Follow
Share

My dad died 1-1/2 years ago and she began experiencing this about 8 months afterward. I have read about Morgellons Disease and Ekbom Syndrome. I feel she is suffering from loneliness as she lives alone and will not consider living with me. We have been to multiple doctors and exterminators for the house as well and no one sees anything. My question is "Would it be detrimental to her if I shared these articles with her about Ekbom and Morgellons?" I want to be honest with her about showing her this information for her to consider. Would that be the wrong thing to do? I just don't know. Is this too hurtful and honesty would not be the best thing to do here? Any advice would be most appreciated.

This question has been closed for answers. Ask a New Question.
My scalp frequently is itchy. But I do not feel any sensation of moving things on my head. I use anti itch shampoo (one type of Head and Shoulders is made for this). There are other products on the shelf for scalp itchiness too, including products you can put directly on spot where scalp is itching to alleviate the problem. Try a google search for stopping scalp itching. The suggestion of a petroleum jelly mixture to be used for it’s psychological effect sounds like it would be difficult to remove. Have you asked a hairdresser? Or a school nurse who is experienced in looking for lice, etc. on the scalps of many children. Good luck.
Helpful Answer (0)
Report

Damita, I don't feel Skeeter is being 'dismissive.' I sense s/he is really trying to figure out how to handle, with sensitivity, a situation of concern that s/he doesn't know how to handle; thus reaching out to our community here. Your input is valuable - as is all the other responses. I did hear about the libraries - and feel very uneasy now going to a hotel - even a $200/night one. I imagine the price one pays for a room has little to nothing to do with bed-and-other bugs. Anyway, please be mindful/reframe from jumping to conclusions or reading into a person's motivations; people here reach out when vulnerable and really looking for possible ways to handle/manage often very difficult situations, esp when dementia is involved. 
Helpful Answer (2)
Report

Hi everyone,

Thank you so much for all of the feedback. I have tried everything presented in the feedback and more. I am trying to be open minded and have not ruled anything out. I am on my mom's side but am getting to where I don't know what to do anymore. I have been to the local county extension office with samples. They told me it is just house dust she is giving me in samples. She does see bugs and shows them to me and it is always lint or something similar. She then tells me the bugs turn white upon touching them and turn into dust or something similar. I am not impatient with my mom but just don't know what to do. So far, she is behaving normally with all functions of daily life except for this one thing. Every suggestion given has been tried as this has been going on for almost a year now. I am not giving up and will continue to approach this from an investigative point of view. I thought it was some type of medicine or diet consequence. She takes no Rx drugs and some herbal things, which I am wary of somewhat. She assures me she has stopped taking them. Her best days when she tells me she did not feel the bugs once (mostly on her scalp now but in the beginning were on her legs, bed lice, etc.) are when she is with people and not focused on being by herself. I wish she would come live with me but she is very independent, isolative and stubborn. At this time, she is still seeing people (I have someone help her with housework once a week and my mom has a friend she sees once a month or so, that's all she can handle). I am thankful for that much. I have decided not to approach her with any articles I have read or share any information of that nature. I think it would do more harm than good (my siblings live across country and don't have much tolerance for this and I feel she needs someone to just accept what is being said). I have read that this will probably go on for the rest of her life. I am going to be supportive and do what I can to make her comfortable. I very much appreciate everyone's comments. They helped a great deal in that so much support came out of them. Thank you so much everyone.
Helpful Answer (2)
Report

As you are confidently ruling out the presence of bugs, the answer may lie somewhere else. Food, water and air are the three main foreign matter that one ingests. Her eating habits may be a good point to start with. Has there been a change in her dietary habits during the past one year?

Going vegan may help.  I would suggest inviting her to stay with you only for a few days and feed her only vegan diet and observe her for any encouraging signs. You may persuade her to stay with you by saying that you need her immediate help with something or the other.   Think of something convincing.  At least this way you can eliminate her diet or loneliness as suspects before frightening her with fancy disease names.
Helpful Answer (0)
Report

Skeeter4649: It is possible that the "bugs in her scalp" are confabulations, which coincide with Ekbom Syndrome and Morgellons Disease. She needs to be evaluated by a geriatric psychiatrist to determine the rationale behind this issue.
Helpful Answer (0)
Report

There used to be an old hair treatment where you rub lots of olive oil into scalp & wrap the hair in towel/plastic - let it sit for a while then shampoo out - if nothing else her scalp will be moisturized & if dryness is issue she could get some relief -

Worse case: is that you have taken her seriously & have personally tried to help - see how many days it helps because it might need to be a regular thing - if that is the case make it a girls' thing with wine & giggles at your mom's place - try doing it yourself too - lets make some lemonade out of those lemons
Helpful Answer (0)
Report

Maybe an oil put on her scalp and left for a while then shampoo. Remember cradle crap, it comes from not enough hair to absorb the head oils so the baby got little patches of dry looking skin. I used baby oil on them, waited, then shampooed rubbing with a wash cloth. Maybe just washing her hair with Head and Shoulders.
Helpful Answer (0)
Report

If you think the truth will be helpful in abating the symptoms, then try it. She probably won't remember it for too long though.
Helpful Answer (0)
Report

Conditions like this have hallmarks of the disease, and many have precursors where you can also give an Uh Huh. Frankly, a cursory look at Ganser Syndrome would apply to my parent, but meeting diagnostic criteria would be a stretch. But, it does illuminate toward a group of conditions that could be explored.

