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I've been MIA for a few months but I am really at a loss on how to deal the heavy impact Mom's hallucinations are having on her emotionally, psychologically and, even physically. So I'm looking for advice.

I understand Mom's reality is valid to her. Unfortunately, she believes her hallucinated "kids" are disrespectful, disobedient, and refuse to give her information she is demanding. She wants to know a phone number where their families can be contacted, a family name, an address, etc. She gets angry because "they" can be gone for days at a time and she can't control what happens to them and she doesn't want them to be in any trouble.

These things upset her to the point that she goes out - with purpose - not "wandering" - looking for these kids. At this point, she may get a block away and then realizes she has no idea where to look or even "who" she's trying to find as she doesn't know any names.

I am afraid for her and I can't be there physically. We do have in home care part time (which is all she will tolerate right now). The CG is aware of the problems and tries to help. But......

My siblings and I are in agreement on a lot of what we're doing. We are equally confused on what to do about this particular concern.

We made a decision to put moving Mom against her wishes out of the picture because we all agree, taking her out of her familiar surroundings will deteriorate her quality of life rather than improve it. She doesn't do well in unfamiliar surroundings. We have proof positive of this. If she can't be doing the dishes or cleaning windows, etc., she has no purpose in life.

Any comments and advice will be most appreciated.
Thanks. Carolyn aka Bee

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Hi everyone. I have read all the comments and agree with much of what has been said. Our observation, at this point, is that Mom ventures out looking for the "kids" in frustration. Then she realizes she doesn't know where to look and returns home, really angry. Generally, I speak with her shortly after she's realized she doesn't know where to look. So, we don't think she is "wandering" yet. We do, however, consider it could become a problem. And the CG's hours are scheduled based on Mom's patterns of cooking and looking for the "kids".

We have toured facilities with the intent to move Mom for her own safety. My sibs and I came to the same conclusions. At least, in our opinion, none of the facilities we toured will take Mom on her own terms.

Mom's meds are for her AFib and we've reviewed them many times with both the PCP and the cardiologist over the past year. Nothing she is taking should cause the symptoms (according to them and my own research).

I liked the situation where psorre's Mom thinks she's helping at the ALF. Mom would probably fit in well under those conditions. None of the places we toured seemed to have that much "personal" touch with the residents.

As for her physical health, I have had her tested for UTI several times. She gets mad at me for being "in her business". Her primary is a geriatric but refuses to refer her to any other docs because she has, so far, cleverly avoided his questions. She did test with Mild Cognitive Deficiencies back in January. If it were not for me, the PCP would not even have tried the Exelon Patch! (I don't think it's doing much, but it was worth a try.)

In my uneducated opinion, we're past the "mild" stage. I base this on Mom's inablility to balance a checkbook, confusion when she receives her normal bills, and the number of times she's misplaced her checkbook and a variety of other "important' things. These are not the only symptoms, but you get the idea.

My major concern is, as I said, the emotional impact the hallucinations are having on her. Unfortunately, I live 8 hours away from her and I am longer licensed to drive due to vision problems. Getting Mom to go to a new doctor has been, so far, out of the question. She just won't go willingly and I can't physically throw her over my shoulder to make it happen. lol

We've increased the In Home care time - which she resents. The only real impact has been that the CG is able to "unset" the table which Mom has set for the hallucinated children and adults.

You see, Mom raised 5 kids. She can't just hallucinate one or two kids. She needs a whole household. She even gets her parents in on the party.

I agree, we probably need to get her to a geriatric psychiatrist. I don't know if I can make it happen, but I can certainly try.

