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Is it common to have hallucinations with Alzheimer's?

94 answers | Last updated: Sep 28, 2014
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A fellow caregiver asked...
My mom, who's 80, insists that she saw a grizzly bear in her suburban backyard yesterday. What's the best way to handle hallucinations?
 

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Why do Alzheimer's patients remember certain things and forget others?

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Hallucinations -- seeing and hearing imaginary things -- aren't uncommon in people diagnosed with Alzheimer's disease and other dementias. They're part of a group of symptoms known as "psychotic symptoms," which also include delusions (false beliefs) and paranoia.

Although your first instinct is to correct your mother, the person with dementia often can't think logically. Attempts to dissuade her from what she believes will often make her agitated and may leave you feeling more upset as well. No one wants to spend valuable time arguing with a loved one with dementia.

The best strategy: Reassure your mom that she's safe and will come to no harm. Distract her with discussions about other things that are pleasant or redirect her to something that's calming or routine. For example, you could acknowledge that it must have been surprising to see the bear, but suggest that now you need to focus on getting ready for dinner and ask her to set the table. If your mother is easily reassured and the hallucinations aren't particularly upsetting, this is usually enough and the incident is forgotten.

Occasionally, hallucinations can be quite disruptive. Certain medications can be used if hallucinations are interfering with a person's quality of life or making it difficult to remain at home safely. These medications, which need to be prescribed by a doctor, do have side effects and aren't always effective, so it's always best to try reassurance and distraction first.

 

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An anonymous caregiver answered...

My husband, an Alzheimer sufferer, saw tiny people on top of a bookcase that came to within a foot of the ceiling. He was convinced they had the ability to just disappear when he walked close. I tried at first to tell him he was just imagining it but after a while I would just go with him and marvel with him that they had disappeared and I didn't get to see them.

 

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Flounders answered...

My father had dementia. There were times when he 'saw' people who were dead from his past. I let him see them and talk with them and joined in with him. He seemed happy to share that moment with me and his 'family'. He, also, relived WWII alot.

 

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guber answered...

I really think the answers are good. I work with alzeheimers and the therapy that works best is "validation' therapy. Entering into their world and allowing them to talk about their delusions and so on. One woman used a flashlight at nite when she had them and when the little men came out she would shine the light on them and they would go away, it gives them a sense of power to overcome this.

 

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dlg answered...

My 97 yr. old Mother has moderate Altzeimer's. She sometimes hallucinates that there's a mother cat w/kittens in her room. She saves food from her meals for them. The staff doesn't handle it very well. I try to go along w/her delusions and tell her the cats have to be fed special food, so her food isn't good for them. Trying to reason w/her that there aren't cats in her room only makes it worse. Only problem is that once she told me we had to take them to the vet b/c they were sick. I agreed that we would if they didn't get better (and then prayed she would forget). Thankfully, she did!

 

Caring.com User - Joyce Simard
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A social worker and geriatric consultant who specializes in dementia care, Joyce Simard is based in Land O' Lakes, Florida, and in Prague. She...
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When people with Alzheimer's disease experience frightening hallucinations, I "fix the problem". Whever it is you take charge and fix it.  I have "killed" snakes, taken rabbits out of their beds and "fixed" whatever the problem is if my "real" answer did not help and they could not be redirected. When they continue and are very troublesome, notify your physician as some medications are helpful for this situation

 

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An anonymous caregiver answered...

several years ago my mom started having hallucinations and paranoia. she thought her neighbor had cameras and microphones all around her property and was spying on her. she smelled strange odors coming from her neighbors house. she thought the neighbor was 'shooting her with lights' through the walls of her house. I knew something was seriously wrong but didn't know exactly what to do about it. she also had serious heart problems, and because this affected her condition I took her to the hospital ER several times, and just went along with her stories. finally, on one of the ER trips, a doctor tested her and diagnosed Alzheimers, and began treating her with medicine. she still has mild syptoms occasionally, but now things are much better. just the knowledge of what it is and how to deal with it makes so much difference.

 

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mad127d@aol.com answered...

Hallucinations are far MORE COMMON in people with Lewy Body Dementia than AD patients. Its easy to say Alzheimers as an 'umbrella' term for dementia when in fact there are over 50 types of dementia. I found The Lewy Body Association website and will be discussing that with the neuro next week.

 

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Lost answered...

Mezack@comcast.net I have been thru the hallucinations and the violent swings with my husband. After being injured, I realized I needed to do something. I took him to his neurologist and we discussed this. There is medicaton, that can help. It is used on a sliding scale basis until the effect is achieved. Today he is not longer speaking to people who are not here, but his violent behavior is also stopped. Keep looking and talking to your doctors, there is help for this. Good luck and God Bless you

 

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Marycat answered...

Anytime my mom starts having real bad hallucinations like talking to dead people, little children, classmates from grammar school it is usually a sign of a urinary tract infection...

 

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mabower answered...

Great responses. It is a really good idea to check the hearing and vision to rule out physical causes.

Also be aware that visual perception problems are part of the Alzheimer's disease process. People may see something but not recognize it and ascribe it as something else. It is common for people to see a change in the color of flooring to be a change in depth, like it's a hole or a stair step.

I had one lady who wouldn't come out of her room because of the 'snake coming through the window' across from her room. The staff was about to start her one a medication for hallucinations, because there was no window in that wall, only a framed painting. The painting was of a lake with a sinewy shoreline. The shoreline was her snake and the frame her window. She was misinterpreting what she saw, not hallucinating. Once we removed the picture the problem went away!

Once you determine that the hallucination is real, determine if it is really a problem. If it causes no harm or distress, that is one thing. However, if it causes the person distress or to do dangerous things, then meds may be in order.

 

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tinad answered...

i think all of these answers are good. but i have a 65 year old aunt. she just had knee surgery. she and i were like mom and daughter. well i cleaned her house every other weekend. she all of a sudden thinks i stole can soda drinks from her. she no longer wants anything to do with me. i promised her i never touched her drinks. she has had mini strokes in the past.she is on depression meds. ahe also had a mother that had same symptoms before passing away.what can i do?

 

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An anonymous caregiver answered...

Also, check out the medications your loved one is on, as a cause of delusions, agitation, etc. My brain injured husband became delusional and uncontrollable when he was secretly hiding his Efixorxr meds. This is one medication that a patient can not stop or reduce without medical supervision. He had to be hospitalized and sedated to complete the weaning process. Another cause of delusions or agitation can be new medications which are introduced too quickly after a previous one has been stopped. Medications can combine to produce unwanted results. As a previous poster wrote, always eliminate physical causes first.

 

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redhatprincess answered...

My husband's hallucinations started small. He would see people on TV even though it wasn't on. We tried everything, experimenting with turning lights on and off, covering windows, etc., but he still saw them. Finally, we just went along with it.

For the last few weeks, he has had a number of episodes. He thought I had told him I was having an affair with a man named Frank. The only Frank that I know is a girlfriend's ex-husband and his name was mentioned in conversation a time or two. He said I stood right in front of him and told him that I had gone to bed with Frank. I reassured him that I loved him and would never cheat on him. He seemed to accept that.

He tends to be more quiet than usual and very withdrawn for a few days leading up to a new revelation. A few days after the "Frank" episode, he told me how troubled he was that our daughter had been sold and gone far away. He didn't know how to reassure her that he loved her. I called our daughter and she talked to him and that seemed to work.

A few days after that, he was very upset that his best friend hates him.

Just this past Saturday, I awoke about 4:30 AM to the sound of voices. I went to check and found my son talking to his Dad. He was very upset about an imagined assignment given to him by his dear friend and mentor (a pastor). He thought he was to go to every person in the USA and around the world that he had ever offended and makes amends. He had pulled out my address lists, even my Red Hats chapter roster, but he can't use the phone and didn't know how to make the calls. He was so worked up because his pastor was pushing hard for him to get the job done. I told him he couldn't call in the middle of the night and he needed to rest. We got him back in bed. I hoped he would forget it by morning but he did not. When he was still upset, I called his friend and asked him to "release" my husband from the assignment. He did and that was that.

Sometimes going along with him works. Other times, I try to reassure and comfort. I don't think there is one pat answer for how to handle hallucinations.

It may be irrational but I have begun to lock my bedroom door when I go to sleep.

 

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zweigx answered...

There may not be anything you can do to change your aunt's perceptions of your having stolen her soda drinks, Tinad, but you may be able to distract her from the subject.

Mainly, do not attempt to reason with your aunt to get her to understand, it will only convince her further that you are not to be trusted. Just tell her that you're sorry she's missing those items.

Perhaps you can ask her how many cans and what flavors are gone, and tell her you will help her look for them, since perhaps they are stored in a place other than their normal place.

