Hallucinations vs. Memory Loss

Hi Sloegin...This has been hard, I was reading your story too, and I can only say I hope you find peace too. It sounds so stressful. One thing that is really hard for me is that my dad is not and does not want to be a caregiver to my mom. It hurts that he is so selfish. I was relieved when we found this nursing home because even though it is not what I think is the best place for my mom, I know that she will be cared for everyday. When my mom was at home, my dad basically ignored her. He got frustrated when she stopped being able to do things, and he started to resent her..things like...he would stop getting groceries for her because he said it was just a waste of money because she didn't eat them...in reality, she needed someone to help her and encourage her to eat, she couldn't make anything for herself anymore. But he ignored it. I finally made him hire someone to come to the house everyday to check in on my mom as he was out "living" his life...he goes on long bike rides, overnight trips to places he likes, visiting his friends without my mom...I was and still am furious with him. I know that families can be torn apart from things like this, and it is true for me. I can't find a way to forgive my dad for his ignorance and selfishness. So, when my mom seemed to be advancing to the next step in this horrible disease, I hated that she would be living in a nursing home, but I know it is better than what my dad could ever do. I would love to move my mom to a facility closer to me in Texas, but I have no idea how to do that. I am researching it, but it seems very difficult. I feel horribly guilty that I am not able to help more, which is why I am trying to see if I can get her closer to me. My mom is not bedridden, she is what they call a "walkie-talkie" where she walks and talks nonstop for days at a time, until she drops from exhaustion or the drugs kick in. She was once up for about 5 days! She has complications from all this...her feet and back are a mess. The drugs are helping a bit, sometimes helping, sometimes making it worse, but I hear that is the process to getting to a balance. My mom was admitted again to the hospital on Friday because the nursing home thought there was something more wrong. Since she has had pneumonia once, they are worried about infection again. It was another one of those crazy family moments because no one knew she was sent to the hospital. The nursing home called my dad and he never answered the phone. In the meantime, the nursing home lost my phone number, so no one called me. I found out after my godmother went to visit my mom, and found out she wasn't there. But it started another discussion with my family, do we want my mom to hospitalized at every sign of infection? That is our next decision. I am torn about the whole quality of life issues and we know my mom's wishes, but she never formalized them, so the decision falls on us as a family. My brother lives closer to my mom, about 5 hours away, we try to make decisions together. And my godmother is just that, sent from god, she has been the only one who has been able to visit my mom and make sure she is getting everything she needs when she needs it. I rely on her to be my eyes, but I know this is not the role she wants...again, I can't get rid of the guilty feeling.

This website is wonderful for sure....You will find lots of information to help you through this horrible disease....How does your dad make it without your mom there? Is he in good health and does he visit her? The long disance thing is tough...Is your mom totally bedridden? I hope the drugs continue to help her...it's such a learning experience....some days drugs seem to work, some day mania, some days total delirium, hallucinations....sleep....We are all listening Tracy! many other articles on this sight also....Bless you all in this most trying of times...!

Hi everyone, I am new here...I just wanted to say I can relate to everything that you are saying. My mom is 68, so so young, but we had to put her in a nursing home this January. She resisted diagnosis early, and just got angry with anyone who suggested she had mental health problems (that was going on for about 5 years). I was the first to notice that she was showing signs that something was wrong. She was good at hiding her symptoms too. I think that must have been the hardest part for her, in the beginning, knowing and yet not knowing what was happening to her. Now, she is pretty advanced ALZ/dimentia. She goes through everything memory loss, confusion from moods, anger, accusations, really really bad sadness where she cries all the time, hallucinations-- she has conversations with pictures and objects, you name it. But then she has moments of happiness and some clarity. Drugs have been helpful, since she is in the nursing home, they started her on several...Nimenda, exalon, and risperdal at night. The doctors told us it will be a slow process to figure out what will work best. I am so glad to find this website. I have so many questions. One thing for me, my mom lives in NJ and I live in TX. So it is a blessing now that she is in a nursing home. She was living with my dad, but he was the worst caregiver ever (that is a totally different post for another day). Same with how my mom got in the nursing home (she developed pneumonia, and was in ICU for a month...we wanted her to go home, but there was no way after that, I think it seriously advanced her ALZ.)...well, thanks for listening.