In my experience, once a person is of advanced age or suffering from cognitive decline, the primary diagnosis is what drives most of the care. A competent physician would hear you, but look at factors that just lead to the same treatment or the possibility of only a palliative type of treatment. I doubt trying to reason with your parent would do anything, and it could even exacerbate the symptoms. There are also so many conditions and diseases that present the same way or nearly so; and physicians often have their favorite when a person meets X,X, and X. I can already think of a few conditions that cause what you are seeing, some are simple hydration and dietary, others are extremely complex and have no treatment.

Most places do not have this type of professional, but a physician who starts with a ton of blood work (especially endocrine) and then acts as a coordinator can get you to the colleagues who you need to see. But it is a lot of work for you, and in the end they could just as easily, and it could be warranted for them, just to consider a type of dementia.

In healthcare we often see wonderful family members try so hard and end up chasing diseases, and I even do it, but after you know the facts from a physician (and the parasitic psychosis would require a psychiatrist), but after you know you may need to look at the results and just know you have already done all you can do.

Is the skin being damaged, and it the skin thin to begin with?

One can get driven mad by this type of stuff, and sometimes, and in my case I realize that the person (and behavior) in itself is a component. The repetitive scratching and the attention it gains can just as easily have a purpose in MH or physical health which is probably my parent's situation. I do not mean to say yours.

I do have advice, but honestly I do not think it will help too much - and I was an ethicist with NIH for 6 years.

I do also feel that this expression by your parent will turn in to another manifestation over time. Not worse, it could just fade away.

But if this expression seems new to an aged person but who is otherwise just a person at their age then it needs a look. Not 3-4 looks, even if I have needed more than one look even for broken bones I've had, but get the advice from the physician and try it, then the next one, and then consider just knowing it is the way it is - but keep your sanity.

I will not say these sensation are normal, but they can be typical. Know you are nonetheless comforting and if there was something glaring to fix you would fix it.

Many of us have seen 4 year old chewing their nails. We try everything that does not work until the child develops out of it. Or, they don't and there is a social reason for the behavior and maybe that can be slightly addressed. But there is a difference if the child is causing loose teeth and bloody nails or just chewing way to much and it is unsightly or painful emotionally for a loving person to watch.

Access the risk to your parent. I am sure this effects quality of their day and your day, but unless they are tearing apart their skin, time can be your ally as you have someone look in to it for you.

Is she seeing bugs? She does not have to though. But as everyone is giving good thoughts, even narcotics can cause factitious itching.

In the end, we have to realize that professionals do not know enough about the mind or behaviors. You are looking at a crapshoot to possibly get this resolved even if it is possible. Even if you try to soothe or hyperstimulate the skin, this could all be a matter of the mind and the mind feels or does not feel according to its own state. Frankly, I was also a psychotherapist, and you can try that too as medications alone are not too effective, but do not put too much on yourself.

I have a hard time accepting it, but when professional cannot help does my willingness to go even further accomplish much. In my case it does not.
Helpful Answer (2)
Report

Some medicines will also cause hallucinations. I had to stop DH's benydryl because it was causing hallucinations.

He's 96 and he too says he has bugs - his bore into his skin and he kills them when they re-emerge. HomeHealth just looked at me and shook her head no. So my guess is it comes with age. His dreams also feel too much like reality and he believes that everything happens.

I was pretty much told to just go along with things to the best of my ability. I sprayed too - and really, some 'bugs' are microscopic.

I can relate to your fear of this problem but if she's not scratching to the point of bleeding, it might just be one more thing to try to deal with.
Helpful Answer (2)
Report

Hello, scabies, lice, bedbugs and mites are prevalent in independent living and nursing homes, as well as assisted living facilities but most of the places deny it. Public transportation, movie theaters, libraries and other locales also have these problems. Even hospitals are infested!  Most pest control companies are shysters, including the well known ones. Catholic Charities have several hud buildings and finally addressed the problem. As for me, I studied for a private pest control license so speak from a point of knowledge. Do not be so dismissive.
Helpful Answer (1)
Report

On top of all the suggestions above, there are certain medications that can cause a prickly sensation, like that of goosebumps rising on the scalp and itchiness. Take a close look at her medications to see if she might be experiencing one of those side effects. My mom has experienced this side effect from a medication that raises her blood pressure. A neurological consult with a CT scan wouldn't be a bad idea either to rule out any condition that may be causing a dysfunction of sensation. Dad had unusual sensations of pain on the skin of his right side of his chest followed by the discovery of a mass on the left side of his brain. I guess what I'm trying to say is look at the whole picture, not just the scalp. Although your mom's symptoms could be imagined, perhaps they aren't.
Helpful Answer (1)
Report

Having an itch somewhere that just won't go away is very distressing. I have had an all over body itch for about 15 years give or take. But, I'm diabetic, have peripheral neuropathy, hypothyroidism, and fibromyalgia. I haven't been able to get any relief except with the use of tranquilizers. Doctors I've seen just will not prescribe them for me. Have you looked in to a medical cause for this itch? If not, please don't dismiss this route of investigation. There are many reasons why a person might itch, as I've discovered. I hope your mom can find some relief from this debilitating symptom. Doctors generally don't seem to be as concerned about this as they would pain. Good luck....
Helpful Answer (2)
Report

Does any of the multiple doctors you've been to agree with you that some sort of psychiatric condition is the likeliest suspect? If you want to go down this route I'd have thought it would be best to have professional guidance.