Perhaps if you do not locate the cans you can refocus her attention to some activity that interests her, such as: listening to her favorite music while you try to think of where else to look, telling you about her favorite dress or favorite toy or doll as a child or of a place she'd like to visit, etc. She might be willing to draw pictures of her favorite memories if you sit with her and draw your own pictures. Maybe, as you look for the missing items, if you began to sing simple songs which she used to know, she would feel like joining in with you and forget the accusations.

My husband has Alzheimer's and is entering the later stage of it now. He cannot speak words, but he can hum along to familiar tunes when he hears them. He can look through old photos and point to what he recognizes and when I am looking for things that seem to be missing, he can take my hand and show me where he thinks I might locate them. I always tell him, "Thank you. You've been a good help." or something similar even if we are not successful, and he smiles with satisfaction with himself.

I hope you find successful ways to avoid confrontations with your aunt. Each person who has dementia is so different in how they may respond to our attempts to care for them. However, we caregivers learn not to take personal their perceptions of us because we understand their perceptions are not them, but the effects of what a disease process in them is causing.

God bless you.

 

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frena answered...

It's not that useful simply to describe other people's dementia perceptions in psychiatric jargon -- "hallucinations" "delusions" -- without taking into account that they have dementia.

Calling them hallucinations when they are due to the precise injury that dementia brings to interpretation, understanding, ability to process and rationally figure out is not useful or accurate.

People who are genuinely having violent hallucinations, night terrors, paranoid delusions have serious mental illnesses, NOT dementia. It is also possible to have a "dual diagnosis" to have dementia AND a serious mental illness.

I understand that even today families can still feel ashamed of schizophrenia, bipolar and psychotic conditions in their elders, but the right diagnosis is the essence of trying to bring peace and relief to that person and respite to the family.

Seriously mentally ill elders need something different from those with dementia. Many of the intense problems that people write about as "Alzheimer's" are actually problems of mental illness.

As a 20-years caregiver of folks with dementia, and author of five Alzheimer's and dementia caregiving books, I am very dismayed that we are still mixing up two distinctly different conditions. It just prevents people form getting the real help they need.

Don't think that violent acting out, bizarre hallucinations, paranoid imaginings are "normal" dementia. They're not. They're signs you need a better diagnosis for your family member. With that, they might experience peace in their last years instead of distress, terror and trauma.

Don't be shy about pushing on until you get the help needed.

 

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shubug answered...

My husband has been has vascular dementia, he has blockages on the left side of his brain and a venous anigoma on the right side. His confusion has been slowing progressing over the last few months. He dreams that he has been in other states or countries, and wakes up confused as to where he is at. There are times when he thinks his deceased siblings have been here, or we have a upstair bedroom that has several women in it. He also wakes up thinking we are moving and tries to pack and move stuff into the living room to be moved. I do not try to argue with him and just wait until his mind clears. We have stopped him from driving and sinse I do not drive either due to double vision, we have just sold our trunk as he insisted on trying to drive anyway. He has finally excepted that, but still is not a happy camper. He is 90 years old and has had a long full life without much health problems. I have enjoyed reading everyones comments and found some of the answers simular to what I am going through and most quite helpful

 

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Cajeanl answered...

I might add that my 89 year old mom with dementia "feels" things that aren't happening. She said her chair, sofa, bed and even toilet are shaking, and attributes it to her "evil neighbor lady". When she asks me to come feel it, I tell her I don't, but maybe it's her muscles, nerves, whatever. THAT really upsets her.

It's a touchy situation, but lately she's started asking me if I "think" someone is doing it and seems to accept it when I just simply say, " I don't believe so, mom". Whew! She's on Namenda, Aricept, and Seroquel(low doses)and they're helping a LOT.

 

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rime60 answered...

Thanks to "Marycat." Mom's been having "real" conversations and hallucinations seeing me as a little girl. Recent check revealed a urinary tract infection. LOVE THIS SITE!

 

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An anonymous caregiver answered...

Hi I am new to this site and i'm so thankful to have found it!! So many stories are familiar to me.. My mom who is 73 was diagnosed about a year ago with Dementia/Alzhiemers.. She had many "spells",before she was diagnosed.. I agree with the posters who advise getting your loved one tested for UTI..The very same thing happens when my mom gets one.. She is now on oxygen 24/7 for other health problems,but it helps her thinking ,when she wears it as she should. I'm having a real hard time with all this,as i'm sure it isn't easy for anyone... I just feel as if my heart is gonna break in to pieces.. I'm currently on sick leave from my job and i worry what will happen when i have to go back to work & I can't check on her in person everyday... She isn't alone,my dad 75 is with her,but he isn't supportive/understanding or loving,like she needs him to be.. I look frwd to getting to know others who can understand everything i'm feeling and what my poor mom is going through.. Take care

 

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Viola's Girl answered...

My dad was convinced my husband and I were sleeping in the guest room, which was his and my mother's bedroom. Since she died he's been sleeping in a reclining lift chair in the living room. Other times he thinks we've slept upstairs and when I say it wasn't me, he insists it was somebody. He lives alone but he doesn't seem to be scared. I'm glad to know this is common to the disease.

 

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Sharonk answered...

My mom is 92 and in mid/moderate stages of dementia. She was on Aricept but it gave her very vivid dreams and hallucinatins. The doctor immediately took her off it and prescribed Namenda which has calmed down the middle-of-the-night terrors. It does nothing for her other symptoms thoughl. The repetition, forgetting things minutes after I tell her, etc. This is going to be a very long road we are on. I only hope I can keep her at home as long as possible.

 

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rime60 answered...

FYI- your responses were helpful and encouraging. Mom did have a UTI, but she continues to believe she sees my Dad daily(he passed away in 1984). Distracting her is almost impossible, but we try. I am so thrilled to have found this site!

 

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frena answered...

it's very likely that your Mom DOES see the presence of your father. it is extremely common for elders and the dying to see and be visited by those they have loved who have died.

everyone who works at all with the old and dying knows that dead relatives come to visit, as do all hospice nurses. i know it and i dont presume to classify it, certainly NOT as hallucination. why do i need to classify it?

it is sufficient that such experiences comfort the loneliness of old and sick people. that loneliness is made so much worse by people arguing about "the reality" of other people's experiences. so instead of arguing with your mother, why dont you talk about your Dad when she shares her experience with you. Talk about the person she misses so much.

It's very easy to do and much less effort than arguing and upsetting your lonely mother. support and kindness.

Here's a script. When she says she sees him, try "Really? This must be such a comfort to you, Mom. I know you miss him. He was such a great Dad, blah blah blah". Just be kind. Never mind being "right" '

One day, when you're old and dying, your parents will come sit bh your bedside too, probably. Do you want your kids to argue you out of it?

 

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sboland@allanbrosfru answered...

It feels really good to know we are not alone in this. My Aunt is 90, she lives with my hubby and I. Thanks to this site last year, I did find out also about the UTI and how it can cause hallucinations, it took awhile to clear hers up and they got better, but still bothered her in the evenings.
We finally found a med that works great for her, Tazadone, it helps her sleep thru it, she takes it in the evening with her treat and hasn't had hardly any problems since. Two weeks ago we had her in for cataract surgery, this has also helped tremendously :) Last year everything seemed so hopeless, we are so blessed to have her feeling so much better, don't give up, sometimes there is an answer

 

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sboland@allanbrosfru answered...

Frena that is such great advice, for awhile I tried the arguing thing with my aunt, not helpful, only upset both of us, in her mind she is really seeing these things, but her's were scary, so I asked her who her favorite movie star was, and that was Bing Crosby, so we would try and talk about bing alot hoping that he would take over her nightly visions.

 

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frena answered...

that's so great! good for you and Bing! sometimes dementia combined with eye problems makes people misinterpret what they do see, probably according to whether they are frightened people or pretty confident. we don't know. we just have to guess and always always be kind.

 

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lilredhen71 answered...

My husband was on Zoloft for about a year and he was driving me crazy seeing all these giant animals outside. He would tear the house apart looking for a gun (which had already been removed from the house)to kill these animals. Finally a nurse friend of mine told me that Zoloft usually causes hallucinations. I took him off of it and he never seen another animal. He was even seeing his dead mother while on the medicine. It was such a relief for both of us when he stopped doing that.

 

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JS in PC answered...

The same thing was happening with my 90-year-old mother-in-law. She thought she was at work and wondered if they were going to let her go home at 5:00 p.m. She said she had worked all week and they usually let her off at 5:00, and wanted to know if my husband and I could take her home because it was too far to walk. At the time, she was in the hospital (just her second day) being treated for an UTI. After the infection cleared up, she seemed to be more aware of where she was and why, and that the nurses were not her supervisors at work.

 

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rime60 answered...

Thank you to al who have responded to this question, as each has helped me. She still recognizes us and can have a meaningful conversation at 97, but has become so delusional during phone conversations that her great-grandchildren end up crying. I know she wants to hear from them as they live out of state, but the children are very upset. It's a Catch-22 now. I feel they're old enough to try to divert her delusions, but my kids feel their kids get too upset. We're open to suggestions.

