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Sunnygirl1 Asked October 2014

How long does paranoia phase lasts with AD?

Does anyone know how long a person with significant Dementia, (Vascular and Alzheimers) will have paranoia? My LO has been in ALF for a few months and most of the time happy there and very fond of the staff.(She has severe memory loss, knows almost no personal information, is in a wheelchair from fractured spine and hand, can stand briefly, and is urinary incontinent. Was recently so weak she could barely get out of bed. Gets confused on how to turn wheel on wheel chair)

Only lately she's been wanting to go home and now is upset about lots of things. She is upset about things that make no sense. She wants to know who is doing this to her, but she can't say what it is. She says she's sorry for causing this problem, but she can't say what the problem is. One minute she has the paranoia, the next, she's fine and doesn't have it. She wants me to get the bottom of who is doing this to her, but she can't say what.

What's so odd is that her energy level is much better than before and she seems more alert. She's also on an antidepressant that seems to be helping the depression and pain. Now that she's feeling better, I guess she has more energy to be paranoid.

I just wonder if this goes through a cycle. Could she continue with the paranoia until she is no longer able to communicate verbally?

NewBeginning Oct 2014
Yes, Alzheimer's is a cruel disease.
Once it starts, it progressively gets worse over time.
When symptoms of Alzheimer's begin to show, the average lifespan is around 10 years.
When my mother first developed signs of dementia, she lived another 10 years almost to the day.
It's sad to watch a parent you love turn into a someone you no longer recognize, especially when they say hurtful things or don't trust you due to this cruel disease.
Try to remember them for the good times and what they taught you when growing up.

Sunnygirl1 Oct 2014
Thank you all for your advice and words of support. You are all so right on point too.
Update:
I visited a Secured Memory Care Unit last week and by Friday, I needed it. My cousin called and said she was at the mall with friends and invited me to join them. I went over and tried to redirect her and it worked, but a couple of hours later, she wheeled her wheelchair into the parking lot of the ALF saying she was looking for her car. (She has no car there.) I went back over and the ALF director and nurse suspected a UTI so they took her to the hospital. Her paranoia left and she became euphoric and giddy. They kept her in the hospital until Monday and she did not have a UTI. Sunday she had a bad delusion and they gave her a small dose of Haldol in the hospital. (I've read that's not good for dementia patients.) (She was already on Cymbalta and that has brought her mood up.)

We left the hospital and went straight to the Secure Memory Unit. She was happy to go since it's located in her hometown. She knew landmarks along the way and was thrilled to go! She immediately went inside and had dinner and began talking to her new friends. When I left she was smiling and watching tv with her new roommate!

The paranoia is gone for now, but could return. I get it. I think I will have her consult with a Geriatric Psychiatrist anyway to see if medication could help the bad times. I know there will be certain declines. I just need a couple of weeks to regain my strength and save my business before there is another crisis.

The director at the new place says she did very well last night even asked for assistance to go to the bathroom without prompting!!!!!!! Huge change. They say she may not need the pull ups. The former place put her in pull ups and says she was incontinent. I noticed that at the hospital she also said when she had to go to the bathroom. I'm wondering why she didn't at the the former ALF.

I also mentioned this on another thread I started about Haldol.

Thanks again all. This board is my only real support system. I have no one else to help with my cousin. I've been so stressed I have clinched my teeth and cracked one! Oh well.....in the scheme of life it's just a tooth right? lol After what we have gone through, it's not that big of a deal. Damaged brains and spines get my attention, but a tooth is just a tooth.

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Sunnygirl1 Oct 2014
Thank you all for such wonderful tips and great support. It means the world to me, as I have no one else to rely on. It's just me trying to care for my second cousin.

Update: I visited a Secured Memory Care Unit last week. It's a good thing, because by Friday, I needed it. She called me and said she was at a mall with friends and I should come on over. I went by the ALF and visited with her and tried to redirect. She insisted she had to be home by a certain time I convinced her to wait until I got all her paperwork completed and that would be some time next week and I would take off work and come over. She said fine, but after I left she went in her wheelchair into the parking lot to get into her car! She does not have a car there. The ALF called me and suspected UTI. We agreed to take her to hospital.