Tracy A

Rden, I am glad you are going to let me know about the trazadone results you have with your mama....it's always good to see what others have tried...Your mom being so dependent on your dad is tough....on him for sure....If he won't consider having her put in assisted living (many are VERY nice) at least convince him to have sitters so that he can get away a bit...if he has family, brothers, sisters whatever, he can spend time with them..What is probably hard on your Dad as it is for me, never having your home! I would give anything to have my home to myself for a week....just to do what I need done without anyone around! It is great that your mom tries to help on good days....oh brother, lots to think about always.....Take care .....let me know about the trazadone! Thanks!

We live in TX. Thankfully, by the time my mom needed to be in assisted living, she had a major psychotic episode (part of her mental illness prior to onset of dementia) then she became fearful to live alone, so she went willingly. My dad died a few years before. We didn't have to force her. I know that is a blessing that not everyone in this situation has.

I know all of your fears about assisted living facilities. I even asked Mom's counselor how I would know if she wasn't being treated well and she said that there would be obvious signs. I am in close and constant contact with the nurse on staff and the director. I can tell by the things that Mom says that she is being treated kindly...last week without the least bit of embarrassment she said, "Guess what I'm learning this week! How to pick out my own clothes!" Also, she does not have just one primary caregiver there without accountability - there are patient assistants, an RN, geratric doctor that makes "house calls" every week, a geratric psychologist and geratric neurologist that are also available on-site once a week, occupational therapists, physical therapists, etc. In this respect, I feel like we have won the lottery.

Now my mom has forgotten my dad for the most part, can't remember my brother or her grandchildren most of the time and I think sometimes to her I'm just a person who makes rules.

She told me the other day that she has a new hobby...she opens her address book and calls people and asks them how she knows them. My sister-in-law of 40 years was quite surprised to get a call.

She goes to yoga classes for the first time every day, she meets her doctor for the first time every week, she meets her neighbors for the first time every day. If you ask her, I won't take her to a doctor and I never call or come over, but she's happy enough in her confusion.

A few years ago this would have made me incredibly sad, but you learn to just be thankful for her peaceful moments.

That's an idea, sloegin!!!!! We really need to think of a reason to tell her. I feel for you that your husband is bedridden on top of dementia. I need to remember to let you know how the trazodone is working during the day. It has only been 2 days. The new drug-Risperital sp? has horrible possibe side effects, but is to be used only when they get manic.....I had to laugh about how true it is that they are so self absorbed. When my sister and I help we feel like we are on the move the whole time. She's hot she's cold, she's this she's that. Some days it's pure misery!!! I know it's the disease for sure, and I have learned to go w/ it and have patience....I can't help to try to figure it out when she's says something totally crazy or asks why these people are in her house. There is no-one there, just hallucinations. In the next breath she says something totally relevant. the Dr. said to stop trying to figure it out, because there is no rhyme or reason...haha
I am always trying to figure things out. How ridiculous.......
I have to say again how nice and comforting it is to hear how other people are handling there situations!!!!!!

