Hi! I'm new here. I'm hoping some of you who have had experience with delusions/hallucinations can give me some advice.
My 84 year old mother has had increasing dementia for 3-4 years. No diagnosis of ALZ, doctors just say dementia. Anyway, according to the Levels posted on another thread, I'd say she most closely fits between levels 5 & 6. She lives alone. My brother and I live 3 hours away. We finally hired a geriatric care manager and got home care for 6 hours a day, because she was not able to cook anything for herself and was not eating. She doesn't think there is much wrong with her and hates having the aides around.
There are plenty of problems with caring for her, especially long distance, but the one thing that causes the most problems for her and for us is this delusion/hallucination she has about "bugs". Actually, except a little memory loss and confusion it was one of the 1st symptoms we notices. What I'm trying to say is that as her condition deteriorates this one thing remains constant. She started off telling us she had bugs in the house, so we had people come and spray over and over, even though we never saw bugs when we visited. Then she started picking up trash, lint,etc. and showing us and insisting they were bugs. Now she washes clothes constantly! She pulls things out and washes over and over. She has run off two aides because she says they don't wash her clothes right and aren't getting rid of the bugs. She also has really dry scalp that get sores and scabs over. Now she thinks the scabs are bugs and scratches her head constantly. I could deal with all this, if it didn't upset her so! She cries about it all the time and says she just can't live like this and that no one believes her! This is compounded by the fact that she works constantly trying to wash everything, which exhausts her and adds to her anxiety. I've learned not to try to argue that there are no bugs, but if I agree her, then how can I get her to quit washing and scratching and crying?! I don't understand why this one delusion has stayed so constant! I keep hoping it will change, but I know another might be worse. I tell her doctor, but her doesn't offer any help. She has been on anti-depressants for years. I've read that there are some meds that might help with hallucinations, but her family doctor doesn't suggest anything like this. Should we see a Geriatric specialist? I hate to put her through all the initial tests that I have read they conduct.
I'm sorry this is so long. If anyone has any ideas, I'd really love to hear them.

Dear Arthur, sorry you are also dealing with this problem. It is too bad you are all so far away from your Mom. In my opinion, if she is in stage 5 or 6, she needs round the clock care. Have you checked into nursing homes?
My Mom has delusions too. In her case it is not bugs but seeing people, hearing people, hearing things that did not happen. Seeing people who have passed away. I call it 'false memories." she will tell me I saw so and so today and he said this or that - when this person died years ago. OR, she tells me people living in this building moved away years ago - but in reality they are still here.

It is hard. Except for a few hours a day Mom is never alone. I live with her and for 6 of the 9 hours a day I am away, an aide is with her. She also resents the aide and constantly criticises her to me, but is nice to her face. Mom believes she has already cleaned, washed etc so i have to use all my persuasive powers to get her to have a bath or put her clothes in the wash ..I have to sneak them into the wash, actually ..

Good luck! Maybe your Mom does need better medical care, ask a specialist.

Love and prayers,

Martha

Martha,
Thank you so much for your reply. I probably should not have tried to "pigeon hole" Mother in one of those Levels since she's never been diagnosed or tested, but those symptoms seem so fit her worse days. The thing is, she can carry on fairly normal conversations for short periods and fools a lot of people. A couple more questions... did your mom's halluciations go and come and change, or did they stay pretty consistent? Also, was she ever prescribed any drugs to help with these episodes? I have read on other threads that some people seem to think that their loved ones were helped somewhat by anti-psychotic meds.
My care manager also thinks that Mother needs someone with her constantly and I know deep down in my heart that this may be so, but she is so angry with us for interfering in her life and as she says, "treating her like she is crazy"! I think she would be better off in a nursing home, but the thought of trying to get her there makes me physically ill! She has always begged us not to ever put her in a home. To get her to go I know we would have to take her crying, kicking and screaming. All my life she has always played the "nobody loves me" guilt card when things didn't go her way and that guilt is so deeply ingrained that I can not even imagine how I whould survive the trauma have uprooting her and moving her to a home!
Thanks again. This is a great message board! I just signed up today and have already learned so much, but to be honest to hear what some of you have been through is more than a little depressing as I consider what lies ahead. But it is such a help to see how others have coped and survived.

