OMG!!!! My husband ALSO is seeing people in the house!!! Cannot believe I found this site that states EXACTLY what I am going through!!! It's frightening to me to hear his accounts of these "people". He was diagnosed with Alzheimers about a year ago, prescribed Aracet but refuses to take the medication. He is EXTREMELY paranoid!!! These "people in the house" started about 3 weeks ago and at first I just didn't pay much attention to it thinking it was just some part of his condition but harmless. It's become a daily event now and I'm hoping that it will continue to be harmless. My fear of it is that he may start thinking that I am doing "something".........anything with these people. Without doing anything to cause my husband to become jealous in any way, he has become jealous of phone calls, time I spend in church, etc. He is a big man (75 years old) and can be aggressive verbally. He refuses to go back to see his doctor and I have no idea how to help him through this stage.
He has been diagnosed as having Alzheimer's. I questioned LB, but they did not think so. He is on medication. The people he sees usually are not anyone known to him,. Once it was. These are disturbing, one time saying they were trying to kill us. Melatonin helped before bedtime for a lot of the ones middle of the night. But the events during the day are different. He sees cars in our bedroom, or people in our bed. etc.
My mom would set the table for all those 'dinner guests' she was expecting. No use arguing! Had to take the knobs off the stove because she would find stuff to try to cook, which was a recipe for disaster.... I bought potato chips, cheap bread, and cheap cold cuts and persuaded her the 'dinner guests' could have sandwiches instead of spaghetti. So it was unused, set aside. I switched the food out before it went bad.
Jeanop, what are his hallucinations like? Are the people that he sees in the house hostile? Friendly? Does he recognize them or are they strangers? Is it distressing to him that they are there?
In Lewy Body Dementia hallucinations often occur very early in the disease -- they may actually be the first symptom. They are not a result of any medication -- typically they appear before any medication is started. My husband had LBD so I've had experience and lots of input from doctors and an LBD support group. (As I understand it, hallucinations in other types of dementia often come much later in the disease.)
The most consistent advice I got was it is not necessary to do ANYTHING if the hallucinations don't disturb the patient. Some of the things my husband "saw" would have disturbed me, but he took them in stride.
Generally it is best not to argue that the hallucinations are not real. They are very real to the person who has them! Try to go along with them in a reassuring way. This is obviously harder to do if the hallucination is terrifying than if it is benign. You aren't likely to say, "Yes, dear, the house is on fire. Now go back to sleep."
One woman in my support group had a husband who constantly saw little children in the house. His only distress about this was his concern for their welfare. At dinner he would say, "What about those kids in the living room? Aren't we going to feed them?" And she would say, "I gave them all snacks earlier, but their parents are coming for them soon and we shouldn't spoil their dinners at home." She went along with it and said reassuring things. (By the way, the husband was a minister and his wife had no qualms at all about "lying" to him in this therapeutic way.)
One night (at 3:00 am) my husband woke me up to tell me there were bats in the room. Me: baseball bats? Him: No. The animal that kind of looks like a flying mouse. Me: (long pause) Are they bothering you? Him: No. They are just on the floor on my side of the bed. Me: Well, if they are not bothering you would it be OK to just leave them there for now? If they are still there in the morning I'll get a broom and shoo them out. Him: Sure, no problem. Me: Good night honey.
Another support group story might be a delusion rather than an hallucination, but it illustrates the "go along" approach. The husband (again in the middle of the night!) insisted there was a fish hook in his blanket and it was scratching him. Wife inspects the blanket carefully and can find nothing that might scratch him -- no labels, nothing caught in the blanket, but the husband insisted the fish hook wouldn't let him sleep. So she left the room and returned with a needle-nose pliers and something in her closed hand. After she fooled around with pliers and the blanket for a while she exclaimed, "Aha! You were right!" and she showed him a fish hook. They both slept the rest of the night.
The point is not to argue that there are no children in the living room or there couldn't be bats on the floor or there certainly isn't a fish hook in the blanket. Also to deal with it in a way that is reassuring to the patient with the least effort for you. Don't set the table for the kids -- just explain that they are leaving soon. Don't get up and start chasing bats if they aren't bothering the patient. Try searching the blanket before going for tools. Or maybe just remove the blanket for now.