 

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sboland@allanbrosfru answered...

maybe you could put her on speaker phone and help her, I have to do that with my Aunt, or I'll grab the other phone, just kind of guide the conversation when she gets confused. Or change the subject if she gets going on something upseting to the kids. I find they are very easily led to other subjects :)

 

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namaste answered...

Frena's response is very helpful to me. My mother moved in with me four months ago after my father passed away. She is diagnosed w/AD and she has been experiencing paranoia - (my daughter and grandson also live with me) and blames my daughter for stealing things that she has misplaced. She also had a psychotic episode the other night. In retrospect, my mother has exhibited delusional thinking pre AD and I am in the process of making an appointment for her to see a neuro psychiatrist. I do believe that she has suffered from undiagnosed mental illness for many years. Thank you Frena for your response.

 

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frena answered...

Bless you, Namaste, for having the courage to take this step that, sadly, many families avoid. i think you will find that, with the help of the right medication, your Mom will be able to find the peace she never could before. and you are modeling for your younger members what we usefully do for the mentally ill. don't worry if you have to try a couple of different meds before the right one. as little as any of us like the idea of psych meds, i have seen people tormented all their lives by their inner turmoil, find peace and freedom from terror for the first time in old age through the right medication. you are bringing healing to your whole family by doing this. may you all find peace and new life together.

 

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Darkay answered...

All very helpful. My 92 yr old husband had UTI and subseequent hallucinations. At first, I outwardly doubted him, but later tried to divert his attention. If it occurs again, I'll have a better understanding.

 

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RAJWATEE answered...

I AM EXPERIENCING THIS DESEASE FOR THE FIRST TIME PERSONALLY THRU MY CHARGE . I AM SO OVERWELMED BY WHAT I AM READING AND ALSO GRATEFUL FOR THE KNOWLEDGE I AM GAINING FROM YOU ALL. I AM TRYING TO GET THE FAMILY TO SEE THAT THEY HAVE TO USE PATIENCE AND LOVE FOR THIS "GENTLE WOMAN" SO AS TO MAKE HER LESS CONFUSE AND STRESSED . SOME PEOPLE HAVE TO GO THROUGH SO MUCH ON TOP OF IGNORANT AND UNWILLING FAMILY MEMBERS . I BEG GOD FOR THE WELL BEING OF THIS GENTLE WOMAN I WORK WITH (PATIENT).

 

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frena answered...

like you, Rajwatee, i've worked with the dearest people whose families seem to have no respect, no understanding and not even any kindness for their parent with dementia. it's very heart-breaking sometimes to watch families acting out their stuff. however, that dear gentle person you speak of was probaby the person who raised them. so she raised those people now acting out against her illness, or indeed against her. when we come into a family to care for an elderly parent, we are very often seeing the results of a long karma in that family. we can't heal the family. we can help the person we care for to come to some peace and emotional healing and that's our job. to perhaps be the first chance of unconditional love this old person has ever experienced. to be someone who can hold them while they weep over long-ago hurts and betrayals. in that way, we often carry the sorrow of a family. but it isn't our own sorrow and we can't let it be. we can only try to live the best love and care as we walk with our old person towards the gates of death. we can model understanding and good communication for the family. some will learn and gradually change, others -- who knows. so, my advice is step close to her and stay calm and loving inside the family and keep yourself emotionally well-protected and healthy. what families do to each other is often painful to watch, but also often their bravery and decency and caring is magnificent. so care for yourself, sleep well, eat well and pray often. we caregivers all do holy work and our job is also to stay peaceful within family chaos.

blessings on you and dont carry their weight of trouble. that part is their job. try to get to a local support group for caregivers. that's where you find those who understand. you're not alone. we're an army out here, we caregivers. we're everywhere. in little towns and big cities, by the ocean, near the mountains, just walking with the old to the gates. we're everywhere.

 

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rime60 answered...

My Mom's delusions are getting more and more vivid. I am now wondering about what SharonK mentioned about Aricept and will discuss this with her doctor. Perhaps this drug is making her delusions worse. In addition, she insists she isn't sleeping at night, so she sleeps all day. SBoland's thoughts about Trazadone may be the answer for both issues. Meanwhile, UTI's continue and rounds of anti-biotics cause other problems. For all of us, we need to keep our eyes on "the prize," which is making our loved ones comfortable and safe through their journey...and to take care of ourselves as well.

 

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sboland@allanbrosfru answered...

Frena my dear you are a wise wise woman, thank-you so much for your answer for Rajwatee, you are an angel, heck we all might be and personally I wouldn't want it any other way :) I just want to make my aunt's last days as happy and full of love as they can be too. rime60 the trazadone was 50mg and she took it nightly with a little treat, lately aunt mary started seeing some visitors in her room again, not too bad, but enough to mess with her sleep. I checked her for UTI and it was time for her yearly physical, so they also checked and it was clear, so her doc recommended going to 1/2 a pill, she said they can also contribute as much as solve the problem, so that is working, yeah ;) Your moms UTI's worry me, that is so much of the cause of delusions, I know I've been very lucky or persistent in my aunt's drinking of cranberry juice, at least 1/2c every other day or more, and try to help her take showers so that doesn't become part of the problem. Also I had taken her to a geriatric psychiatrist and he couldn't stress enough about helping her get her sleeping patterns correct, so she could sleep at night when the shadows etc. cause more delusions. I also really watch her caffine intake whether from drinks or chocolate, those will keep her up at night also, she is a sugar-a-holic too, bless her heart.
I pray you and your sweet mom comforting peace, hang in there, it may take a combination of things to help her. Steph :)

 

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sanity answered...

my mom who is 77 lives with me. she has severe alzheimers and wanders in the night, she breaks things and trashes her room. we just got home from urgent care, she fell last night and has a large lump on her forehead, a black eye and scrapes on her face like rug burns. her balance is off more than usual. she told me and the doctor that kids were chasing her outside and she fell on a rock. of course there were no kids and she cant get out of the house without me. thank god her ct scan came out fine and her x-ray was ok. i dont no what to do to keep her safer at night. she often times tells me her mama is coming and that she will see me "later". im so sad how this disese has affected her. i love my mom.

 

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frena answered...

dear Sanity, bless you for trying but i'd like to suggest something. i've looked after a lot of elders with dementia and, without trying to diagnose, i'd suggest to you that your Mom's behaviors are not rerally consist with "normal" dementia. i seriously encourage you to get a referral to a psychiatrist to have a possibly more accurate diagnosis. it is very possible she has an undiagnosed mental illness -- perhaps borderline schizophrenia or even a bipolar condition. or sometimes, a woman has these kinds of extreme behaviors because of PTSD from childhood abuse. the point of going to a psychiatrist is not just to get a condition name. in elders who genuinely have such conditions, they can really be helped, calmed and soothed by the right medications. they can live in much greater peace and so too can their caregivers. if she doesn't have such conditions, then a psychiatrist can tell you that too and may still have good advice and help for those night-time terrors (which is undoubtedly what she has. the referral is free under Medicare and i suspect you may be very relieved if she is relieved. of the many people i cared for, about five turned out to have such conditions (one of them doing things very much like your Mom), so don't be hesitant to do it. you only have to tell your Mom something like, "We're going to see a doctor who might be able to help you sleep better" (which would not be untrue. your Mom is being "visited" by dead relatives because she is old and ill. these visitations are normal. nearly everyone has them while dying and they often start well before death. are they real actual visits -- who knows? Christians should certainly think so, since this is a good sign of life after death. it may be intense longterm memory recall, again very common to all elders. it might even be wishful thinking. whatever it is, these experiences bring great comfort and peace so you should stop worrying about them. when you're old and ready, they'll bring that same comfort to you. they are NOT a sign of mental illness at all. but your Mom's night-time shenanigans might very well be. best of luck and many blessings on your loving work.

 

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rime60 answered...

Lately I am coming to the conclusion that, like my 73 yr-old brother, my Mom had Lewy Bodies Dementia. She is having problems walking and using her hands and, even without a UTI, she's describing, very vividly, visits from different family members. My once kind of quiet Mom has become chatty Cathy and can go on in great detail for 20-30 minutes. I don't see her withdrawing or being combative as with Alzheimer's. I have no idea how the medical community diagnoses this disease and, at this point, doubt that a diagnoses is even necessary, but it eases my mind just a tad. Can't say why. It just does. A part of me doesn't really want to know if it is LBD, as that would make 2 family members having it and my mind doesn't want to travel far from that thought. It is reaching out like this that helps us all, I believe. We all must remember to take care of ourselves as well.