Reading your post and I know how you feel. My mother is 63 and dz with vascular dementia and I also think she fits the level 5-6 but she lives on her own with 3 hrs of help. I live in the same town and check on her daily; some nights she sleeps at my house because I think her fears when she is alone keep her up which makes the delusions worse. My mother's delusion involves her house --someone is coming and she has to move out. Everyday she calls my house or my husband at work to ask for help because she is being kicked out of the house. She tells this to everyone she knows. The house is in my name and there is never any calls on the caller id. More recently, she says that her mother (who died 15 years ago) wants the house back. She gets worked up and says she has no place to go and they are kicking her out. She has even called housing places to ask about apt because she believes this....Everyday I tell her the house is mine; no one called....etc. and she will argue. I am SO TIRED of this .....some of her friends have stopped calling because of this...they are also tired of same thing. She is on antipsychotic meds and looks overmedicated to me....but I am scared to cut back because of how she is with the delusions. I have asked her doctor ( geropsychiatrist) about it and he just says ...this is how it is...just reassure her!! Like we don't ....I am now experiencing high blood pressure problems ....I understand how you feel. this disease is hard on all involved.

Hi, Arthursj,

I wonder if the "bugs" (especially if she feels they itch) might be triggered by some other health condition or imbalance. I don't know how common that kind of hallucination is with dementia.

Is your mom seeing a neurologist in addition to her primary care doctor? Has she had an MRI?

Pat S
(admittedly obsessive about MRIs)

Arthursj,

My mom has the same hallucinations all the time. They are different than your mom's, but can be just as difficult. The theme always stays the same. Actually I don't know if you can alter them. Sometimes the only thing to do is to distract them from thier current task. Unfortunately, being far away makes it all the more difficult. Maybe it's time for your mom to be closer. Even though moving your mom to a home sounds almost impossible, maybe if you went and visited some of the places near you, you may find one you like. Your Mom may even enjoy the company of other people like herself (even though you would never tell her that). Keep in mind, a lot of nursing homes cater to people in further stages than your mom. Maybe you can find placement where there are other people at her same level.

My mom was always the mom who could inflict guilt and I was a puddy in her hands. Some of thier natural traits remain for quite some time. Also, my mom still on good days can hold a conversation and baffle people when I tell them I slept 2 hours last night because my mom was wandering around not knowing where she is, or tells me when she is watching TV "It must be so hard to live in that box all the time!" The stories I have are endless as so are probably everyone else on this board.

It is a difficult illness and confusing for thier families. Sometimes you wish there was just a manual you could refer too that would give answers, but everyone is different and the things they do vary as much.

There are no easy answers however, in time your mom will not beable to constantly wash clothes she will probably move on to a new hallucination. Hopefully, they will be one easier to handle as thier abilities decrease.

Take care.

Hi Arthur,

If you've read many posts, you've "met" me. I'm Barbara and am sorry you need to be here.

My widowed mom was diagnosed w/ dementia at age 84. I showed her doctor the 7 stage of Alzheimer's model that I found on-line (and is here) and said I saw signs of levels 4 to 5. You're right, it's an estimate and fluctuates, but (sadly) is always and steadily downward. Mom's doctor acknowledged she might well have Alzheimers and that's what he called it from then on.

I lived even farther away than you and your brother do. There came a time (you can read the details elsewhere here) when I told mom that for her safety and so I could be sure she was eating well and taking her medications correctly, she could no longer live alone at home. Over her tears and protest, I moved her into an assisted living facility where she had a sunny apartment with her own furniture, 3 meals a day, three long time friends, and free rides to grocery stores, banks, and doctors. I took her house keys and car keys to Texas. She and I cried together, but I knew she was safe. She adapted well.

For a few weeks after she had lost even more abilities, she did repeatedly see her sister who was dead. No bugs.

I suggest you have your mother tested for allergies and other problems that can cause itching, dry skin, and for imbalances that can cause hallucinations. There is a good chance that she's taking any prescription medications wrong, too. She may take too much or not enough. That's worth investigating.

Perhaps you and your brother can make the best of this sad situation by moving your mother to an assisted living facility near you. That way, you could visit more often. If it's Alzheimer's, she won't remember her friends or her house for long. Sad, but true. I worked off my guilt by painting with stencils in my mom's new apartment.

Ignore the "no one loves me" trump card. If she has Alzhiemer's, you cannot change her problems. You can only keep her safe. That's how you can show you really love her even if she doesn't realize it.

You're not alone on this unwelcome road.

Wishing you well, Barbara

Hi Arthur,

One other thing occured to me in the middle of the night. Impaired kidney function can produce odd behaviors and also itching skin and other skin changes. You need to ask your Mom's doctor about that possiblity and have her checked.