An adjustment to medications MIGHT help. Aricept is sometimes helpful for hallucinations, at least in LBD where they come early in the disease. Is your husband on that medication?
But if his doctor thinks this is "just" a symptom of where he is at in the dementia's progression, then learning to live with it with the least distress to you may be your best bet.
I am so sorry you are going through this. Sometimes I think the hallucinations are harder on the spouse than on the people having them!
He needs some meds, for sure. My mother had Lewy Body dementia and there were 'people' in her house all the time. Her parents. Women she worked with. Cousins, sisters, in-laws. The Kardashians often slept in the back room. Joan Rivers dropped by, and would disappear in a flash. I could write a book.
Also if you suspect a UTI, you can get a plastic disposable bowl that fits in the toilet and will hold their urine, and get dipsticks - both at the local drugstore. :)
Well Jeanop My Mother Who is 87 years has Alzheimer's and has lost interest in reading the Daily News Paper, + Tv also, and She loved both. Mom suffered haullinations also but We discovered the sleeping pills were causing this. Since Mother stopped taking sleeping pills She's had no problem. When You stop the haullinations Your dear Husband will be much easier to manage. Contact Your Doctor and bring a sample of urine for the Dr to check it for UTI. Jeanop it will get easier. I look at My dear Mother and it makes Me sad realising that She's got no quality of Life. Alzheimer's is otherwise known as the long good bye. It is a cruel and horrible disease. Do not shoulder the caring alone, get help in so You can have quality time for You too.
My mother has vascular dementia. I have her on a Lemon Balm tincture (there's also a tea form) and this is routinely used in Europe for agitation in dementia-related diseases. I use Herb Pharma's Lemon Balm tincture, which I purchase off of Amazon. You can also buy it a local health foods store like Sprouts or Whole Foods. The lemon balm tincture relaxes my mother but doesn't sedate her.
From everything that I have read, as well as my personal experience with my loved one, the right medication dose can really work wonders. My cousin was placed on Cymbalta and it worked miracles for her. She still get mild hallucinations sometimes, but they are brief and comforting to her. Sometimes she sees little dogs on the tree branches outside of her widow, which she loves.
I would agree with Angelkw above. I would try to have him admitted into a psychiatric hospital for a month or two to get his medication adjusted so they know what works and they can monitor him for awhile to ensure it's the right thing.
Short of getting the medication right, I'm not sure of any other remedy, since the dementia patient isn't going to be able to reason or listen to your reason. He's not able to control himself and he's not likely to grow any happier or more content on his own. The patient with dementia often is very difficult to manage if they are aggressive or resistant. I think that encouraging, redirecting, and using patience with them are important, but it may not change their behavior.
He is on anti-depressant as well, the Dr.s feel it is the progression of the disease. He was hallucinating before taking Seroquel. It did help, but was hoping to hear if anyone had ways of dealing with these episodes especially at 3 a,m. If you have things you try, etc,.
My mother was on a too high dose of Seroquel and was hallucinating as well. I am currently wanting to get her off of it altogether; because she is not psychotic; she is demented. I also suspect that your husband is depressed if he is irritable, angry, losing interest in activities; and that you should look into an anti-depressant possibly.
My first thought was also a UTI. You may have him checked again in case the UTI was in its early stages and undetectable the first time.
Seroquel is an interesting medication. For non-elders, seroquel is prescribed as an anti psychotic, mood balancer and sleep aid. For elders, it is prescribed as a sleep aid that can help with psychosis (hallucinations) however it can also have the opposite effect in elders, causing hallucinations. You may want to have his doctor try another medication, perhaps the older medication Remeron or something else, in case its the medication itself causing the hallucinations. Terrible that a medication that is supposed to stop psychosis can actually cause it too.
A final step would be to have him spend some time (a week or two) in a geriatric psych ward for his own safety, especially if the hallucinations make him violent, extremely anxious or scared, or cause him to wander. The doctors could get a better idea of his symptoms and his reaction to medications in this type of setting. He would come out of the unit in a much better place with a new protocol for his medications.
I would suggest, if you haven't done so already, to have him evaluated by his physician to make sure it's not a medical problem such as an urinary tract infection, or dehydration. Good Luck.
Melatonin helped before bedtime for a lot of the ones middle of the night. But the events during the day are different. He sees cars in our bedroom, or people in our bed. etc.