Elizabethgrace- Your mom sounds similar to mine. It's funny, my mom loves to fold towels, she calls them diapers. I just don't know how we will get her in a home. She is attached to my dad (always was) like glue!!!
We feel she still knows too much. ie; she says she doesn't want to go into a home...she loves her house.....she tries to wash the dishes, (the silverware drawer was all mixed up, she thanked me w/ a smile after I organized it) wipe the counters off, and still hangs up her clothes, sometimes they're inside out and upside down. This was a good day. The next day (maybe today) She can be down right mean and hateful....She says to not boss her around that she is grown woman, but yet, she needs help.....Her house still looks tidy....amazingly.......On bad days, she may have 2 diff. slippers on and there may be a few of her clothes flung around in frustration.
We feel this wouldn't be quite as hard to move her if she wasn't so dependant on our dad. Not saying that it's easy to move anyone out of their home......but yet, this is killing our dad.......
You say assisted living, that sounds good. Do they have a skilled care unit when needed? May I ask what part of the Country you live? I live in PA......
The scary part is the workers in these places, some are caring and some are down right uncaring and the patients are just an annoyance to them. I've seen people in homes calling to go to the bathroom to be put off for hrs. etc. this is scary. If I knew my mom was going to a truly caring place it would be a much easier decision.....appreciate the support!!!! Take care to all!!!

I just know that this disease progresses, and that's what we all have to remember...they may seem better for a day, 2, maybe a week (when I say better, I mean not manic, in my husband's case) He is totally bedridden from stroke, heart probs, but his mind is what is getting to me the most....it's hard finding the right combo, and the doctor and his daughters see him for VERY limited time, and he has sense enough to figure out just NOT to talk to those people! I have asked the doctor for more seroquel (remember their minds are tortured, they think the things they are thinking are true!!) trazodone during the day? Hadn't considered that....he had 2 great weeks with the first doses of seroquel, but I guess either the disease is moving forward or he has gotten used to the initial seroquel!!! The aricept, does that do anything for mood? I just don't want him tortured mentally, nor do I want the eternal torturing!!! Just wake in the morning hoping it's a GREAT day for the help and for me and for him!
You can tell a dementia person lots, it's just what will they accept! Or believe....! Maybe bring the girl in, let your mom meet her, let mom think she is just a person that wants to be around, not being paid, and just loves helping your mom.....? Of course you pay her, but tell mom that she just wants to help cuz she loves your mom...they (dementia) think they are the only ones in the world anyway, so telling her the girl wants to be with her cuz she cares, may work.....My husband thinks that of a couple of the ones working here! Try whatever to help your poor father....I am not old and this is the most trying thing in the world....stress is a killer, watch your daddy carefully...he needs you!

Finding the right combination of drugs has been quite a challenge for the doctor. She is as stable now as she has been in years. Although she is confused and her memory is pretty much gone, she's much more peaceful now. I will tell you that getting to this point was a trial. You have to give everything time to prove whether it is working or not and that is hard to do when everything is spiraling out of control. And I've learned to just be happy for the moments that she's happy or content, because 30 minutes later it can all fall apart.

Her assisted living facility has been wonderful. The staff is caring and keeps me informed, as well as educating me on how to talk to her. You asked if you can say some things to people with dementia - and I didn't know whether to laugh or cry for you. I've said it all - the good, the bad and the ugly - in my frustration and pain and fear.

The (geriatric) psychologist that visits Mom twice a month has helped me greatly with this. She said that Mom feels out of control and wants to feel useful and capable. So I am to praise her for whatever success she manage - even if it is something as simple as managing to put a bracelet on herself. When Mom visits me, the psychologist said to take all of the towels out of my linen closet and pile them on the bed and ask Mom to help me by folding the "laundry". I thought that sounded condescending at first, but in my desperation I tried it and she worked on that pile of towels for 30 minutes and I heard her singing as she did it. She smiled when she showed me her work and when I thanked her for her help. It was so bittersweet that I wanted to cry.

I'm still tempted at times just to tell her the truth when she's irrational and angry and defiant, but if I can just step back mentally from the situation and look at it without taking it personally and approach it that way, then she settles down quicker. Notice I did NOT say that it is EASY!! :) If I remain calm, the situation does not escalate as much. But it is hard to take when your mother looks at you and talks to you like you're an idiot even when you know that they are irrational. It's part of the disease.