Take away her laundry detergent and give her a baby detergent like Dreft or Ivory. If she's suddenly allergic to that soap (or so much of it), the more gentle soap might help.

My mother constantly folded Kleenex. Maybe if your Mom really is itching and that can be stopped, she'll also stop washing the clothes.

Hope you find a key to helping her! Good luck - Barbara

OMG! Thank you all sooooo much for your input! When I got to work this morning and read all your replies, I cried! I'm sure that you all must know how comforting it is to talk to people who understand what you are going through! My friends are wonderful, but the whole thing is really hard to describe to people who have not dealt with it. I can't even wrap my own mind around it, so how can I explain it to others.
I've read your replies over and over and my thoughts and questions are just bouncing all over the place. Let me try to hit on a few.
Barbara, I was relieved to hear that your mom also resents her aides, as this is really an issue for us. Mother has been so ugly to two, that they quit.
Dolores, Gosh your mother sounds so much like mine. Mother, also has just started to be confused about who owns her house. She questions me about it occasionally, but has become obsessed with... yet! You mentioned the anti-psycotic meds. Did you ever see any "improvement" or are you just afraid of how bad it might be if she stopped taking them? I also see that your mother goes to a geropsychiatrist...Did he do alot of tests initally. I keep wondering if I should take mother to specialist, but it really seems to me from what I've read that there is not much they can do.
Cindy, You are so right about their traits staying the same! My brother and I keep saying that it's like Mother's worst traits have just been magnified! You expressed my feeling exactly about the "manual". I just keep looking for answers, but there don't seem to be any... at least not any I want to hear.
Barbara, I would love to read about your experiences with actually moving your mom to the assisted living facility, if you could tell me how to find that thread. This is what I know I must do, but what I dread the most. I know she is going to hate me for it, even though I know it is the best thing. I really have to go check out the available facilities because I assumed that in her state the type of assisted living facility that you described would not take her.
As to the responses about allergies, etc. I appreciate those as well, however we did take her to a dermatologist. He explained that her sores were not bug bites, but dry skin and gave prescription shampoo and creams. Of course she didn't believe him and got mad. She gets very angry with all her doctors who don't "fix" her problems and say they aren't trying to help her. We have already changed doctors twice to pacify her.
One more thing.. do your loved ones cry a lot. Mother has started crying alot lately. I asked her doctor about increasing her antidepressant, but he says if it is caused by her confusion from the disease that increasing the antidepressant will not help any.
God bless you all for taking time to help others as you go through your own individual "nightmares". I wish I'd wake up... how about you?!
As to

Thank you all and God bless you.

My FIL(father in law) sees BUGS well thinks he does..and is so convinced they are real..Tells his wife she's crazy for not believing him..he also sees the dead family pets,cats ,dogs...it's very hard for MOm to go along with it..we tell her to just go along with it instead of arguing since in thier minds there right..she cnat seem do do it so they argue alot..We are alomost certain Dad has Alzhimers or Dementia..but he wont and hasnt been to a doctor..truly is stressful...to say the least..

Betsy, I'm starting to feel like maybe I need counseling to learn how to handle Mother better. I can really sympathize with your mother... I have a hard time going along with some of Mothers delusions also. I can do OK for a little while but when Mother starts berating the Terminex men for bringing bugs in the house, I lose it! Honestly, I don't have the patience I should have. I try to explain everything I do to Mother, but 30 minutes later she'll be yelling at me and saying we don't tell her anything and are doing things behind her back. I usually end up arguing with her, which I know is useless but I can't stop myself. It just seems like such a waste of time and if I go along with the "bug" thing I feel like I'm just encouraging her! She'll pick up a piece of lint and stick it in my face and say, "see here's one!" If you and your mom have some epiphany about how to handle things without arguing, I'd love to hear it.

Hi again.

Glad our stories give a little comfort that you're not alone in this crazy boat. You can find some of my posts on Sidney's "I don't know what to do about Dad", p2 and on Mustang Sally's most recent post, p5. There are many others scattered on other posts. Do read through them all as you have time and energy. There are lots of good ideas for coping.

When my Mom used to say she saw something that wasn't there, I'd just say "That's interesting" or something else non-contradictory. Correction, clarification, and contradiction are useless. All of the "teachable moments" are gone. Agreeing is not encouraging because she's not lying or misbehaving. Even if your mother acknowledges she's holding lint - no legs, no head, no wiggling - she'll forget it so quickly that you'll be starting over the next time. Don't beat yourself up about this. You just go with the flow, then change the converstaion. Like say about the bugs, "Oh, I wish the bugs would leave you alone. They must be annoying. Maybe if I rub this lotion on your arms it will feel nice." Smile and laugh when possible. Long after Mom had forgotten I was her daughter, I once said, "Guess what Mom? I'm your daughter!" She looked so blank and replied "really?" Then we had a good laugh. It's often laugh or cry and laughing helps.