In Lewy Body Dementia hallucinations often occur very early in the disease -- they may actually be the first symptom. They are not a result of any medication -- typically they appear before any medication is started. My husband had LBD so I've had experience and lots of input from doctors and an LBD support group. (As I understand it, hallucinations in other types of dementia often come much later in the disease.)
The most consistent advice I got was it is not necessary to do ANYTHING if the hallucinations don't disturb the patient. Some of the things my husband "saw" would have disturbed me, but he took them in stride.
Generally it is best not to argue that the hallucinations are not real. They are very real to the person who has them! Try to go along with them in a reassuring way. This is obviously harder to do if the hallucination is terrifying than if it is benign. You aren't likely to say, "Yes, dear, the house is on fire. Now go back to sleep."
One woman in my support group had a husband who constantly saw little children in the house. His only distress about this was his concern for their welfare. At dinner he would say, "What about those kids in the living room? Aren't we going to feed them?" And she would say, "I gave them all snacks earlier, but their parents are coming for them soon and we shouldn't spoil their dinners at home." She went along with it and said reassuring things. (By the way, the husband was a minister and his wife had no qualms at all about "lying" to him in this therapeutic way.)
One night (at 3:00 am) my husband woke me up to tell me there were bats in the room.
Me: baseball bats?
Him: No. The animal that kind of looks like a flying mouse.
Me: (long pause) Are they bothering you?
Him: No. They are just on the floor on my side of the bed.
Me: Well, if they are not bothering you would it be OK to just leave them there for now? If they are still there in the morning I'll get a broom and shoo them out.
Him: Sure, no problem.
Me: Good night honey.
Another support group story might be a delusion rather than an hallucination, but it illustrates the "go along" approach. The husband (again in the middle of the night!) insisted there was a fish hook in his blanket and it was scratching him. Wife inspects the blanket carefully and can find nothing that might scratch him -- no labels, nothing caught in the blanket, but the husband insisted the fish hook wouldn't let him sleep. So she left the room and returned with a needle-nose pliers and something in her closed hand. After she fooled around with pliers and the blanket for a while she exclaimed, "Aha! You were right!" and she showed him a fish hook. They both slept the rest of the night.
The point is not to argue that there are no children in the living room or there couldn't be bats on the floor or there certainly isn't a fish hook in the blanket. Also to deal with it in a way that is reassuring to the patient with the least effort for you. Don't set the table for the kids -- just explain that they are leaving soon. Don't get up and start chasing bats if they aren't bothering the patient. Try searching the blanket before going for tools. Or maybe just remove the blanket for now.
An adjustment to medications MIGHT help. Aricept is sometimes helpful for hallucinations, at least in LBD where they come early in the disease. Is your husband on that medication?
But if his doctor thinks this is "just" a symptom of where he is at in the dementia's progression, then learning to live with it with the least distress to you may be your best bet.
I am so sorry you are going through this. Sometimes I think the hallucinations are harder on the spouse than on the people having them!
I would agree with Angelkw above. I would try to have him admitted into a psychiatric hospital for a month or two to get his medication adjusted so they know what works and they can monitor him for awhile to ensure it's the right thing.
Short of getting the medication right, I'm not sure of any other remedy, since the dementia patient isn't going to be able to reason or listen to your reason. He's not able to control himself and he's not likely to grow any happier or more content on his own. The patient with dementia often is very difficult to manage if they are aggressive or resistant. I think that encouraging, redirecting, and using patience with them are important, but it may not change their behavior.
Seroquel is an interesting medication. For non-elders, seroquel is prescribed as an anti psychotic, mood balancer and sleep aid. For elders, it is prescribed as a sleep aid that can help with psychosis (hallucinations) however it can also have the opposite effect in elders, causing hallucinations. You may want to have his doctor try another medication, perhaps the older medication Remeron or something else, in case its the medication itself causing the hallucinations. Terrible that a medication that is supposed to stop psychosis can actually cause it too.
A final step would be to have him spend some time (a week or two) in a geriatric psych ward for his own safety, especially if the hallucinations make him violent, extremely anxious or scared, or cause him to wander. The doctors could get a better idea of his symptoms and his reaction to medications in this type of setting. He would come out of the unit in a much better place with a new protocol for his medications.
Angel