Your dad can't do this 24/7. Period. I don't know how anyone does it without a break. But maybe you can convince him that this is not the best for your mother either. My mother is much better off in this assisted living than she would be with me - always at the end my patience, my energy and my rope.

And I've heard my mother say the same thing - that she hates the way she feels and she wants to get better. She's in a phase now where she doesn't remember as often that she has a problem. (She thinks it's the rest of us with the problem.) It's a much more peaceful phase for her. But it is a phase, which means that it is always changing.

Please let me know if I can help. There are some wonderful, caring people on this site and they supported me as I began navigating these waters with my mom. I hope you have a good day today!

Please be aware that many of the psychiatric medications they give for hallucinations and undesireable behaviors cause grave side effects in the elderly. Some of the warnings say to not give to elderly confused dementia patients, or elderly patients with diabetes, as they can cause death. Please watch for any negative changes in behavior or health while on these meds. For the elderly, they should only be prescribed by a specialist specializing in the elderly, who is familiar with psychiatric medications. There are some nursing facilities who have a psychiatrist who visit the patients and who prescribe the meds.

In my situation the docs won't declare mom incompetent because I would then have some authority and not allow them to do half of what they do to her in order to milk the medicare cow. Greedy bastards they are.

For my sister and I life has been really hard with our 82 year old Mom. Our Mom is someone who thinks she is healthy as a horse. She always refused to go to the doctor and fought us about going. We decided we would just make the appointment and when she thought we were taking her shopping we took her to the doctor. We could not get her into the doctor. She kicked us, bit us, hit us. It was just horrible. I had to go into the doctors office to get someone to help us. They got her into the office and did a few tests. She has beginning diabetes, low thyroid, a heart murmur which is causing swollen feet and ankles that are purple, she has bad dementia and her blood is thickening. She says the doctors are nuts and nothing is wrong with her. The doctor prescribed thyroid pills. She throws them away and refuses to take them. What are we to do. She can be sweet one minute and the next incredibly mean. She thinks were out to steal from her. If she doesn't like what you tell her she swears at us so loud in public. She does not remember some family members and repeats constantly. She lives in her house and refuses to move out. My sister and I have families and lives, but have to constantly run back and forth to check on her. it's becoming so hard. She makes up stories that just make no sense. What are we to do? We try so hard to help. The doctor sees how she is and says we have to take one step at a time, but she won't and refuses to take any step to get better. Were afraid she will end up dying because she says she's fine and will not take any medication at all. Help

This subject is exactly why I come here to offer my support. I learned a great deal about, the illness,how to deal with certain situations,Meds,and triggering Moods,and how to read into why she reacts certain ways. I will start with Mom's behavior prior to DR diagnosis, completely stubborn(always has been though), extremely delusional, accusing of theft,refused help, believing she had dates with the neighbors much younger husband etc. but she was thank god aware enough to hand over her accounts and bills to a very nice friend who was the only one MOM trusted and she was very honest and trust worthy (her inner instintcts were right). Then one cold day in October she was found by police walking in her bathing suit. They brought her to a mental health hospital ER. Then she was admitted to a behavioral health section of hospital, 30 days to be stabilized with medication and she was much more pleasant less confused and no delusion. The Dr's there explained why she was diagnosed with cognitive impairment dementia and what Meds were needed and why. Well I took her home, got and aid to be with her during the times I worked, this lasted about 1 year with episodes of dangerous acts such as climbing out windows, leaving house in bitter cold with no coat. I would find her pills in places after I watched her take them (she would trick me into thinking she was taking them). So back to behavioral heath. Stabilized once again. Now she is in Nursing Home and she was doing quite well there, yes, confused but seemed comfortable. She WUVSICECREAM (hence my ID) so that is my stability test. If she dosen't want icecream I know she's not right. So I began to notice a change in her behavior so I asked her if she wanted icecream, the face and reaction I got you would think I asked her if she wanted poopie,I asked nurse if anything was different with her meds. They were slowly taking her off the seroquel. I was told they are not allowed to keep her on it and she is fine don't worry we are caring for her and she's ok for us. I attempted to explain the problem she is with out it. It was like I was talking to a wall. So I researched seroquel and found out it is not good for her physically so then I realizes maybe it's Ok and they know what is best. Although she is now, not showering for them wont conform like before and hoarding everything she could hoard, simply being impossible to care for. So then the nurse said they are trying to get a urine sample. I tryed to tell them, NO this is how she gets and now they are telling me they are having difficulty with her as if I didn't warn them. At the behavioral heath hospital they explain that the quality of life is better with the meds and it outweighs the danger. I have come to realize that even though Mom is not all there all the time she is still in there and you have to really open your mind and look for the little clues that may help you help them. Oh and also one day while visiting her in the *3 door access locked in unit* She whispered to me " after you leave I am going to pretend I am sleeping and when they are not paying attention I will climb out a window " That is when I realized that's what she did to me at home, fake a nap so I thought I could rest then she'd take off. This disire to get out was the only thing clear to her and the thought process to accomplish her mission was driven by her disire to be free to be herself. In her mind she wants to seek comfort. Where is your, safest, be yourself place? Just like a 2 year old that only knows "wheres mommy" because MOM means safe and secure. In reality this is mission impossible and they act out possibly because they can never accomplish the mission.