I cried enough to feed a river and sometimes early on, Mom and I cried together. Mom did go through a month or more of crying much of the time. She assured me she was not sad or in pain, but could not stop crying and she found that annoying. She'd never taken anti-depressants, but her doctor put her on a mild anti-depressant (she was a tiny lady) and the tears stopped.

I got myself 2 Mary Engelbreit mugs: "She who laughs... Lasts" and "I'm fine...Really I'm fine...Just fine" and those helped me keep perspective.

I do encourage you to insist the doctor check your mother's kidney function if it hasn't been done since she's been itching and washing clothes repeatedly. What it could be is renal failure and the kidneys aren't filtering the blood sufficiently and the circulating waste products are sweated out onto the skin and deposited in the brain. I'm no doctor, but this seems worth checking out.

Good luck! Barbara :)

Thanks for the encouragement and the advise about the kidneys. I will be sure to talk to the doctor about this.

Arthursj,Hi...well dad started again with the bugs last nite..he thinks the bugs talk to him too..I laughed at your comment about picking up lint and your Mother being convinced its a big,Dad did hat too but with bread crumbs...Well Dad was home alone yesterdayand he tried to mop the floor(he made a mess) and it looks like the mop and he got into a brawl..he has a bruised nose and a cut under his eye..(broke his glasses too) Mom stayed home with him today and missed work..she said he talked nonsense all nite..he believes he's not even at home..and is always telling mom they have to leave and get home>I dont have any suggestions on how ot better handle it or avoid arguing because Mom has he same problem with dad,she cnat help but to yell at him...thats my vent for the day..thanks for listening...

Hi Betsy,

Since you Dad is already disoriented, unable to be left alone safely, staying awake all night, and wearing your mother out, might it be time for him to be moved into an assisted living facility or somewhere nice where there is a night staff? My widowed mother often kept the night staff company as she wandered the facility at night.

Mom benefitted from the routine, people to talk to, good food, and the staff gave her medicines to her so they were taken correctly. She was certainly watched over and safer than if she'd been at home alone.

There comes a time when the safety of the patient and the caregiver's deep fatigue make it best for the care to be entrusted to others. Maybe this isn't that time for your father, but your mother will need help sooner or later. Sad, but true.

Wishing you well - Barbara

Barbara..I would love for DAd to go into a assited living facilty...he wont hear of it..we argue about it non stop...and without him going to see a Dr. to first sees what all is wrong with him we cant get him into a nursing home..he is truly one of akind and had never gone to a doctor,its been like 50yrs.. he is probably the stubbornest(spelling?) man i've ever meant..infact I argue wiht mY husband since it it HIS father that he eeds to do more..I think My hubby is in denail about his father's condition..anyways everything your saying it true and I agree but it's simply not happening ..yet anyways...I feel like when he has no choice but to be taken in say his falls and breaks a hip and has to go into a hospital thats what it's gonna take it seems in this case..I would have called 911 on him a long time ago if it were my father..Alice his wife also worries about all the money a assisted living facilty will cost...which we know it wil be very expensive...

Hi Betsy,

Bummer! You DH isn't doing his Dad or his Mom any favors by pretending all is well. Denial is nothing new, but no less aggravating. Mark Twain is quoted as saying "Denial isn't just a river in Egypt."

Maybe you and your bedraggled MIL can have a girl's Saturday out and have DH stay with his Dad (don't want further mop vs. Dad injuries!!). DH would likely sing a different tune at the end of that enlightening day. Better yet, have him stay the night. I know my Mom was less oriented after dark in the early stages.

I guess if your MIL is agreeable, you can always call 911 for his "chest pain" and tell the EMTs "don't listen to him, dementia, you know". Show the swollen ankles as an indication of heart trouble. He'd get seen be a doctor. Maybe not for long, but maybe...... maybe he'd have a working diagnosis and maybe even some pills to help. That's extreme, but your MIL probably needs help and you don't want to wait until he burns the house down. I took all of Mom's small aluminum and metal pans away and left only the ones too big to fit into her little microwave. It's something to think about.

Are there other kids in your DH's family? Maybe you and your MIL could enlist allies!!

