problem is that he will want to see her in his office and we just can't pay an ambulance trip of $850 or more just to take her 2 or 3 miles to his office. She will have to need a trip to the ER by ambulance before we can get her to him to see her. And then he will have to admit her to do a work-up on her. Just a visit in the ER won't be enough.

MIL's comment about "putting me away" didn't mean putting her out of her misery (or ours), but she meant go ahead and put her in a nursing home. The ironic thing of it all is that she actually liked those 17 days she was there. (so did I). I just don't know how much longer it will take since she seems weaker by the day now. I'm hoping the time is getting shorter and shorter.
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funnierthanme, I'm so sorry for the continuing drama.

Perhaps it is more common to talk to deceased people toward the end, but I know that when my husband was hallucinating early on he saw his deceased brother. That was nine years ago.

It does take a doctor's evaluation to decide when hospice is appropriate. It is a little harder to follow set guidelines when dementia is involved. It would not hurt to contact a hospice organization and get their opinion.

Does your husband think his mother can control the talking at night? It seems strange to say that to her when of course she wishes she didn't do it, too.

Of course you should not consider putting her away. Not now. Not ever. Finding a good care center for someone who needs it is NOT putting them away or abandoning them. It simply allows others to take on the day-to-day (and night-to-night) hands-on care while you go back to the roles of loving son and loving daughter-in-law. Husband can have breakfast with her everyday if he wants to. You both can join her for dinner once a week. Maybe you would bring her to your house for Sunday dinner. Either or both of you can visit every afternoon if you want to. And one of you will have to be advocate for her, dealing with the care center staff and ensuring that any issues and problems are resolved promptly. I don't know whether a care center is the right answer but very definitely do not consider that option as "putting her away." That is a dreadful way to look at it, and maybe it is the way some children do view it, but I am quite sure that you and your husband would not behave that way.
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Jad, first of all, thank you for the hug. I love them. You need hugs, yourself, too, though. I believe everyone here needs lots and lots of hugs and a great big group hug would be so nice.

MIL has a doctor's follow-up appointment with the surgeon at 11:00 this morning and I intend to talk face to face with the vascular surgeon about this. She has improved a lot over the last couple of days, but during the night last night she shouted out about talking to her deceased husband again.

Several people have told me that when they start seeing deceased relatives the end is near. That would be so encouraging except that she seems to be improving at times. I just wish she was critically ill of something so she could be hospitalized and have a complete work-up and somebody could tell me something, anything. My husband talked to her last night about her talking all night long and how he wished she didn't do that. She said she wished she didn't do it too and she would try not to--like she has some control over that. But she also said "Maybe you should just go ahead an put me away and get it over with".
And, his response, like he tells everyone else, was, we're trying to keep you out of a nursing home as long as we can and we will continue to keep you here as long as WE can. His aunt once told me, "Honey, this will either make or break your marriage to him. There are times when I am convinced it has broken it in half like a brittle stick and then he stops at the store and buys me a can of beets (something I never buy myself because even though I love them, I'd never be so selfish as to buy something only I would eat. I could have cried when he did that. I haven't had beets in 20 years or more. Or he buys me a Butterfinger candy bar. Damn him!

Nancy says she worked for Hospice and she, the authority about Hospice, says she doesn't think she is ready for Hospice yet. Doesn't it take a doctor's evaluation to make that decision?
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Funnier, I've been thinking of you, hadn't seen a post in a long time. My fears have been resolved, she is not doing any better. My husband as you know has Parkinson's and he has night hallucinations, but nothing like you are talking about, he also is on seroquel, and it just helps him sleep. UTI's can be very dangerous in the elderly, you need to find out if she is septic, because that could be causing a lot of this. Any infection can really cause a change in personality, my husband has done that a couple of times. PLEASE be careful with the mersa, it is so contagious!!! Bless your heart, I just don't know what else to say to you, I feel so bad that you are going through all of this with such minimal help. I really think that she needs to be seen by a doctor though. Don't listen to your husband, call her doctor and tell him everything you told us, something is definitely wrong. Although a lot of time when they start seeing relatives, the end is near. Your doctor can get hospice care for her, and they are just absolute angels. God bless, you are in my prayers. Take care of yourself, okay?? JAD711
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Jeannie, her other symptoms besides the terrors are that she sees her husband in the hallway with pom poms doing cheers, she sees children outside her bedroom window, she hears her sisters (who are deceased) in our living room and wants to come in to visit with them. She hears all kinds of relatives here and can't understand why they haven't come down the hall to her room to visit her. She thinks I work here. Many times she doesnt recognize me as her DIL, but as an employee of "this nursing home". She asks nearly every night if she is supposed to say here tonight or go home. She asks me to apologize to everyone that she can't come in to visit with them but she is just too tired and hopes they will understand. No one is here when she says that. She hears music and singing and wants me to listen to it. I tell her I don't hear it and she sarcastically tells me "Well, YOU ARE DEAF!" When she says or does most of these things, I don't realize at first that she is slipping into that "other" place and that I should respond differently. Now I have to walk on egg shells when I am around her. When the pharmacy delivery comes and she hears the knock at the door, she tries to climb out of bed to answer the door, or she yells, "come in". I don't know how many symptoms she needs to have to convince anyone she has dementia, but I know she just doesn't have memory loss. Geesh, I have that myself. I know she doesn't hallucinate from medication this much. She goes in and out of these spells of dementia. I believe she is now getting Alzheimer's disease. Medicare won't pay for an ambulance to take her to a doctor's office, so we can't get her to her doctor and he won't come here. We will have to wait until she actually gets sick enough to go to the ER before she can see a doctor again. She has to be transported by stretcher. She can't even be moved by wheelchair. Her last ambulance trip was $851 for 4 miles. We have to pay that one. She doesn't qualify for Medicaid, or it would be paid by Medicaid.