In the hospital she was almost giddy with excitement. Most of the delusions were pleasant, but one was not and they gave her an injection of Haldol on Sunday. (She went on Cymbalta a few weeks ago.)

We left the hospital Monday morning and went straight to the Secure Memory Care Unit. She smiled all the way over and was thrilled to be back in her hometown. She recognized it. She immediately ate a meal, something she's not being doing lately and was talking with her new friends when I

I have a separate thread about the Haldol you may visit.

She's doing much better there and I sense they know how to direct her more than the other place. They say she's eating well and even asking for assistance to go to the bathroom without prompting! She may go back to regular panties.This is huge as she was labeled incontinent at the former place.

I know what is going to happen. There are patients there in all stages of the disease. As I describe in my other thread, I'm going to consult with a geriatric psychiatrist if the paranoia resumes to see if meds for it would be advisable.
Thanks again.

Sunnygirl1 Oct 2014
Thank you all for such wonderful tips and great support. It means the world to me, as I have no one else to rely on. It's just me trying to care for my second cousin.

Update: I visited a Secured Memory Care Unit last week. It's a good thing, because by Friday, I needed it. She called me and said she was at a mall with friends and I should come on over. I went by the ALF and visited with her and tried to redirect. She insisted she had to be home by a certain time I convinced her to wait until I got all her paperwork completed and that would be some time next week and I would take off work and come over. She said fine, but after I left she went in her wheelchair into the parking lot to get into her car! She does not have a car there. The ALF called me and suspected UTI. We agreed to take her to hospital.

In the hospital she was almost giddy with excitement. Most of the delusions were pleasant, but one was not and they gave her an injection of Haldol on Sunday. (She went on Cymbalta a few weeks ago.)

We left the hospital Monday morning and went straight to the Secure Memory Care Unit. She smiled all the way over and was thrilled to be back in her hometown. She recognized it. She immediately ate a meal, something she's not being doing lately and was talking with her new friends when I

I have a separate thread about the Haldol you may visit.

She's doing much better there and I sense they know how to direct her more than the other place. They say she's eating well and even asking for assistance to go to the bathroom without prompting! She may go back to regular panties.This is huge as she was labeled incontinent at the former place.

I know what is going to happen. There are patients there in all stages of the disease. As I describe in my other thread, I'm going to consult with a geriatric psychiatrist if the paranoia resumes to see if meds for it would be advisable.
Thanks again.

Butterflyme Oct 2014
You cannot distract a Dementia/Alz patient with tv. I worked at a Dementia care home -None of the patients are watching trust me. They sit them in a room with tv and all their chairs are turned towards it but the Dementia patient cannot concentrate on tv half of them can't hear well either. My Mom seems to like hankerchiefs or wash rags I don't know why but its like a fetish of some sort. She can hold it for hours on end and if she can't find it all heck breaks out. You can try giving her a couple of those. Zyprexa really does work settling them down some especially for the night. I forgot once to give her a pill at night she was allover the place and non-stop mumbling, talking, etc.

Litldogtoo Oct 2014
@Senior Adviser - OMG, you hit every single aspect of what i'm seeing in my own mother. Suddenly, she's not interested in any show that has anger in it.

The only shows she likes now are the Price is Right, The Chew, and she used to like Katie, but Katie is 'gone' she tells me.

She'll watch a little baseball, she likes Dancing with the Stars, etc. Oh, and Lawrence Welk which is on PBS Saturday nights. He's a Godsend!

She has severe hearing loss with AMD, one eye is about 10% light coming in peripherally, the other is about 25%. That in and of itself floors me because I think How would I feel if that was me and I could hear and/or see stuff!

While it helps the patient if you explain over and over, it doesn't help the caregiver's stress levels, especially when the patient is trying to get a show that's not on just yet and the caregiver is dealing with, let's say, ants! crawling on the kitchen counter at the moment and/or someone at the door, with the dog barking :)

Thank you. You've described my mom to a T.