When someone is elderly and has lost his marbles, his vote doesn't count. What kind of fit could he pitch at his age and state of health?! Maybe you can find a doctor who makes house calls?! Maybe an aide could be hired to stay with him during the day?

Wishing you well - Barbara

Hi...we brought up teh idea of a house call dr..and a home care nurse..dad was dead set against it..My Dh definetly needs so spend more time with his dad..I tell him that daily...also I do have girls nites with my MIL .i'm also her taxi service as Dad can certainly no longer drive..I take her to work..bank,grocery store..salon etc Hubby is a only child so there's other aides to help...Spoke to MOm tonite she said..dad was doing ok..he seems worse during the nite..talking in his sleep and roaming around..waking mom.Were in MN so luckily with our weather(snow) although this winter has been mild..dad stirs clear of the cold and stays inside.. so far anyways..

hello from ontario canada, sorry to hear about your mother ,it is truley sad to see the one you love in this state, and i commend you for sticking with the ever demanding task with which you were given...i didn't see any mention of alzheimer's disease, a good calming / relaxing medication is alprazolam.. check with your doctor first..good luck

The scary thing is how sick the caregivers get. I see many references to high blood pressure (my 'blood boils' is the psychological interpretation, insomnia, and muscle soreness, even a stiff neck (I've had it up to here!) all are an outward expression of the inner feeling "I can't cope with this any more!"

Then I wonder like many of you if this disease is hereditary and not just a function of extreme age, and if I am going to get it too.

It is clear that our society has to make better arrangements for this kind of care. Why does it have to be more expensive than a hospital stay for, say, a heart attack, and why shoudn't Medicare cover it (custodial care)? Why are degenerative diseases of the body covered, but not life altering diseases of the mind?

If my Mom were not in a prescription medication insurance plan for people with very low incomes, she would not even be able to pay for her medicines. I paid $80 last time, and when I complained, the druggist told me the full price WITHOUT her insurance was over $500.

Alzheimer and all the other dementias seem to be on the increase these days, first because we are all livng longer,and then, I wonder if the air pollution, chemicals in our foods, hormones in our drinking water, years on 'the pill' and HRT, popping a pain pill for every twinge, etc etc are also not playing a part.

None of this helps us as individuals, of course. Our only hope if we cannot afford custodial care is to spread out the work load a bit thinner, with ALL family members doing their fair share and/or paying for outside help. I fear that this expense lies behind the general 'denial' of this disease...Mom is fine, Dad is actually fine, Brother is not ill, stop complaining, its not him/her it is all YOU .... you are whinging, impatient, or impossible to get along with. In my case I am called all of the above by certain people in the family...

Love,

Martha

Sorry I hadn't had a chance to get back on but this past week has gone from bad to worse with the house obsession. Today I got home and had 26 messages on my machine from 1:30p-5pm...all from my mother. It's been nonstop. Anyway, the psychiatrist did not do alot of tests. He put her on risperdal and an antidepressant over a year ago. He has increased the amount on a couple of occasions --at my insistence. Actually, I increased it by .25mg 2 times a day because it was out of control and she was asking for help--she would say she didn't like how "nervous" she felt. It did help and althought the dr. does not like my initiative --he did agree and change the dose. She was on a very minimal dose. She did well on this for several months. We had to increase it again about 6 months later and again we saw improvement--it really cut down on the "house" obsession. She is on a small dose relative to what is recommended. Re: being scared about reducing doses --YES! I am scared it would worsen. My mom is also on Aricept and naminda (alzeheimer's meds) and I have wondered about taking her off.---don't feel like those help anymore.

I am concerned about the risks of Risperdal (some studies say elderly at increased risk of strokes) but I feel like she needs some relief from her "nerves-as she calls it". She seems more at ease when the meds work. I don't know what is going on now. It's only been 3 months since the last adjustment. I guess they grow tolerant.--i don't know

I feel your pain and sadness. All we can do it take it one day at a time. I don't know what you think about anti psychotics but at this time (at least from what I have read) this is all there is out there.

Take care of yourself!!!

Dolores

My Mother has delusions as well. She calls me every other day saying the police are putting her away and she does not know why. Also, she has conversations with people in the walls, roof. Her doctor says that is something we have to live with.. She cries alot and I hold her, which in return makes me so depressed and sad.. My father yells are her and upsets her even more. He tries to tell her the people are not there and gets all upset. I told him to just agree but what can you tell a 82 year old man. HE is in denial. My heart goes out to everyone who has a family member that took away your loved one. THis stranger that came one day and took them away I call ALZHEIMERS. God Bless Us All