Since she has MRSA, I've had to become sorta a nurse. I change the dressing on her infected toe daily. I'm getting pretty damn good at it. Even the doctor said so. I need to go do it now, too. Thanks to the hospital last week, we have a good handful of rubber gloves for free. Home health care is bringing me a supply in a few days. They'll end up amputating the toe anyway, in my opinion.
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I've read that a brain-fog (confusion) from surg/hospital/anesthesia can last for a long time. You said she has MRSA infection. ANY infection in the elderly can cause the behavior -doesn't have to be a UTI. And the elderly, particularly with dementia, are so sensitive to meds and I think it's horribly difficult for even the best of doctors to figure out what will help and what is going to make them worse. It's a freaking nightmare! The panic and tears and confusion are old hat to me now. They are scared and want help, but can't tell you what to help. Everybody is powerless. Redirection helps sometimes. Holding a hand sometimes, sometimes petting & reassurance just makes it worse.

It might also be useful to pursue the UTI possibility further. Some bacteria need to be cultured -they won't show up on a dip-stick test (shows nitrates changed to nitrites and some bacteria don't affect the nitrates). UTI bacteria must be identified to determine which anitibiotic will work (sensivity to it). Delirium, confusion and hallucinations are pretty common indicators of a UTI in the elderly (but any infection will do it too). Sometimes the usual complaints of burning, frequent urge to go & back pain of a UTI are absent. I can't believe her doctor actually said UTI's can 'sometimes cause a little confusion..' What a freaking understatement!!!!!

And re: Seroquel to Here4her.... Sadly, it seems to me from what I've read in AgingCare posts and at other sites that this med and other anti-psychotics are employed frequently for dementia/Alzheimers disease in the elderly. To me it seems unconscionable because of the contraindications listed by the manufacturers themselves for Seroquel and others that they are 'not for the elderly' and 'not for patients with dementia' because the elderly can be extremely sensitive (adverse reactions and in some could be permanent) to it. Seroquel has a Black Box Warning. In the hospital my 90+ mother was put on a small dose of this drug when she had recurrent UTI that took over a week to identify because her behavior had become horrible. A psych doctor (she got put into the pysch unit just before the UTI was id'd) did not wait for the antibiotic to clear the behavior before putting her on Seroquel without my knowledge. Mom was started on the antibiotic 2 days after going into the Unit and her behavior should have cleared or been clearing after a week, but she was still having delirium, paranoia, hallucinations, restlessness, agitation, depressed, aggression/hostility, etc. I finally got bright enough to ask what else she was on. Seroquel & Effexor particularly caught my attention. I asked for it to be stopped and she improved, but her mental & physical functions have plummeted from where she was. She does have severe dementia now. Mom was apparently very sensitive to it. And Seroquel may not be the only culprit, but I think it was a major contributor to what little function mom has now. FYI -I read recently that Claritin is structurally related to Seroquel in case anyone has seen problems from that. I just got that one stopped (and another that could have been causing her added problems) for mom and have noticed marked improvement. Could have been only the other med, but......who knows? We're past allergy season anyway.

My heart goes out to you. Good luck in getting her infection(s) cleared up soon and I hope she will not develop dementia.
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Funnier. I'm sorry what you are going through. My mom did the same thing a couple months ago. Just "wham", had me up all night, believing things that were not going on. I was burnt out way before this happened.
They put her on seroquel. She went to respite and is still there.
You won't be able to handle this stress for very long. You definitely need help.
I love your Bed, Bath and Beyond saying. I have sure had more than my share of those. I thought I was in for the long haul, but right now I need rest and healing. Please ask your husband to Get you help or NH. I love my mom with all my heart, but it got me sick, depressed and in the hospital. Please don't let that happen to you. Hugs.
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When something goes haywire in the brain, all kinds of symptoms can manifest themselves. UTIs can also cause symptoms that mimic dementia.

Who diagnosed your MIL with dementia? How long ago? What are her symptoms other than night terrors?

Sleeping problems are extremely hard on caregivers. I could not have kept my husband at home if his doctors had not been able to resolve that issue with a drug. Do discuss this new development with the doctor who is following her dementia.

What could a nursing home do for your MIL that you couldn't do at home? Maybe nothing. But at the NH there would be 3 shifts of trained personnel to care for her. Each shift would be well-rested. If a crisis arises or the care requires more than one person there is always someone else to call on. The staff get regular breaks and vacations and days off. Trying to provide the same level of care in a private home that can be provided in a professional setting can be a real challenge.

I do understand the desire to have a loved one cared for at home. I'm doing it myself. But I have always known that I want the best care for my loved one and if/when the time comes that I can't provide it at home then I will accept other options.

If MIL is in the final stages, Hospice can be a great help.
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