Litldogtoo Oct 2014
My doctor just told me that a person who tries to appease and/or reason with a patient that has dementia/alzheimers is just making themselves more stressed. There is nothing you can do that will ever appease her. All you can do is tell her okay, I'll look into that. She'll probably ask the same thing again. They just don't remember and that's what this wretched disease is all about.

My mother was diagnosed with mixed dementia, paranoid delusions. She was placed on Venlafaxine, Olanzapine, and Mirtazapine. She was doing well for awhile, but has encountered what I call yet another plateau, i.e.,,stage, where her attention is that of a toddler. Her short term memory is nil, long term better.

Wretched, wretched disease!

DeeDee55 Oct 2014
Sunnygirl1, I am experiencing very similar problems with my mom. However, my mom won't even take medicine. I am glad that your mom shows openess to meds because sometimes they can help eliminate or reduce the problem to a manageable size. I hope the best for both of you. Hang in there!

SeniorAdvisor Oct 2014
Confusion and paranoia have many causes. There is a lot of helpful information here but in addition I can say that paranoia can be caused by her failure to comprehend everyday activities. This can be compounded by hearing loss and poor vision. When the mind is trying to understand things there is a mental process that fills in gaps in information. In her case she may not fully comprehend all of the daily activities going on. Her mind may be filling in the missing information with bad information causing her to have fear and paranoia. It helps to explain everything even if you feel you just explained it recently.

In regards to watching television, of course shows with detailed plots are most difficult to understand but even comedy and entertainment shows can be difficult to follow. Game Shows are very good at holding attention spans. Although it might be difficult to grasp the entire shows concept game shows are generally upbeat. They are easier to follow in some ways because when show participants win everybody is happy. The audience applauds and cheers them on. This creates an upbeat mood that can be infectious and tends to keep an Alzheimer's patient engaged longer. You can ask the facility if they subscribe to the game show network.

chuff111 Oct 2014
You've already been given great advice from others, but I'd like to throw in my penny's worth. My mom has had a similar experience of having periods of paranoia, specifically, having delusions that someone was doing something to her (ie. moving or taking her things, coming into her room when they weren't supposed to etc.) Like your mom, she also internalizes things, saying things like "it's all my fault" when she thinks she's "making mistakes". As another poster mentioned, it's impossible to try to change their minds by rationalizing. Others have mentioned distracting your mom with activities or conversation, and that's great if it works. In my mom's case, however, her paranoia/delusions escalated to the point of a panic attack (and she'd never had one before), so the doc prescribed an antipsychotic drug (off label use for paranoia/dementia) which helped alleviate the extreme paranoia but unfortunately knocked her out for the whole day. I originally flipped out when I learned that the doc had prescribed an antipsychotic for my mom's dementia-related paranoia. I'd read about how certain antipsychotic drugs can make dementia symptoms worsen. Actually, this first med that was tried might have made her dementia worse, she remained very confused and knocked out cold mostly, so I couldn't tell at that point. About 6 months ago (when mom was still having periods of paranoia but not as debilitating nor as frequent), a neurologist who specializes in geriatric memory disorders, prescribed a very effective, second class (generally less side effects- than first line out, including no "zombie like" appearance) antipsychotic drug to take as needed. Her initial dosage was typically 1 x day, then down to 2-3x per week, then 1 x week. Currently, she hasn't needed this med for several weeks. My mom, like yours, is also being treated for depression, and the new med combo aka California rocket fuel (albeit a very low dose) has really helped! I am glad that you've seen a similar improvement with your mom's mood! Depending upon how long your mom has been on the depression med, it could still become even more effective over time. My mom is doing more things slowly but surely, things that she used to enjoy but for the past year has been uninterested in doing. Since your mom has more energy (btw-I can relate to seeing how this increased energy is connected to an increase in worrying) maybe you can find a weekly activity, (like crafts at a local seniors club) and make it a "girls' day out" for the two of you. Today, I took my mom to what she still calls the beauty shop. This was a big step for my mom, who prior to last October had her hair done professionally every week, and for the past year has had little to go anywhere. She got a cut, perm, and style, and she said that her hair was cut too short, but.... she got out of the house, was humming in the car to a song, keeps touching the back of her hair to feel the curl, and has asked me a few times if she should really sleep ont it tonight because she wants it to stay nice! LOL...so maybe she likes it a little after all! Good luck and take care of yourself.