 

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frena answered...

hey, rime60, nice to hear about your Mom. vivid visits from dead family members is normal for most elders, with OR without dementia. it's a usual thing for the very old. it doesn't need classifying really, since people are very comforted by the visits (and after all, isn't life of the spirit after death a basic Christian tenet of belief, so no problem there!)

the balance and walking thing -- are you aware of NPH (normal pressure hydrocephalus). being found much more commonly now, once thought rare, among those previously thought to have dementia. dementia is not commonly associated with walking issues, but NPH actually signals at first through walking issues, with dementia following (due to the effect of pressure increasing on the brain).

NPH is very helpable. worth getting it checked out, because of that. many good websites on it now.

good luck! i enjoyed your posting.

 

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mpn answered...

I'd like to mention to the lady who's Mom is seeing cats. Some facilities instruct their staff to try to keep their residents oriented in the truth...this creates lots of stress for Alz. patients. Your way of addressing her concern then changing the subject will relieve more stress for both of you. I might suggest if the staff resists doing this you might want to consider relocating your Mom! Best wishes!

 

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frena answered...

i agree BIG-TIME with mpn. that orientation-to-reality policy, which is actually thoroughly out of date now but bullies love to do it, came out of the VA program to deal with temporary hospital dementia (otherwise called "delirium") among newly-admitted veterans.

it was never meant for nor is it effective for those with incruable dementia. in fact, as you so rightly indicate, it is harsh, disturbing and also completely irrelevant for elders with dementia.

it is, as you say, a good guide to picking a place. my findings suggest that a facility which is "reality-oriented" is also more likely to use anti-psychotics on those with dementia which is both medical wrong and useless, plus it kills elders. many emerging studies from USA, Canada, and Europe show this.

glad people are speaking out on all this stuff.

 

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d-bo answered...

I'm not sure if I'm really providing an answer to this as I feel like I really need the same answer and real help.

My father who's 78 years old has the Alzheimer's disease and for the past 4 days I have been in shock about all the behavioral changes he's been having. I'm terrified. He's seeing his mother who I have never met in my life. She died 37 years ago of Alzheimer's disease and I was born 10 years after her death occurred. He's been weeping and every day he's saying that "she was just here this morning, how did she just die so soon just like that?" This has been what he's been saying since yesterday morning and till 5am this morning.

After reading some of the posts here and many people said to go along with the hallucinating person, I tried to go along with him yesterday hoping he would forget by this morning but he didn't. I don't understand how he is able to cry for all these hours and how he's not exhausted or how he's not trying to get some sleep till now. I feel sick myself, and my mother who has diabetes, hypertension, high cholesterol, and a fractured arm is very sick in bed because he's been screaming at her and telling her that she was the reason his mother died.

I want to take him to his neurologist hoping that the neurologist will be able to see him this Monday. My father is grieving like never before and he's having suicidal thoughts. Whatever I say seems to make the problem worse. I am exhausted and I feel depressed. This website is very helpful. I don't know what to do though with this case because he's grieving and asking me to cry and if I don't, he thinks I'm heartless, and he keeps asking me all day to call our relatives for his mother's funeral and he keeps asking me about details about her burial, and whatever I say, he starts weeping and hitting himself so hard it's so out of control. :'(

 

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zweigx answered...

Taking care of a dementia patient, regardless of if you are related to them or not, is so very difficult at times. I suggest that you tell your father's doctor all that you have told us and ask for help for him...that will make your job a little easier once the medications have been adjusted to meet your father's needs.

Also, contact your mother's doctor, explain her situation and ask for help for her.

The main thing to remember as a caregiver is that when a patient makes some of those kinds of hurtful remarks to you, they are not to be taken personal...even though they definitely are directed towards you. The patient is not able to think with the same logical mentality as they could have before the disease started.

Alzheimer's, if that is the sort of dementia your father suffers, damages parts of the brain needed for rational thinking. Gradually, over the progression of the disease greater areas of damage develop, so that you may expect many changes in behavior in your dad as this progresses. His doctor is the proper person to contact at the first sign of any new patterns of behavior that you notice. You need not have a diagnosis name for your dad's new behaviors so much as you need help managing them as they develop.

I would stress to you, that you notify the doctor of any new patterns of behavior as quickly as you are sure they are happening regularly, and notify the doctor as often as you think you need additional help dealing with those behaviors. It may be that the doctor may think you need additional help in the home, and he can order aides to assist you if that is the case. I will give you a well-needed break once in a while.

I pray you find a way to manage the situation so that you can rest better and find peace of mind that you are doing all that is possible... remember that we caretakers do our best and then we leave the rest to God, even God's angels in heaven can do no more.

Hugs

 

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frena answered...

dear d-bo, firstly, please try to understand that seeing the dearly departed is so common among both elders with AND without dementia that you have to accept it as normal. your Dad isn't nuts because he's seeing his long-dead mother. the dead visit their own dearly beloved, especially as the beloveds near their own death. i couldn't classify whether this is emotional longing, or real or imaginary or the dear dead DO visit in their spiritual form. and classifying isn't the need here anyway. just know it happens and that, let's face it, our parents always live within our hearts whether we like it or not. this that he's showing you is very common indeed. it's very possible that if you were to become more on his side in being kind and understanding about his feelings of loss, that he might be less frantic and overwrought. my guess is that he never did really admit and mourn his loss (and maybe his great feelings of guilt) when his mother did die. he's doing it all now. that too is not at all uncommon in elders, with OR without dementia. part of the great soul journey of old age is to be bring to completion unfinished and wounding emotional issues. i may be wrong, but if you could step to his side instead of feeling so frightened and appalled and helpless and avoiding, much might become calmer. so try doing what we do with lonely frightened and grieving children -- we comfort, we listen, we affirm. we don't have to affirm that his mother is alive or that someone's behavior killed her. just to validate his sorrow. take lots of Kleenex, breathe deep and out an arm around him and say, "I'm so sorry, Dad. I'm here with you and I'm so sorry." It probably is, as you're thinking a good idea for him to see a psychiatrist at this point and possibly a neurologist. Neurologists deal with brain mechanics, psychiatrists with brain thinking -- they do quite different jobs and you may need both for your Dad. But meanwhile, don't stand back from your Dad and try not to be frightened of his intensity of grief. i'm sure he's held it inside for what must seem like forever. if you can stand beside him and support him, not in his ideas but in his grief, if you can help him carry it just by being there and listening and accepting him, he might do a lot better and so might you. there is nothing more unifying between people than walking through the dark passages of life together and being honest and real. right now, your Dad needs a Dad -- and i guess that's you. that's not at all weird. that's the circle of life. try some of this just in case it will work. you see, i've seen this work. i've seen old people weeping for their Mom or their Dad and when we, as caregivers, act like a loving caring parent, it often meets their deep need for someone to be there in their loss and loneliness.

 

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d-bo answered...

Thank you Frena, this really helps. I am supportive though, and I'm trying everything to make him feel less miserable. I did do more of the comforting and being fully there for him just now. He seems to feel a lot better, although he's still crying and blaming so many of our relatives for not being there for him today to support and show him love and care. I love this website..I feel so much better myself because I know someone out there in the world knows exactly how I feel and how my father feels. Thank you very much!

 

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frena answered...

plus, d-bo, don't wear yourself out trying to make him feel better. we can't really "make" people feel better (like those awfdul people at funerals who come up and say, "Well, he's in a better place now," as if that would brush sorrow away.) just maybe sit with him in his sorrow. simply having a witness, an accepting companion on his journey may turn out to be enough. he actually needs to do the grieving. that's the process which leads us back into living our lives again, instead of freezing within for decades. but it's walking beside that we do. we can't do people's journeys for them but we can be with them in the dark. lower your expectations, my dear, and you won't wear out quite so much. he's lucky to have you, but care for yourself too.

 

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Stormin' Norman UK answered...

My hallucinations are really wierd and disturbing. I have Lewy Body Dementia, diagnosed about 5 years ago, and hear voices as well. I never have complete peace as there are scraps of jumbled up words, parts of sentences, different voices and no subject. My hallucinations are very similar, I don't see actual objects or beings, I am constantly bombarded with flying objects, colours, flashing lights, again with no theme! I cannot answer why these things happen, but can confirm their existance. I also have contant Tinnitus, so whether there is a connection, I don't know. My consultant's have not a diffinative answer, apart from not being able to treat it. I would be interested to hear from anyone who experiences these symptoms.

 

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bjkth1956 answered...

At the first of this year my mom (who resides in a nursing home now) started "seeing" her mom (RIP 1969) then my dad (RIP 2003). At first I tried to orient her to reality, even writing down and putting in her drawer a note with dates of birth and dates of death, taking her to the cemetery on one of our "outings". Through this site I have learned that my behavior #1) did no good because she didn't remember anyway and #2) it just confused & agitated her more. So now I just comment on her comment like "I don't remember daddy being a singing person" or "Well, you know how daddy was". She seems to feel better, validated, and happier with me and within herself. I love her so much and its going to literally destroy the person I am when I don't have her anymore. The little girl inside me is so scared because as hard as I am trying....I am not going t be ready.

