How do I get help for my Dad (89) when he won't let me? Anyone ever heard of Ekbom Syndrome?

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My dad says he has bugs crawling on him and biting him. It doesn't affect my mom so he says it only affects men not women. He has a major cleaning ritual of his body several times a night and day. He wont let anyone but me come to the house for fear they will catch it. He doesn't like to go out much either for the same reason. He says he wants to kill himself because he is so bothered by it. But he thinks there is nothing a Dr can do and wont even talk to one about it. I try to tell him it could be that there really isn't any bugs and it is caused by a medical problem and maybe we could get some medicine to help but he will not listen to me. Just gets mad. It is causing my mother a lot of stress. I am really worried about both of them and don't know what to do. Any suggestions would really be appreciated.

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This has got to be a horrible disease! As was mentioned, the ritual cleaning sounds a bit like OCD, so this could be more complicated yet.

Does your dad take any medications such as blood pressure pills? Does he see a doctor at all? If you can convince him to go for a checkup for something unrelated to the real issue - Ekbom syndrome there's some chance for help.

For example, if you can get him to make an appointment for a medication refill, then write a letter to the doctor ahead of time (or help your mom do so). While your dad is in the office, the doctor can then address the syndrome.

Often, once a doctor asks direct questions, a person will open the door a bit to communication, especially if the doctor suggests a treatment.

Good luck. This has to be horribly hard on all of you. Please let us know how you are doing with this.
Carol
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Okay, he goes for regular checkups, there's your opening. Get the word to his doctor ahead of time. Your dad sounds like he has classic mild symptoms. It can get a lot worse if he starts digging into his skin to help the bugs get out or has to keep changing residences to try and avoid the bugs. He has delusions of being infested with parasites, delusional parasitosis, or Ekbom's Syndrome (ES). The delusion has been known to spread to others (watch out mom). Ekbom described several syndromes and ES is different from RLS, restless leg syndrome. You can do your parents a great service by telling his doctor and maybe printing and mailing him some articles. The doctor should be able to help him with medications. It could be a lot worse than you are currently describing, but don't let it get worse or spread. You did the right thing by researching this....keep at it to help him beat this delusion medically.
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Something you might want to check into, if your dad doesn't like to leave the house, is whether or not there are doctors who can come to him. Where we live, this seems to be a growth industry of doctors who make or only make house calls. They all take Medicare and whatever supplemental. Then they order tests or services to the house like blood work, x-rays, podiatry, PT, etc - again all covered by Medicare and the supplement. You said your dad is very cautious about having anyone else in the house for fear they would catch this "infestation," but that might be worth a try if you can't get him to go see the doctor.

In response to several of the posts suggesting a check for drug interactions, which is an outstanding idea, www.drugs.com has a drug interaction checker we've used quite a bit. Be sure to look at everything your dad takes, including supplements, herbals, vitamins, etc. In our experience, doctors occassionally catch serious interactions and side effects, but the pharmacist is, by far, the master. Put all the bottles of pills and creams/ointments your dad takes (including vitamins, supplements, herbals) into a bag and then take the bag of bottles, tubes, to his pharmacist. You should get a solid answer quickly.

Unexpected drug reactions are not something to take for granted. In the dementia/Alzheimer's brain, even things that they've taken for years can cause all sorts of new troubles. My MIL has dementia or Alzheimer's and was increasingly violent (kicking, hitting, biting) on top of her hostility. We took her to a regional expert. He looked at her overall condition and suggested we slowly take her off of all her medications. They weren't doing much anyway, he said, other than cause trouble. Sure enough, that blood pressure medication and diabetes control meds which were a battle to get her to take were doing more harm than good. Removing her from her medications helped QUITE A BIT while her blood pressure remained normal and her sugars were good. Now I wouldn't recommend this for everyone...you've got to know your loved ones conditions, how serious they are, and weight out the positive vs negative in stopping the medication which should be done in consultation with whomever prescribed the meds. A prescription is not a military written order. Taking it is a choice, but make the choice as an informed decision maker.
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I hadn't heard of Ekbom's Syndrome so I looked it up. In short, delusions of bugs crawling and biting you. There are some medications to treat this. If you haven't already talked to Dad's doctor about this go ahead and do it. Have you printed anything out for your dad to read about this syndrome? Or your mom? His cleaning ritual sounds sort of OCD....does he think it helps? That should also be discussed with the doctor. Maybe the doctor can fake something that will help your dad think that he has acquired the preventative female characteristic that protects women if he won't just go for a normal adjustment of medication. Does he ever go to the doctor? Bring it up to the doc ahead of time. Thank you for bringing this syndrome to my attention. I know someone who may also have this.
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Who knew?