Reverseroles Oct 2014
Dementia is terrible but I have to say my Mom is very happy. She cannot speak or walk and is incontinent but doesnt know it. She is always smiling, laughing or napping. Shes sitting next to me in her recliner happy as a clam, maybe the angels are talking to her. When my husband or son jokes with her she laughs hysterically, so its not always that bad. The bad part is that it goes on forever and we cannot leave the house without hiring someone experienced to be with her. The bad part is when she wakes up with a full diaper at 11pm, and that it takes 2 hours to feed her each meal. Other than that holding someones hand and listening to music is her passtime, she cannot barely see , nor understand what she can see, either. think Positive, I prefer this to losing my body and not my mind, at least they have no idea whats going on and are care free.

ferris1 Oct 2014
Correction, the paranoia will get better when she loses the ability to speak.

RCW6532 Oct 2014
Sorry to say that it may be there for the rest of her life. Dementia is about as terrible a condition as you can get and there is no recovery from it. You can learn to help deal with it better but it will not go away. I have worked and been around dementia patients for the last 10 years and there is no magic pill that will take care of it. Don't let anybody tell you that. It will not get better and it will not go away. Patience and love are all you can do to help yourself and your loved one. Good luck

Reverseroles Oct 2014
Sunnygirl1, sounds like a UTI to me and so common in those places, did she get checked for that? I went through this for a year with my Mother, she lives with me, and it was a rough year. Yes, where do they get the energy? Their minds are in a fast confusing motion I think!! Finally once Mom tried to walk up the hill from my home I called a neurologist. He put her on depakote sprinkles and she was a different woman, oh why did I wait a year? At first she slept and slept but after about a month was accustomed to the drug and she stayed on it for a few years. each time I tried to wean her off of it the aggitation and energy and paranoia came back. Finally she came off of it . It was a life saver for us. Its actually used for dementia patients but is a brain calming seizure medication. The neurologist said its safe for dementia/alz and he doesnt believe in using seraquel or any other antipsychotics on the elderly. Maybe you can ask her doctor and get her straightened out. Believe it or not, my mom was happier on medication , than off of it, so dont be afraid of it, they need it.

Lilacalani Oct 2014
Our brains are about 60 percent fat. Lack of dietary fat can lead to brain disorders. I bet you LO is on a low-fat diet. Giving her some fats -- quality fish oil capsules, coconut oil, etc., might help. Might have to start with low amounts and gradually increase them, if she's not use to them.

ferris1 Oct 2014
Since each person with dementia is unique, she will act the way her brain is responding to the disease. She will eventually lose the ability to speak, so just go along with what she is asking and tell her you will check into things. Love her no matter how she acts.

debparkhurst Oct 2014
Unfortunately this is not just a phase, but a part, of her condition. It will go on until her memory and ability to communicate deteriorate further - if it does. It all depends on what kind of dementia she has (Alzheimer's is a type of dementia). I have managed several dementia units in ALs and nursing homes and have quite a bit of education in this area. There are many good suggestions above such as distracting her with tv programs, music or other activities she enjoys. Distraction is an excellent weapon and the first one I'd choose. Yes, there are medications, but some of them will leave her in a stupor and others may not work well depending on what type of dementia we are dealing with. The staff may or may not have the time, skill, motivation to engage her properly with distractions. You can help in this during your visits. She is not able to change. Its up to YOU to be patient and answer her the best you can - the mistake many make would be trying to reason with her. Her ability to reason is lost and is not coming back. Distraction into something else works best. Does she have a picture album of good times with family to look at. Her long ago memories may still be there. Conversations about the best can work well. Is her room filled with familiar things that will reassure her and perhaps help her feel at home? Pictures from her home, knick knacks - again, stuff she's had awhile. My heart goes out to her as she tries to make sense of her world - and to you as you witness and try to deal with it. The Alzheimer's Assoc can be very helpful also and they have many videos, pamphlets and books.