 

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An anonymous caregiver answered...

My 85 year old mom thought that the cable installer brought his dog into the house. He had brought his son. He was about 13. She was so confused and frustrated when I told her he brought his son to help him and that our dog was the only one in the house. She is very nervous when someone she does not know comes in house so perhapsnher anxiety made her think the young man was a dog. This was a first for us.

 

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An anonymous caregiver answered...

I need some help. For months my 86 year old mother has been seeing her sister & 7 or 8 children in her room. Sometimes she will wake me up at night and say someone is trying to break into her room. She has a door in her room that opens to the outside. We live in a rurel area & it is not uncommon for drifters to come to our farm looking for work. The first time she said someone was trying to break in. It was 2am, my husband was recovering from a 4 way heart bypass & I jumped up ran to her room with phone in hand calling the sheriff's dept. There was no one there. I was just greatful no one was there assured her she was safe & went back to bed. She talked about the excitement for days. later she started talking about her sister & the brood of kids in her room. For months I have been running out the unwanted people in her room. I took her to the doctor, he recomended I take her to a neurologist & they sent her to a phsycologist, in the meantime I found her room torn up this past monday. Her lift chair recliner was upside down. Bed pulled from the wall ( only a couple of inches) her phone, clock, etc. was all pulled out. Her jewlery boxed was ransacked. Everything was a mess. She said her sister & the kids did it. She wanted me to crawl under her bed to plug everything back in & get the kids out. The week before her hot water heater started to leak it flooded her room. She never said anything as the water started into the main house I traced to water to her room, she said the kids turned the water on. We worked all weekend removing carpet & drying floors. This past friday I took her to neurologist for a follow up. My mom told the doctor she no longer wanted me in the room when she talks to the doctor. The doctor told me she could not talk to me privately either about my mom's condition unless my mom said it was ok. The doctor said I could take her to a mental health facility. When my mom herd that I was willing to take her to mental health for obserivation my mom said my husband and I could come in the room. She then denied any of the hallucinations said we were lying. Said from timt to time she thinks she see things but knows that they are not really there & figured that just goes with old age. She said her room was never torn up and we just want to get rid of her. The doctor said mentally she is healthy, there is no alzheimers she is smart, sharp, & to quit picking on her. I am sick I really thought my mom was losing tough with reality. I thought I was not doing enough to save her mind. Now I do not know what to think & the doctor thinks we are being mean to her. i have taken care of her for 18 years. I have loved her, sheltered her, fed her, taken her to the beauth shop, Church, anywhere she needed to go. I feel sick over how we were treated. On our way home my mom said that will teach you not to try to prove I am crazy. I don't know who she is anymore. I need help. I know there is something wrong. This is not my mother.

 

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frena answered...

you could usefully take your mother to see a psychiatrist. neurologists don't deal with the thoughts people have, they deal with the physical brain. i'm sure that a good psychiatrist would indeed be able to figure your Mom out if, as you think, her mental health is an issue. it's not clear to me from what you say that she had an actual physical check-up with brain scan, mri and so on, to ascertain she has no brain tumor or other discernible factor. so i'd suggest all the following: -- physical check-up with mri, brain scan and so on, to eliminate physical cause for her issues; -- psychiatrist's visit to ascertain whether she actually has a mental illness (and you might give this some thought also, since most elders who present serious mental health issues have actually had them lifelong and usually family members have had some suspicions about this e.g. ask yourself if your mom has always been a bit paranoid, whihc could indicate lifelong schizophrenia; -- seeing dead people is normal for elders moving towards death and it's not psychiatric; -- breaking up the room is not normal, not even for dementia, so something really is going on with your Mom and you do need to get her help; -- consider medications -- did she have a change of medication before all this started up -- some meds are very destructive to the normal mental well-being of some elders and she could be having an extended allergic reaction which affects her mental health -- not so unusual in elders, alas; -- overall health checkup for her -- including liver tox test, oxygen test and so on, because these things out of whack make people look crazy; -- i suggest you get a medical power of attorney form ready for when your Mom is feeling agreeable and see if you can get her to sign it, which would allow you to be present and to talk with the doctor.

-- as hard as it is, be very calm and not confrontational with your Mom right now, because that will give her confidence in you and get her to agree you should be in the doctor's office with her -- which is pretty normal for family and elders;

-- otherwise. you could go to court for a competency hearing, which no-one really likes to do, but sometimes it's unavoidable.

-- next time a doctor offers you to have your Mom admitted for a psych evaluation, grab the opportunity. it's not a threat or a punishment, it's a gateway to real help for all of you. don't back down because Mom "promises" to behave. You're right, your Mom has serious problems right now and she really does need your help, but you really need to know what the cause of all this is.

-- and maybe consider having your Mom move into care somewhere, perhaps a mental health care home, because you can't all go on this way. you need a sane life, she needs help. the degree of violence in her behaviors signals that she is in a serious health crisis. get a small camcorder and record some of this, then you have your evidence. or call 911 when she's acting out violently and then too, you'll have your evidence and she'll have her psych eval.

dont keep backing down. you need the help, and she needs the help too. it's not her fault, i'm sure, but you all need expert intervention here. please do it for all your sakes. blessings on you all.

 

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An anonymous caregiver answered...

When my mother in law has these during the day we know something is wrong medically whether it is sugar levels or other. At night we know she hears things and translates them as something different. This we found was good for our relationship as husband and wife, but we just go with her illusions as it is the lesser eveil than arguing with her. The day time ones we try to seek medical treatments, but the doctors are now trying to harm her so we don't force the issue. We do call her doctor every time. She just went in last week for her flu shot and her doctor gave her the 6th degree. It has been over 18months since she last seen her doctor's face. It is not easy dealing with the illusions as you don't see or hear what they do, but going along with them from what they are saying helps keep the peace. Just the other day my husband went outside and shot a bb gun in the ground because a lion was out there. All the neighbors and police know we had to deal with another illusion of hers. We are greatful they all understand why we are out at 1am shooting a bb gun. Thankfully too ma heard it and soon went back to sleep. The neighbors called the next morning to ask what we had this time. The all think it's sad but totally understand and support our efforts to keep ma as comfortable and calm as possible. Even when she let's the dogs out the front door because the mail ran (usually not). I suggest you talk to every neighbor when the illusions start going outside, to work out something that keeps the neighbors calm too. We told all ours we would only use a bb gun and never shoot it at anything but the shed ground. Thankfully she doesn't ask to see proof the animal is died. You may need to also ask the neighbors to help when they go chasing things down the road too. Many get lost and wander to far, and get lost. This again is where your neighbors can help by either guiding them home or calling you immediately.

 

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sboland@allanbrosfru answered...

Hi, Please don't forget to have her checked for a Urinary Tract Infection. Guarranteed to cause hallucinations with my aunt who is 91 and lives with my hubby and I. She recently developed another UTI and saw terrifying people and images in her room, after antibiotics it got better, but it takes time. Her doctor gave her a mild antibiotic to keep them away and also Haladol for when she has hallucinations, from the first night she took it, she has been sleeping great and is better than ever. Hang in there :) Stephanie

 

genessa1601 answered...

My Mother recently had surgery and the doctor let her go home in the evening...boy was that a disaster. She had terrible sundowners, kept telling me someone had murdered her daughter (me), it was a long night for us. In the morning she was a lot more clear and of course didn't remember anything about it.

 

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JS in PC answered...

My husband has a cell phone but doesn't always remember to carry it, or forgets to charge it. I went online to Medic Alert and ordered a bracelet which my husband cannot remove by himself. It has the toll-free number for Medic Alert. Emergency personnel are trained to look for these bracelets. His has engraved on the back his main medical problems (heart disease, impaired memory, hypertension), his first name and his assigned number. After the bracelet came, I was able to go online to Medic Alert and enter his medical history, a list of my husband's doctors, and a list of the medications my husband is taking. They also have my name and phone number for emergency contact. As an added feature, in cooperation with the Alzheimer's Association, if my husband should wander away and I am unable to find him, I can call Medic Alert and they will contact AA. AA will contact local law enforcement to put out an alert, similar to an Amber Alert for children. If someone finds him, they can call the toll-free number on the bracelet and Medic Alert will notify me. The stainless steel bracelet is very inexpensive, and the monitoring/alert service is about $40 per year. It gives me a little peace of mind, and I think it is well worth the cost.

 

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rita8533 answered...