Thank you all for your thoughts and insights. I am rereading everything offered and will put what I can into action. As JeanneGibbs said, we share, we research and ultimately finding a good doctor can be key in knowing what to do. I pray we'll get there soon.
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Thank you so much, LaurieBenson, for sharing the results of seeing a geriatric psychiatrist. We can share with each other what has helped our loved ones, and we can research on the Internet. But there really is no substitute for consulting a doctor with the appropriate specialty for the problem!
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I agree with looking into long term care as the situation will only get worse as it goes on. My Dad is adjusting fine to his new "home" - he has friends there that he can discuss his fantasies with and although he has some scary ones, there is always someone who can help him settle and give him a "warm milk" which always seems to help. He also had all his meds checked by a geriatric psychiatrist, who said that some of the diazepines can cause "waking dreams", so he went to chlorazepam from lorazepam and another tranquilizer and is much more cognitive. There are other brain drugs available now to boost alertness which can help keep them from slipping into fantasy. The tranquilizers can be the worst for hallucinations, as can urinary infections and other small infections, strange but true.
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Hi bee - good to hear from you, I have to agree that you need to keep an open mind about care for your mum in the future. Physical safety seems to be an issue which is becoming more important. You say you are afraid for her. Listen to yourself. It is a very difficult situation, no doubt, and your (subs included) judgement is being made on the premise that "taking her out of her familiar surroundings will deteriorate her quality of life rather than improve it". Consider what scares you about mum going out looking for these children. I do think it is wandering, as she has no firm direction as to where to find them. Something could happen to her that would seriously affect her quality of life. Like others who have been written about here, your mum may adjust to a facility, and she would be physically safe. I know the idea is not appealing to you and your sibs, but please don't rule it out. Perhaps a change in meds, treatment of a UTI, increased supervision etc will solve the problem for now, and for as long as she lives. But, perhaps they won't.
((((((((((((((hugs))))))))))))
Joan
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Carolyn, what a hard spot you are in!

First, do have Mom checked for uti or other infection.

Also talk to her doctor about hallucinations and delusions. Given her particular circumstances and other meds she is taking, is there any medication worth trying?

You are probably right, taking Mom out of her familiar surroundings will deteriorate her quality of life, at least on some levels. And you are probably right that increasing the in-home help hours will upset Mom and create distress. And certainly going off on her own to search for delusionary children presents risks that could drastically reduce her quality of life. You are between a rock and a hard place and there are no ideal answers.

I am so glad that "we" (you and your sibs?) are discussing what is best for Mom. Keep an open mind, and realize that new decisions might have to be made as circumstances change.

1. See if anything can be done to lessen the hallucinations and delusions.
2. Increase the length of time she is supervised.
3. Be sure she has an ID braclet she will wear all the time.
4. Keep an open mind about future decisions. Unfortunately she is approaching the point where what she wants may not be compatible with what is safe.

My heart goes out to you!
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What a difficult scenario. I understand you and your siblings not wanting to move your Mom, as it would be too unsettling for her. It's so hard to know what's best. Psore's Mom's moving experience sounded so good. But I'm afraid my Mom, like Mccammy said, would become withdrawn. I tried her in a really nice independent living community, with many beautiful halls to walk, and a lovely dining room. She only stayed in her apartment, and called me all the time wanting me to come and get her, and was very lonely. I finally have her living at our home, in her own separate quarters. She sees people, and one time she had "overnight guests" entertaining them with tea and sandwiches while we slept and heard nothing. (imaginary tea and sandwiches) but she had set her table, and moved chairs around to accomodate the guests.
I'm wondering if, in your Mom's case, since she is asking for the names, addresses, and phone # to get in touch w/ these imaginary children, you could give her some fake information for her to contact these children to make sure that they're safe. You could skip the phone #, as that could get to be a problem with someone having to answer a bunch of calls whenever she got in the mood to check on them, but if she could write to them somewhere, and they could respond with a letter saying they were fine, but lived too far away to come visit, but they could send cards periodically saying they were well, and hoped all was well with her. They could say they had no phone. (They could all live together somewhere?) It sounds crazy, but maybe you have to fight craziness with craziness, and it might help ease her fears. I don't know if this would be solution at all, but worth a try? It's difficult to get through to them that this is all in their head, as they keep forgetting, and the hallucinations are extremely realistic. Best of luck. I can empathise with you so much.
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My mother and I have the same conversations. She "sees" a little girl who has become the scapegoat for everything in the house. If something is missing, she blames this girl. She worries that she doesn't know who the girl's parents are, or where she lives. She also "sees" her deceased mother. Often, I'll take her shopping or cook something, and later she'll tell me that "Momma" did it.