missmacintx Oct 2014
Honestly, I would begin searching for a memory care unit for your mother. She may not be allowed to remain in Assisted Living once she cannot be managed without skilled level care as Alz symptoms progress.

missmacintx Oct 2014
Honestly, I would begin searching for a memory care unit for your mother. She may not be allowed to remain in Assisted Living once she cannot be managed without skilled level care as Alz symptoms progress.

Butterflyme Oct 2014
My Mom goes through this too! Maybe see if she can take Zyprexa it does help quiet a bit but has some bad side effects also. I just try to reassure her everything is alright, I am not leaving her and lots of hugs and kisses. Tell her about her Dementia/Alzheimer again just be honest and try to reassure her. God bless!

Penny309 Oct 2014
I agree with the others that the things you are describing are "par for the course" as far as many dimentia patients go, but, there might be ways to keep her more comfortable. My Mom had lifelong anxiety which is much worse at this point in her life. She has a psychiatrist that sees her regularly and has tried diffent combos. of meds. Right now she is on Seroquel with Depacoate(which is supposed to help level out mood swings. She is doing pretty well but her nursing home staff and I keep an eye out and note any patterns of behavior which might indicate she needs a change. One thing, though, my Mom is in a NH, so they can keep her safe if any of the meds make her sleepy or unsteady, not sure of the supervision level in an assisted living. I would ask for a psych. to evaluate her and express your concerns. Hope this helps. Prayers.

DaveIFM Oct 2014
the paranoia will get worse till death do you part. In my layman's opinion. Meds may help, maybe ....

slpearson Oct 2014
It sounds like you are doing all the right things and you are just going to have to wait it out. I am positive that her paranoia is not bothering the AL staff because what your mother is going through sounds as "normal" as Alzheimers/Dementia gets. I know the distress is difficult, but redirection and medication (as you are already doing) seemed to be the only thing that worked well with my mother. My Mother always forgot to worry if I got her a Starbucks Latte.

twinlaura Oct 2014
the paranoia will get worse, as well as the anxiety, xanax is a strong benzodiazepam, they have my dad on Ativan and seroquel which helps with anxiety and aggitation. He is in late stage though. Usually it only take 2 weeks for an antidepressant to start working and see some change. soft, soothing music, believe it or not from the 50's helps him a little.....good luck and god bless

Sunnygirl1 Oct 2014
Thank you for your suggestions.

I try to put the tv on some of her favorite light hearted shows when I visit, but lately she doesn't care for the tv. She was a tv fanatic most of her life. She won't look at the screen longer than a few seconds. I bought her a small radio with ear phones, but she lost interest in that too and won't even talk about her favorite music anymore. I do visit the ALF when they have visiting singers and we enjoy that.

I do redirect her and tell her I'll look into all her concerns and get back with her. That seems to work, but she is so distressed when she's on these paranoid phases. I'm sure she is distressing the ALF staff too. I'm not sure how much of that they can tolerate. Any chance that will let up as she progresses further.

I'm not sure what they could give her for anxiety. She was on Xanax and that was a disaster. She fell numerous times and didn't want to get out of bed. The ALF says that drug is problematic for those with dementia. I guess I'll let her new doctor decide. Anything that relaxes her makes her fall down. She has zero balance anyway.

I'm surprised it takes 6-8 weeks for the antidepressant to kick in. The dr. told me 2 weeks. ? Oh well, maybe it hasn't kicked in yet and she will feel better once it does. I appreciate you comment.

pamstegma Oct 2014
An SSRI will improve the depression in 6-8 weeks, but she may also need an anxiolytic. She should be easy to redirect and reassure by simple positive suggestions. Relaxing music helps, so do movies and TV programs with a positive/humorous theme.

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