My 84 year old mother who has severe arthritis and well controlled Parkinsons had a mild heartattack last year. After a few days in the hospital (during which she was mentally alert and behaving normally), she entered a nursing home for a few weeks of rehab. After a few days there she became paranoid, confused, didn't know me sometimes, cried a lot, was aggatated, lost memory and had awful hallucinations. She became a different person. I told the staff that her behavior was Not at all normal for her but was told it probably was a result of the heart attack and sudden onset of dementia or change in environment. I refused to accept that explanation. I was there every day and became more upset and more determined to bring her out of her sudden decline. Finally, after a few weeks I called a geriatric psychiatrist to see her. It only took him a few minutes to observe her and read her chart to say he was almost certain the problem was caused by the regular doses of ATIVAN the nursing home was giving her to keep her calm. He ordered them to slowly tapper her off of the Ativan, and Praise God she was back totally to her old self within two weeks!! The staff was amazed in the difference in her and finally believed me that her behavior had not been her "normal". Ativan can be very bad for some elderly people. Please check to see if it or some other medication could be affecting your loved one. It makes me sick to think what would have become of my mom if she hadn't gotten off Ativan. She would still be in a nursing home and out of her mind. She is very greatful to be back to normal although she remembers very little of her behavior which she refers to as "when I was out of my mind". Believe me, it is very important for family members to be diligent and pro-active in the care of their loved ones.Don't just accept everything you are told. If we don't look out for them, who will? I sincerely hope this info helps someone. God bless all the caregivers!! It is not an easy job.

 

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Cajeanl answered...

Along the lines of med's side effects; my mom had been on Aricept, Namenda (2x/day), Thyroid, and Seroquel. She had a sudden and striking decline for no apparent reason about six weeks ago. We were beside ourselves trying to help keep her calm, because she was sleepless and talking to herself constantly; also aggressive and trying (sometimes succeeding) to get out of the house. Plus she lost five lbs in a week!

To make a long & scary story short; we got her into a gerontologist who completely stopped the Aricept, cut the Namenda to 1x/day in AM. After seeing recent blood lab results, he also stopped her thyroid med. We're already seeing a huge change and it's only been one week. I know more good will come when the rest is out of her system, might take a month. I know the disease isn't gone, but thank the Lord for this kind and wise doctor, who has helped mom so much, and us too!

 

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LucyinNJ answered...

My 92 yr old mom has some dementia and sees people and hear things. She is afraid and wants me to call the police each time. I try to reassure her she's safe but many times its to no avail. Obviously I can't reason with her for she forgets what I say within minutes. Its just her and I and I work and I have someone with her a few hours a day. I do the best I can, but not sure its enough. I just want her to be safe and not afraid. She has a history a UTI so I will check that first. I would of never have known to do that. I find this site very helpful. How do you know when you can't care for someone anymore?

 

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trojan answered...

These responses point out the great need for an Alzheimer's cure. My husband had hallucinations -- there were women in our bedroom. He didn't know me, and would call our sons in the middle of the night saying there was a strange woman in his bed. Cure -- unplug the phone at 9:00 pm each night. He did 'see' his deceased mother and sisters the day before he entered the hospital for the last time. It was a comfort to him. I too learned not to argue with him. Wish I would have known to play his favorite old LPs for him.

 

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An anonymous caregiver answered...

My mom had dementia associated with old age and she also suffered several mini strokes. She used to watch the weather channel all the time. Since we live in hurricane country, weather was of some consternation to her. She woke me up in the middle of the night once screeming that we needed to get the boys (my brothers of whom the oldest is 78) over to cover the pipes, and weatherize the house because there was a snow storm that would hit before morning. We live in Baton Rouge, LA. I heard the TV announcer talking about a snow storm in Colorado. I told her, "Mother, that is in Colorado. We are over a thousand miles from Colorado. It does not snow in Louisiana very often and never in October. We are okay." She became so beligerent and combative that I finally said, "Okay, look Mom. I'm calling. I called my home phone number and pretended that I was talking to my brother. I finally told her that he said he would be over first thing in the morning after he weatherized his truck. She was fine and I gave her half of a sleeping pill her doctor prescribed and she slept the rest of the night, but she used to insist that we had night time visitors--Chef John Folse, Chef Paul Pruddhome, Rachel Ray and they were teaching her how to make different recipes. I had my brothers fix up the kitchen so that she could not use the stove or oven without knowing how to turn on the gas outside, because once or twice she tried to bake or cook. It was much easier to go with her hallucinations than it was to fight her. She also developed quite the potty mouth--this was an elderly Southern Lady who never used profanity in her life before, but she sure learned to use it, and I am talking real, profanity that one would expect to hear on a dock somewhere. I didn't know my little Mother knew such words! I said "damn" one time when I was around 30 yrs. old and I thought she was going to try to wash my mouth with soap. My (grown) children still chuckle at "Granny's lapses" as they called them.

 

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sboland@allanbrosfru answered...

Hi, Since her lapses sound like they come and go, try checking for a urinary tract infection. My 92 year old aunt that lives with us, has hallucinations when she has a UTI. They even have test kits you can buy at Wal-Mart or other stores. At least she is cooking with famous chefs :) My aunt always has frightening hulllucinations, people in her room stealing her stuff, so she's jump up to bat them with her cane and she falls, we just got over a good one, had to take her to the ER to see if she broke anything, they gave her IV fluids and a good shot of antibiotics and she was better in a couple days. Hope this helps, love this place :) Stephanie

 

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DebD1125 answered...

My mother died in 2007 of lewy body disease. She was first diagnosed with Alzheimer's but web we told hospital neurologist age was hallucinating he re diagnosed her. He say people with Alzheimer's don't hallucinate. Nobody hears of lewy body disease. It is a dementia

 

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An anonymous caregiver answered...

My Mom started seeing fireworks, sparks and flashes of light. She would drink "Ensure" daily...we stopped the "Ensure" and she has not hallucinated in a year and a half (since she stopped drinking Ensure).

 

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DebD1125 answered...

My mother with lewy body disease Would see fire in the corner of the ceiling in her room. One of the Many hallucinations she had. I reiterate if your loved one is hallucinating please consider lewy body disease

 

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a grieving caregiver answered...

I am glad that some of the responders are mentioning Lewy body disease. There are important differences between LBD and AD. Hallucinations are one of the main symptoms of LBD - always visual, never speak or make noise. Also a history of REM sleep disorder. The most important distinction is that certain traditional antipsychotics routinely given to AD patients to reduce agitation can be very harmful, and occasionally fatal, to those with LBD. My husband 's hallucinations, formerly almost constant but always benign, are much less frequent than they used to be. He is on Namenda and Galantamine. The latter has had a remarkable benefit on his cognition. Unfortunately, he has begun to fall fairly often and his mobility is the more urgent issue at this time. If hallucinations are a primary symptom, by all means go to the Lewy Body website where you will find helpful articles.

 

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DebD1125 answered...

Previous response right on the money. They believed my mom ha alz until she was in hospital due to tia. When neurologist came in and I said she was hallucinating, he changed her diagnosis to LBD. And yes, giving a LBD patient drugs they use for other dementia's can be detrimental. Also , I see someone Mentioned Parkinson's also? That is also associated with LBD

 

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An anonymous caregiver answered...

What part of the country do you live in? What if she actually did see a bear? I live in Maine and large and small animals have been known to make appearances in unlikely places. We have had deer and moose stroll through cities before. There sometimes pictures in the local newspaper supporting this. A couple of years ago, a baby bobcat strolled into an automotive supply store in Sanford, Maine, for example. Just saying;

 

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lindsey50 answered...

Google and research "Charles Bonnet Syndrome," (CSB) before assigning hullucinations to Alzheimer's. It is common in elderly people who have vision problems due to blindness, glaucoma, macular degeneration etc. Usually the sufferer will know the hullucinations are not real, but they might not tell anyone for fear they are loosing their mind, or fear of having Alzheimer's. It may be seeing simple patterns of straight lines to detailed pictures of people, or buildings. Many see "little people" fairy like creatures, people like British WWI soldiers in his house (my father saw this) or animals, like the kittens in the room, a dog in a chair etc. Clues to CBS is that it is a "visual" hullucination only - if u see people, they will not talk, animals etc. will not makes sounds. Some people will see patterns or something like flowers on the wall, cows in a field that are not there, a gate or wall when walking through the kitchen, etc. The hullucinations may last minutes up to hours, to all day. Once a person is told that it is merely a problem with their eyes, they will be relieved. It may last a few weeks up to about 18 months, while it persists with some patients for up to six years. The hulllucinations are not fearful - they will be non-threatening. One lady saw a Royal Canadian Mounted Policeman in uniform in her bedroom. When she received a diagnosis of CBS, and the hullucination eventually stopped, she said, "I missed him. He was handsome." It is common for the hullusinations to happen when the person is sitting quietly alone, or at bedtime. There is so much to tell, but I'll let you look it up. I am desperate to contact the person above, whose husband saw "little people" on the bookshelf. This is classic Charles Bonnet Syndrome.