"Abstract Entomologists estimate that more than 100,000 Americans suffer from “invisible bug” infestations, a condition known clinically as Ekbom syndrome (ES),
although the psychiatric literature dubs the condition “rare.”

This illustrates the reluctance of ES patients to seek mental health care, as they are convinced that their problem is bugs. In addition to suffering from the delusion that bugs are attacking their bodies, ES patients also experience visual and tactile hallucinations that they see and feel the bugs. ES patients exhibit a consistent complex of attributes and behaviors that can adversely affect their lives."

^^ This is a pdf essay that, if you haven't already found it, will be very informative. http://www.ent.uga.edu/pubs/EkbomCurrPsychiatryRpts.pdf

From what you've told us here, it actually sounds like your dad's case is rather mild. After you've read the pdf, you might agree.

Unfortunately, the article states that the medical community doesn't really know how to effectively deal with this. And, as you read in the quote above, sufferers are likely to resist treatment because, well, "My problem is BUGS." God.

Posters will read this a lot from me: Take dad's pill box and Google every single medicine he's taking. See if any of them cause hallucinations, confusion or anxiety. If they do, and since it seems dad hasn't had condition forever, just MAYBE switching out or eliminating a med will reboot his brain or lessen his delusions.

You may be able to get his doctor to do that without a visit. MAYBE. If you have his healthcare proxy, I'd say it's likely...especially if you give the doctor a 30-second description of the syndrome manifestations about not wanting to seek medical care. *shrug* It's sure worth a try.

Your poor parents. Dad for suffering from this rare delusionary syndrome and mom for having to endure.




Almost unbelievable, WeHow. Lordy. And you are to be commended for doing the homework necessary to give your dad's behaviors a name and face. Wow. I'm thinking you may have already found the Willis Ekbom Disease Foundation, but in case not? Here's the link: http://www.rls.org/about-rls-wed/treatment-options
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Yes I found this Ekbom Syndrome on the internet while searching for some help. This sounds exactly like what he has. Yesterday was the first day he found out I knew about what was going on with him. My mom had become very upset because they were supposed to have a new cable service installed that day and he told her he wanted me to cancel it because he didn't want to give the men the bugs. She called me over to talk to him. I talked him into letting us get the service installed if he could just stay upstairs in his room. When I talked to him about what was going on with him he wouldn't believe anything else except what he believed. He is very stubborn and thinks he is always right. As far as the cleaning ritual it is more like how how often he washes up and shakes out his clothes. Trying to get them off of him and out of the house. It is not anything like OCD. He even tried to show them to me by shaking a towel over a sink of water. I didn't see anything except something like skin flakes. He said I just didn't want to see them. I asked him if we could talk to his doctor about it but he said no. I could talk to someone else about it...my doctor...but not his. I tried but they said since he is not a patient there is nothing they could do. He does go for regular checkups. I think he has high blood pressure medicine not sure. He had quadruple heart valve surgery many many years ago. Not sure if that is related. This only started about 4 or 5 years ago. I thought about having him read the article but I'm trying to find some professional help first to see if that would be the right thing to do. I don't think he will like it that we think it is a mental problem. My mom wont talk to his doctor either because he would get mad at her. I just really don't know where to turn for professional help when he wont even see them. They wont be able to help me if they cant talk to him.
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When I started reading, I thought your dad had a form of Morgellons, which is another situation where people think they have things coming out from their skin (fibers). One site talks about Lyme Disease protocol as a possible treatment. Since there's been a lot in the press about Morgellons in the past five years or so, if you research it, you might find some treatment approaches or ideas about how to talk to your dad to get him some help.

But overall, it sounds like a very frustrating thing to have and for family members to deal with. I think there's probably something going on physically with a mental component thrown in, but we're just not able to scientifically figure out what that physical something is yet.
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