How do I care for my mom with dementia when she is seeing people who are not there?

Everyone's medication responses really vary. Could she be having the hallucinations related to any meds she is already on? My mom had to get off Cymbalta even though it helped pain and depression for hers to stop. OThers get them from meds often cosnidered innocous and may react differently to things they used to tolerate really well as they age. Some people can take antipsychotics for hallucinations without any adverse side effects, others it does cause problems. whoever you get to assess her, make sure they are side-effect sensitive - i.e. not going to just crank up the dose regardless of how you think it is affecting her. Probably a good geriatrician is your best bet, some psychiatrists are very simpatico also but it varies.

TIRED:

Not that long ago my doctor prescribed me a daily sleep aid. The 2 red dots on my alarm clock turned into eyes; nuts & bolts in subway station steel columns turned into faces; I'd yell at ghosts walking on the subway tracks from the platform as trains entered the station. Then I'd get mad at people who couldn't see what I saw. ... I called them "crazy."

Try keeping a log when your Mom takes meds and when visions begin/last to see if there's a correlation. If there isn't, "siguele la corriente" (go along) with her perceptions. Trying to make sense of all that jumble of stimuli, perhaps her over-medicated brain might be rewiring itself into all kinds of storyboards just to maintain balance.

I've always wondered how people with dementia perceive us.

Infections in the body such as UTIs can cause hallucinations, even for people without dementia. When the infection clears up, the hallucinations go away.

Hallucinations can be a reaction to drugs or drug combinations. Changing the medications clears that up.

Hallucinations can be a part of dementia, with some types of dementia especially prone to them. If this is the case, they often respond well to medications.

All in all, as vstefans says, it is important to seek medical guidance for dealing with hallucinations.

While you are waiting for some medical intervention, many caregivers find it best to accept the hallucinations as the loved one's reality. If the grill is a little boy, it is a little boy, and no amount of reasoning or presenting evidence changes that for the person experiencing the hallucinations. Trying to persuade someone out of their reality is just apt to be frustrating for both parties. Accepting and redirecting the conversation often works better. "The boy's parents are coming for him soon. Do you remember the year we had 14 boys here for Bobby's birthday party? Oh my! wasn't that a riot!" (If you reach back into the past, memories might be intact.)

Thank you all for your response- It is hard to watch a parent go thru this.

It sure is very difficult. Think of only one moment at a time to try to avoid becoming too overwhelmed. It is emotionally draining. God bless you as you try to get a handle on your mother's situation.

Thank you caramia, sometimes it is overwhelming, please keep me in your prayers.

I am happy to do so!

Caregiving for a loved-one with dementia, when one of the persistent
symptoms is visualizing people that are not there, is a challenging
task. The first thing that you will want to do is to minimize the
stimulation that is causing hallucinations. Is seeing herself in the
mirror causing her to see images that she mistakes for someone else? Is
she taking new medication that takes time for the body to adjust to?
These are common stimuli that you can help adjust.

In general, it is good to remember to not fight with your loved-one. The
best thing to do is to remove whatever is causing her anxiety and to
calmly and gently reassure her that there is no one there.

Also, I would recommend that she visit a neurologist or psychiatrist to
determine if she can be prescribed an antipsychotic medication such as
Haldol, Risperdal, Seraquel, Thorasine or Zyprexia, which are the most
commonly prescribed drugs of choice to decrease hallucinations.

Oh my gosh! I just have to chime in here. NOT Haldol, NOT Thorsaine, unless you have a pretty firm diagnosis of what kind of dementia the patient has. I know that you are an expert, Renata, and I respect that, but are you at all familiar with Lewy Body Dementia (PDD and DLB)?

The Lewy Body Dementia Association has this statement on several pieces of literature for doctors, emergency rooms, and as a wallet card for patients:

Up to 50% of patients with LBD who are treated with any antipsychotic medication may experience severe neuroleptic sensitivity (worsening cognition, heavy
sedation, increased or possibly irreversible parkinsonism, or symptoms
resembling neuroleptic malignant syndrome which can be fatal).

My husband's doctor has listed thorazine, mellail, stelazine, and haldol as allergies for him. In spite of the hard work of the LBDA, the word hasn't spread as fast as we caregivers of LBD loved ones would like. I have read horrid stories of people being given these drugs, especially haldol in ERs and SNFs, sometimes in spite of caregivers' intense protests, and never recovering from the severe reaction.

Because so many people just have "dementia" without a more specific diagnosis, I think it best to err on the side of caution and act as if the dementia MIGHT be LBD, and to avoid the drugs that could cause irreversible damage or even death.

I know that you are just stating what is commonly used, and you are right, but there are drugs on that list that should be much less commonly used. As an expert, would you be willing to read some LBDA literature and help spread the word about using caution with this class of drug in dementia patients?

We can use all the experts on our side that we can recruit!

Mom used to see "a man in her bathroom" (when she could articulate this but she has passed this state now). She spoke of seeing almost every day. I never 'saw' him.

But when she said "there's Mama" pointing out the glass doors to the backyard I got what she was seeing. Some stacked up flowerpots did look a bit (if you squinted up your eyes) like my grandmothers profile going off to fish with her cane pole.

I ended up leaving them there all summer because it made her happy.