She'll make sandwiches or put out cookies for a bunch of people, and I'll have to explain to her that they can't eat, so she shouldn't bother making food for them. I also tell her that these are her special friends, and even though she can see them, I can't. If she's upset that they disappear without warning, I tell her that they can't control when they come and go, and that she shouldn't be upset. It placates her for a bit.

She lives alone and I live nearby, so I'm usually at her house 5-6 times a week for multiple hours. It's becoming very overwhelming and I'm looking into p/t home care for her. My mother has lived in this house since the late 50s - it's like her North Star. She has no desire to move, and if we did so I think she would just become withdrawn. I envision having home care for a few years so that she has company (I work full-time and cannot be with her during the day) more often during the day, and eventually moving her to an assisted living living facility with memory care.
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I have been going through the same issues with my Mom. She wants to go looking for her "little girl" and does when she is alone. She goes all over the neighborhood and has been lost in her car out looking. Neighbors call me continually with concern and with Mom at their door. I have been staying with her in the evenings and at night for the last five months, and she does the same thing to me. I literally have to stand in front of the door and keep her from leaving. She has hit me, pushed me, told me she hated me, not to ever come back, I'm not her daughter and on and on and on. She is also like your mother and always busy doing something around the house or yard - no longer useful things I might add, just busy work.

I finally got to the point I couldn't do it any more. I couldn't see my Mom the way she is now and couldn't stand to be treated like she was treating me any more with absolutely no help from my brother. And my husband, one of God's truly good men and such a help, wanted his wife back. Working full time and doing what I was doing was wearing on me emotionally and physically. I finally made the move about a month ago and moved Mom to assisted living. It has been great.

She thinks she is helping around the assisted living facility, and she does help clear the table after meals and other things. Because she wants to, not because she has to. They are wonderful to her. She still has issues - she's not cured - but she's safe and relatively happy in her new environment. And I feel like the weight of the world is off my shoulders. I worried about her constantly. When she was alone (she ran off all the caretakers - threw things at them, threatened to call the police, etc.), I worried about what she was doing. Wandering the neighborhood? Safe? When I was with her, I worried about what she would do next, I couldn't sleep well listening for her to get up to go find her little girl. Now, she is SAFE!!!! That is my main contentment in all of this, the hardest decision I ever made. My Mom isafe, and she treats me like her daughter again. I had the same concerns as you about not moving her because she is always busy, would be unhappy, etc. Wow, was I wrong. She went to the mall every day to have lunch (normally took some concotion she made up) and walked. Now she walks the halls of her assisted living facility and tells me she goes to the mall every day. Good luck with your Mom and the decisions facing you. Such a difficult time.
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I agree about having your Mom evaluated by a physician. My husband has Lewy Bodies Dementia and a common symptom of this illness is seeing imaginary beings, typically children and small animals. In his case, the children aren't bothersome to him and if I remind him that they're imaginary, he understands that. But, he still sees them and they're real to him. He now lives in an assisted living facility for folks with dementia and fortunately, it's an excellent facility where he receives good care. Although caregivers are often hesitant to take this step, I feel it was the best decision I could have made for him. They offer him lots of daily activities and social interaction, which I believe is keeping his mind and body more active than I could have done at home. I wish you all the best in your journey with your Mom.
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It would be helpful to have your mom looked at by her primary care physician to rule out any medical issues - some such as UTIs can cause hallucinations. If there is nothing found, an evaluation by a mental health professional who specializes in the elderly may be able to help with medications. There is a good chance that her condition could get worse: she becomes assaultive or the visions/delusions become more disturbing to her or you.
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