Is it just her scalp she believes to be infested? - or are the alleged bugs roaming around and making appearances elsewhere?

I like the ItchBeGone idea, very nice :) But also, maybe a good quality scalp mask with peppermint or other "tingly" feeling ingredients would help relieve her discomfort (and make her hair look nice).
Helpful Answer (1)
Report

Has she been diagnosed with a form of dementia. What you describe can be felt by persons with Lewy Body dementia.
Helpful Answer (1)
Report

I work for a University Cooperative Extension Service. Some of you may be familiar with county Extension offices, which should be in every county in every state as a service to the community from the University. They provide science-based University information to county citizens on things like gardening, finances, family life, home management, agriculture, and natural resources. Many county offices have an entomologist on staff (mostly to help people identify bugs in their gardens).

Well, anyway, because we are known for having entomologists on staff, we frequently have walk in clients with Ekbom Syndrome. They will come in horrified that they have an infestation, even taking off their clothes in front of us or leaving hair and/or skin samples on our desk for us to test for bugs. They are certain they have an infestation. They never do. They have a delusional disorder. We sternly and kindly tell them we cannot take their hair or skin samples and to please put their clothes back on. We give them a handout on "invisible itches," which includes a write up of Ekbom Syndrome. But sadly, there is little we can do to help them and the handout does nothing to assuage their belief that they are infested. They need psychological counseling and perhaps medication. It's very sad to see because they are sooooo convinced they have bugs on them. If you mother is like the people we see in our work sometimes, I'm afraid an article on the syndrome may do little to help her. A visit with a psychologist may be necessary.

That being said, I really like a previous poster's idea about making her some "ItchBeGone" cream. Maybe that will be all you need!
Helpful Answer (3)
Report

All good ideas above, I just wanted to add that if you share anything about disorders that cause delusions you might think about blaming it a medication or combo of medications providing she takes some. The trick here of course is not to let her think about trying to stop or change that med so it should either be something she knows is really important or doesn't have an alternative. You would need to weigh of course whether or not her "bugs" are bad enough she will do anything to get rid of them or she might be better able to live with the sensation knowing it isn't real but caused by something beyond her control. Is she on any narcotics for pain? They can sometimes cause an itchy, tingling sensation in the scalp. If so maybe try a slightly lower dose to see if that still does it job on the pain but alleviates the sensations on her scalp.
Helpful Answer (1)
Report

Since she is having delusions, (poor lady!) it would be logical to have her seen by a geriatric psychiatrist. You know her -- how would she react to being told you are making an appointment with a mental health professional? If you feel this would be entirely too upsetting, perhaps you could just say you found a doctor who has a better understanding of the itching.

Sometimes, with a delusion it can help to produce a "cure" or a "solution." One lady's husband with dementia insisted there was a fish hook in the bed. No amount of showing him the blankets would convince him it wasn't there. She told him she was going to get a pair of pliers, left the room, and came back with the tool. She proceeded to "find" a fishing lure (hidden in her hand) and pull it out with the pliers. They both went back to sleep.

Maybe your mother would feel better if you rubbed a yellow salve into her hair (one that looks a lot like Vaseline, but has a great computer-generated label calling it ItchBeGone) It needs to soak for an hour and then be carefully washed out with multiple rinses. Maybe even some apple cider vinegar in one rinse.

This will at least reassure Mom you are taking her seriously and are on her side, even if it doesn't convince her she doesn't itch.

I really think a psychiatrist is the best bet. (Give him or her a short statement explaining the problem beforehand.)
Helpful Answer (7)
Report

Poor lady! I suspect advising her about the syndrome wouldn't do any good if multiple doctors haven't been able to reassure her. But I don't think it would hurt, if you reassured her that of course you completely understand and believe in the reality of her symptoms and want to help her resolve them. Is there any way to get her to a psychiatrist or psychologist?
Helpful Answer (1)
Report

Skeeter, or the problem could be a simple case of Urinary Tract Infection. An UTI in an older person can cause some very strange results.

Also, check to see if Mom has dry scalp... that can give a feeling of something moving about on one's head. Have Mom use a good "conditioner" on her hair to see if that might make a difference. You may need to do a couple weeks of shampooing and conditioning to see if it works.
Helpful Answer (4)
Report

This question has been closed for answers. Ask a New Question.
Subscribe to
Our Newsletter