Mom can't have an intelligilble converasation anymore - only a "her" or a "them". She is confined to bed and I leave the TV on for company - QVC is the one she likes best - and sometimes I catch her having a "la la la" conversation with the people on the show.

My mom has Lewy Body Dementia and has hallucinations. She has seen cats, rabbits and gypsy children. Mom totally believes this is happening. There is no way to convince her that it is a “false belief”. How to deal with it really needs to be what works best for you. They aren’t going to change their incorrect perception.

Hallucination like this are one of ways to determine it's LBD rather than ALz. LBD sometimes has "the illusion of motion" visually. She would see cobblestones rather than a tile floor. Exelon patch has worked well for her. The other ones
like Aricept were a total waste. A good gerontologist can ferret out which type of dementia the patient has - the treatments for the different ones vary. So maybe you can have her evaluated. Good luck.

Thank you for your response. If one has concerns about any medications, they should be discussed with the patient’s physician.

Igloo, have you found that most of your mother's hallucinations are benign? Animals and people, especially children, seem to be common, and they are seldom threatening or disturbing in LBD (although they can be). I think that makes them easier to deal with.

Here is one conversation I had with my husband (LBD) at 3 am:

darling husband: There are bats beside the bed!
me: Baseball bats?
dh: No. Flying bats. You know, like mice with wings.
me: What are they doing?
dh: Just sleeping
me: Are the bothering you?
dh: No.
me: Could this wait until morning, and if they are still there I'll chase them out with a broom?
dh: OK

Whew! I'm glad those bats weren't bothering him, because I wasn't keen on getting up at 3 am and chasing even halluicated bats out of the house. And what do you know? Those bats moved out by morning without any chasing at all. :)

Igloo, do you and your mom carry wallets explaining the risk of certain drugs?

Mice with wings - what a great visual. Especially since mice are cute while bats well that's probably only a face a mom bat could love.

My mom is in LTC now so her wallet days are over. But before I had a laminated tri-fold done at Kinko's in hot pink with her info and about LBD as it was for her
with the NO psychotic's to be giver ever that she always had in a pocket. I think we had a dz made. That was my fear that if she got super confused on an outing the IL would take, something would happen and she went to the ER...the psychotic drugs.

Yes, her hallucinations are totally benign, distant and not cuddly. I don't remember ever any story of any that were threatening.

Now this probably went on for years but really only noticeable when she moved into IL in 2007. The first one was a cat. In the corner by the door to her balcony,
She had a 3rd floor apt in the corner. Dark cat, no meow just sitting there. She told me all matter of fact. I went up and down the 3rd floor to see who's cat. No cats MIA. About a couple of months later another cat also dark by the door, sitting silent. Again up & down the hall. No cats and more importantly no cats on the 2nd or 3rd floors.About a month later a rabbit in the bedroom by the closet. No fear or concern very matter of fact there was a rabbit. The cat has been back maybe 3 -5 more times but just once in her LTC where she moved just this Jan. She knows it's not real because she does not go to pet or set food out for which is something she would do. If you insist it's false, she will get all worked up. So we just buy into it. I'd say the vision lasts maybe 1 - 2 hrs.

She has other visual hallucinations, like seeing the floor as cobblestones or seeing levels on a surface that aren't there. I do think the visual changes, which for her are episodic, are one of the reasons why LBD'ers have the flat "shuffle" when they walk. It must be a way for the brain to protect the body because their visual perception changes and distorts reality.

Do you know what a "cookie" is? In film and photography, a cookie is a large dark cardboard or wood rectangle that has openings cut into it. They are usually kinda amoeba shaped and random. You use it to diffuse light mainly for backgrounds. The light shoots thru the cookie so the background has a dappled or sharp effect depending on how close the cookie is to the light. It can be pleasant but can be very eerie. The way my mom described how the floor looked or how a surface is, it is as if she is seeing something lit by a cookie. I think the cats and rabbits are shapes of shadows rather than really seeing an animal. After the BP spill, she saw oily, iriridesent shapes. So there is some connection to current reality in what she see's.

She has seen orphan gypsy children (how do you know their gypsies? Because they have marks on their bodies and wear things in their ears, how do you know their orphans, because their parents are never with them,) living in the LTC - this one isn't a hallucination. She's by a college and see's the students from afar so that is what that vision is about. But just 2 weeks ago her roommate started a daycare center, right there in the room. There were 3 little, little kids in the room but they were very quite and did nothing but nap. This one is a hallucination. But again these are all matter of fact and don't seem to upset her.

WIth her, the paranoia is more of an issue than hallucinations. This is much harder to deal with as she is adamant about whatever it is. It used to be the episodes on this were every 3 - 4 months now it is almost every day. I do have to hand it to the NH staff, they just let all this just roll off and take it all in stride.

Shoot! My dad is a spiritualist and he has been speaking to people I don't see for years so I don't give it a 2nd thought. After checking all the good comment ideas, and making sure that she is drinking enough water and other fluids, just realize that this is one of the symptoms and go along with it. Other wise it just gets frustrating for both of you.

Uti's cause this with my mom. Her urine smells strong. After meds and it clears up she is back to normal.

My dad is 91 years young he swore up and down there was some man here he cussed me out because of it

My dad who is 91 years old said there was a man in the house when I explained there was no one but me, him and his grandson. He basically cussed me out and said I was lying