 

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anonymous@unknown answered...

Not so much an answer as merely adding my experiences. My uncle has dementia and is now in a home.This came about very suddenly, as he declined very rapidly.

Back in WW2 he was a batman (British military jargon for a personal servant) to a colonel. However, he now seems to believe that he himself was a general in the war, and that his flat cap that he has always worn is a military peaked cap.

 

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An anonymous caregiver answered...

I found out very suddenly from a doctor's nurse, who blurted to me over the phone that my mother had dementia.

She lived in Florida and I live in California with my husband. When we spoke on the phone, she seemed fairly normal, so I really couldn't tell that anything was going on. I visited her and my dad every year since moving to California.

When my father died in December of 2009, I was with her for three months to make sure she was ok. After I got the phone call from the doctor's nurse the following year, I immediately flew to Florida to be with her. She greeted me with a violent hallucination that there were two men in her condo waiting to kill her.

She continued to have hallucinations about people she saw on the TV, suspecting that people were stealing from her, and acting very paranoid.

A friend of mine, who went through this for 10 years with her mother, recommended that her doctor prescribe Respiradone. After about a week, the night terrors stopped as did her violent behavior.

I brought her to California at the end of my last visit to Florida. She lives near me in a Board and Care residence. They have the medical knowledge to properly take care of her, and she's only about 15 or 20 minutes drive so it's easy to visit her.

She still has some hallucinations, but not the violent ones that no one can manage. She also seems much calmer than before. I would recommend to anyone caring for a person with dementia who suffers from hallucinations, to ask their physician if this drug might be helpful.

 

dailyrx answered...

Here are some symptoms of Alzheimer's from http://www.dailyrx.com/conditions/alzheimers-disease/encyclopedia?symptoms.

Hallucinations are not among them, but you should still consult your doctor.

-asking the same questions over and over -forgetting the names of common things, such as a desk, house, or apple -wandering away from home -finding it hard to remember things -losing things or putting them in odd places -forgetting how to brush your teeth or comb your hair -having trouble paying bills or solving simple math problems getting lost -being confused about time, people, or places

 

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Leen answered...

Just wanted to say that looking into whether the person who is hallucinating has a UTI is right on the money. It's the first thing we check for with our Mom.

Doesn't eliminate the confusion and hallucinations entirely, but it definitely diminishes them.

 

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An anonymous caregiver answered...

Re: seeing a grizzly bear!

Also be aware that if the person actually realizes that they are seeing things that are not really there they may have CHARLES BONNET SYNDROME which is well documented to occur quite often with vision problems and aging eyes and not at all the same as losing touch with reality, or related to paranoia.

My 94 year old dad who coincidentally also now has some trouble saying the words he wants but can still follow the politics and financial information, knew that the things he was seeing were not really there (ants on the table -- he reached out and felt for them even knowing they would not be there), a truck in their back yard he knew was not really there, etc.) and thankfully he trusted his wife to tell her what was happening and she thought to ask his retinal specialist about it rather than just assume he was losing it. Sure enough the eye doctor told us about this condition is not at all unusual, and is not psychological but physical. It is called CHARLES BONNET SYNDROME after the doctor who first documented it long ago. The person is actually seeing the things he knows are not really there. And it goes along with reduced vision (he has glaucoma and macular degeneration), You can google it and will see how common it can be in situations like macular degeneration or other aging eye situations. (I tend to think of it as sort of like "phantom limb" where people who have had something amputated still feel like it is there. Only in this case I think maybe their vision might make up a few extra things to compensate for the variety they no longer can see. But that is just how I think of it.) Dad is well oriented to reality even though he cannot remember the words and so he knows when he is seeing things that he is not supposed to be seeing.

I hope more people learn about this specific medical situation because it must be very scarey for some people to be afraid to tell anyone what they are actually seeing for fear they will be thought to be hallucination/psychotic or whatever. ..or even just to be disbelieved that they are even seeing it when they actually are! Once he sheepishly reported that he had seen some "little people in the road" which he knew was odd, but when I read about it that is actually an image that some other people have reported with the condition. (It seems that most things look normal but there is also something extra that should not be there.) And if you don't believe me, or if your loved one is experiencing it do consider this possibility and look up Charles Bonnet Syndrome.

Also, if you have the chance, please pass the word. I hate to think that some people may be medicated and labeled for what is really a different situation. I hope more people will become aware that it can be a factor for some older folks. Please keep it in mind in case you run across it (even as I realize most of you are dealing with so much more than that, God Bless You!)

 

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An anonymous caregiver answered...

Side effects of commonly prescribed medications can sometimes turn into side effects of the disease. My Father took some medication in the later stages of Alzheimer's for restless leg syndrome that caused him to have hallucinations.

 

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DotingGranddaughter answered...

Shortly before my Nan was diagnosed with Alzheimer's she experienced extreme paranoia and auditory hallucinations. I didn't know how to cope and by the end of a very sleepless night, I had convinced myself that the cooker/sink/taps/television were speaking to my Nan and I'd gone round the bend because I couldn't hear them!!! On the same day as her diagnosis, my Nan was also found to have had an almost complete psychotic break, blocked ears and a UTI. The months of fighting her confusion had put her mental health into a tailspin. In reality and with hindsight the signs were a lot clearer going back at least 5 years; forgetting the day and date so writing it down (and then forgetting when she'd written it) accusing me of stealing from her and imagining conversations we'd had. I guess we just didn't want to see what was really going on. I can honestly say that if I were in the same situation again, I still wouldn't know what to do with any degree of certainty but these answers have been a big help. My Nan hasn't had another 'break' for 5 years or so now but if she does, it's nice to know there are people on here who have advice to give. Thanks and God Bless you all and your loved ones.

 

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sboland@allanbrosfru answered...

hi dotinggrandaughter, My aunt lives with my husband and I and the only time she halucinates is when she has a UTI. Over the years I've learned to make sure she showers, uses daily wipes, just not toilet paper, takes cranberry pills daily and has a glass of cranberry juice with her dinner. Also noticed when she has a really bad headache it is usually the start of a UTI and I check her urine with AZO UTI strips and 99% of the time she has a UTI, so I get her antibiotics and it goes away within a week. I used to drive myself crazy dealing with her hallucinations and lack of sleep pattern which will intensify everything, because she would sleep all day and stay up all night and see some crazy stuff. Take care :)

 

rlnz4133 answered...

I just discovered this site. Thanks to all who post and share their experience on this site. It is incredibly helpful. My mom is 80 and lives in assisted living. I don't live far so I visit her often. She's been agitated after sundown. I spoke to the psych who is testing her Urine for UTI and other blood tests. He also increased added Trazadone at dinner time. I hope this helps her. She's become agitated and thinks she lives in her room alone when she in fact has a room mate. The RM is a lovely and patient woman who plays alone with mom. She doesn't speak of the reality but instead goes along with her. I have been so stressed lately as she was in the hospital for a very strange and angry rash. And then came the agitation at night. The dementia seems to be getter worst, she may be in the moderate stages now.

 

kjgsail answered...

My Mom is 88 and has been diagnosed with alzheimer's. I have been her 24/7 caregiver for four years at which time I moved in with her. She has hallucinations but they are normally attributed to her having a UTI. After reading about Lewy's and Charles Bonnet there is no way she has either of those. I do want to thank SBoland for mentioning AZO UTI strips. They will help immensely - seniors get UTIs so easily and especially if they are incontinent. I also want to thank frena for all of her advice. It has been very helpful. One day is good and the next three may be just days. I'm beginning to really appreciate the good ones. I have also learned this past year to take advantage of daycare respite and to have structure in her days. She has been attending a daycare program two days a week and two other days we have regular 'out of the house' activities we do. It leaves Fri, Sat and Sun for visits to friends, parties, and just resting. I have found the activities to help in keeping her going. As both her internist and cardiologist have told me for years, 'get her out and keep her active'. It has helped even though it can be very tiring to me. This is my retirement which I thought would be much different but for now I guess this is what I am supposed to be doing. Thanks for the comments you all are making and the questions as it helps me to continue on with this daily activity and know that I am not alone. ;-)

 

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sierramax answered...

My grandmother, father and uncle passed from Alzheimer's. Toward the end of 'Granny's' life, although she looked the same, her mind: soul / spirit / love - was gone. It can be hard to look at someone you love and they're completely different, never knowing if they'll get angry or be kind. She didn't know who any of us were. When I visited her in a care facility by myself, it was like stepping into the Twilight Zone. Dead people. She was terrified, screaming and pointing to them at the end of her bed, grabbing my arm to save her. Her visitations were not pleasant at all - she was terrified. Eventually she calmed and in my panic, ran to the caregivers and told them she saw dead people that terrified her. The response from them: "she always does that." I visited with her - in a calm, 'go with the flow' way for a couple hours, went home and immediately called my dad. In a very sad voice he said the same thing the caregivers did. His Alzheimer's was beginning and he was witnessing what he would soon be going through. I truly feel there were people there that only she could see. Relatives - she named them - but was scared of all of them. She passed in a couple weeks, then my dad's symptoms got worse. His journey was completely different than his mother's. He never saw dead people, but within time, NOTHING made sense to him. He destroyed things, thinking he was fixing them. He became very innocent and sweet, yet very unpredictable. My mother (a nurse) wouldn't put him on meds (she's a good nurse, but has seen such a dark side of drugs, she felt they would give him addictive meds and she didn't want him to be a drug addict). That was her bizarre logic, and since he was destroying much of their house (fixing it in his mind), she put him in a "home" where they put him on a combination of meds that really helped him. He eventually passed peacefully, and had the innocence and personality of a very sweet 5-year old child. My Grandmother's journey was rough - the dead people terrified her (I swear I could 'feel' them somehow) - she was miserable, in great pain (broken hip her doc / caregivers didn't treat because she was "crazy"), as a result she could be very rough to be with. But I just "let her take the lead" and no matter how 'beyond strange' her world was now, I was calm and gentle with her. Again, she was an Angle one minute, the devil the next - I never knew what would set her off. When my dad's symptoms eventually became severe, he never saw dead people, and was always very sweet and everyone (caregivers and fellow patients) liked him. Similar to 'Granny' - NOTHING made sense to him. With my Uncle (from mom's side), he too became very innocent - like a very young child. Each journey is different. They all have passed and I choose to remember the best of them. I recently completed intense training to be a volunteer for Hospice. I always expected to be with end of life patients - I'm a great listener. Much of the training from Hospice was about Alzheimer's and dementia patients. Not many of us wanted to work with them - most were leaning to end of life patients (cancer, AIDS, heart disease, etc.). But after reading all these posts, seeing how brave you all are, you've inspired me to help not only the patients, but also their caregivers - they too are exhausted, frazzled and need a break to get away for awhile to be part of the familiar flow of life. You all have courage, strength and incredible Love and Compassion. The unconditional Love you have will touch other people. And in their eyes, you will be among the few that truly shine! God Bless you all....

 

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An anonymous caregiver answered...

My mother used to have hallucinations all the time, they stopped when we took her off Aricept. The doctors all tell you it is part of the disease and it can be but it also can be caused by medications.

 

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An anonymous caregiver answered...

This site is a blessing for all of us who care for dementia patients. My husband is 88 and had shown some signs of dementia many years ago, but was such a bright man he could convince the doctors that there was a logical explanation for anything I had alerted them to. They would do the memory test and he would get enough right and then joke about anything he was having trouble with. Later, when he was hospitalized for a fall, when he had a seizure, everything became clear to the doctors and the neurologist ordered the tests he really needed and the treatments were begun. My concern was not to label him as having dementia, but getting the care that could prevent further loss of his mental abilities. Now, it is 3 years later and he has had episodes of the Lewy Body Dementia with all the classic symptoms. As I read what you are all experiencing, I recognize the same stories. He hallucinated during his hospitalization, seeing dead relatives, and animals, and other objects. The medications were an issue eventually, since some doctors prescribed the psychotic drugs which made things worse. After months of my caring for him, when he was falling and I could not take care of that, the doctors prescribed skilled nursing homes and we went through the overdosing of the medicines that he was not supposed to have. We had him in a facility that kept him in a wheel chair, drugged and he would fall out of the chair periodically. They would report to me that he was trying to climb up the walls. So they would drug him more, and he would get worse. When we finally found a nursing facility that got him off the drugs, he was much better. No hallucinations, cooperative, walking with a walker; everyone there was friendly and cared for him well. His confusion remained and he thought he was at work, so we brought his brief case in to him and set up a little desk area in his room. This worked although he sometimes complained that the office girls would not get his phone calls made!
Seven months ago, we took him home and moved to another state where the weather was better and we were closer to more of our family. He has been much better and knows most of the time where he is. He likes to watch the weather channels a great deal and does want us to prepare for the weather in the East while we live in the West.
Here are the gems that I have accumulated during our journey through this disease: Most of the time the urinary tract infections go hand in hand with the worsening of the dementia. Also when I cannot get him to drink enough water, there is more likelihood of the infection developing. The medications can be real culprits. They neurologist warned against holdane (spelling?), and Serequel has been listed on many medical websites as one not to use with dementia patients. Surgeries requiring general anesthesia are now recognized as contributing to development of dementia in the elderly. Also, some of the anti-depressants can created problems.On the plus side, I use vitamin B-12 to help his memory, multi-vitamins, calcium, and vitamin D. All seem to be keeping the dementia symptoms from getting worse. I notice when family visits, he seems even better. He is still shuffling and a little unsteady walking, but has exercises to do to strengthen his leg muscles and I try to get him out whenever I can. This week, we will be trying to get him to church again. He is looking forward to that.
Thank you all for sharing your hints and concerns. It is easier traveling this road with friends who know the way.

 

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An anonymous caregiver answered...

Oh, I also wanted to mention that blood pressure spikes seem to go with the episodes and frequently with the UTIs. Adjusting blood pressure medications may be an option that the doctor may consider for such indications.

 

lissa507 answered...

My 85 year old Mother was also seeing little people. After a trip to the Dr. He explained that because her eyes were so bad, the brain overcompensated and made up little people. It is a syndrome called Charles Bonnet. After she had her cataract surgery,, the little people went away.

 

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An anonymous caregiver answered...

We just got an official diagnosis for my mom today of early-onset dementia (she's 63), suspected to be Lewy Body. I have seen signs of it coming on as she's spent the last few years refusing to treat her diabetes and the conversations started becoming very repetitive. I begged her again and again to start taking care of herself, but she wouldn't. My step-dad had MS and was declining and we are now realizing she neglected herself hoping to die with him. She only made herself much more seriously ill in the process, but is nowhere near death. The really sad part is that her mother caused dementia and more serious health problems by refusing to take care of herself with Diabetes. Suffice to say, lesson learned for managing my own health as I age!

My step-dad, a wonderful guy, died about a month ago and we brought mom home with us for Christmas so she wouldn't be alone. A day later we were rushing her to the ER and it's only gone downhill from there. The 2 weeks she stayed with us were a nightmare. I am in my 30's dealing with this and expecting a baby, due in less than a month. My mom has recently ranted against and threatened my unborn baby. While staying with us she nearly strangled my 4 year old with his shirt collar, he managed to wiggle out of his shirt and came away with nothing more than scratches and terror. She kept hallucinating that my 7 year old was coming into the room she was staying in trying to hurt or kill her at night. We have also dealt with severe paranoia and a variety of other hallucinations. Additionally, she has insisted that she would go home and go off of her meds to die and be with her husband again. Problem is she's not gonna die quickly with anything she has, not something she appreciates having pointed out, but would be at high risk for a stroke if off meds.

We were at our wits end! Adult protective services was basically no help, they just file reports. The state's department of adult mental health assistance treated me like I was the one who was out of my mind for asking for help. The suicide hotline had good suggestions for coping, but no way to actually get her help. The Alzheimer's Association also didn't have any suggestions on how we get her evaluated without her consent since her delusions seemed to include the idea that she was just fine. Finally, while planning to send her home, since I was told I had no choice until she "failed" on her own, I spoke to a home health agency while trying to set up some kind of help. I spoke with the head nurse and briefly explained what had been going on and she finally gave us hope and a solution. She told us we could take my mom to the ER and ask for a psych admit since she had proven she was a danger to others and had expressed suicidal intentions. This may not work for everyone, but it was an answer to our prayers!

Mom is currently in the geriatric psych unit for a few more days. She hates me for writing out all that she's done and giving it to her doctors. She also made it clear today that I am utterly horrible for planning to place her with a woman I know who does 24 hour care in her home. Moving her in with me simply isn't an option, she is too violent and I am afraid for my kids and even myself. I now have to get guardianship because she is too far gone and unable to make decisions for herself. Plus she'll never consent to the care she absolutely needs. It's been horrible and we are just starting down this road with her. All I can do is pray and make the best decisions I can, but it's so hard to lose my mom like this, but still have to deal with someone who looks and sounds like her, but who hates me.

 

KarenLorenzo answered...

Aside from memory issues, delusions and paranoia are also symptoms of having Alzheimer's disease. It would be advisable to treat a person with Alzheimer the same way you would treat a normal individual and avoid isolating them as it would only worsen they condition. I have created an infographic containg information about statistics and symptoms of people with Alzheimers which also affect a lot of individuals in long term care facilities as discussed in infolongtermcare.org. Please feel free to take time and check it so you will have an idea and awareness of the struggle they go through: http://www.infolongtermcare.org/iltc-news/infographic-all-about-alzheimers-disease/

 

 
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