It's comforting to talk and hear from others going thru this sad, horrible situation. We took my mom to an Internest that is board certified in Geriatrics for the 2nd time on monday. He is such a cool Dr. I want to take a video of my mom and bring it, but I could tell that he got the general idea of what is happening. She said a few crazy things while we were there.
Our family dr. was or did not seem to be trying anything, nor did he seem to care. I guess he is burned out, plus some dr.'s are not allowed to spend too much time w/ their patients. Anyway, this new guy started my mom on trazodone at bed time, after trying 3 anti-depressants that made her more crazy an hr after taking them. The trazodone seems to help w/ her restlessness.....
She's been on airecept for a few years....I think that is causing some of her restlessness, but not sure. He added another 25mgs of the trazadone to ttry during the day and he also suggested respiratol (anti psychotic) to be given as needed, when she is acting mean and crazy.My dad actually gave her one last night.....Today she wasn't mean, just not remembering where the bathroom was etc.(normal these days) I was there for 4 hrs. helping out.
I found a girl that can come over to help out, but I know she will say she doesn't want her there or that she or my dad doesn't need help. yeah right....I want to tell her it's either that or she will have to go into a home. Can you tell a dementia person that? Bless you all and have a good night!!!!
She doesn't see that my dad can not do this 24/7. She does say that she hates the way she feels and wonders when she will get better.
I forgot to ask about a UTI......Thanks for the reminder......

First of all, I am so sorry! I know first-hand how difficult this can be. I knew years before it was obvious to everyone else that my mom was in trouble. Sometimes she was so convincing to others that I wondered about myself. Unfortunately, time has proven me right and Mom is now in an assisted living and everyone understands that she is mentally ill, as well as in the the moderate stages of dementia.

The best thing we ever did was to find a geriatric specialist who believed us, not just what she said. It was incredibly comforting to know that we were believed, as well as knowing that she was about to get the help (and drugs) that she needed.

I've noticed that when Mom is exceptionally irrational and delusional, she is usually diagnosed with a UTI shortly afterwards. I had no idea that these can cause such confusion in the elderly - without any outward symptoms. They are only diagnosed with lab tests.

My advice would be to find a geriatric specialist (if at all possible) and to have her tested for a UTI, as well. The geriatric specialist has been able to help us navigate all of these changes and given us an understanding of what is going on and prepare for what we will be facing.

And my heart goes out to you. Please keep us posted.

Elizabeth Grace

Gosh, all the stories are so sad....and so familiar! It's totally exhausting! Rden, do you have your mother on any type meds? My husband has vas dementia and we have HAD to put him on seroquel, aricept...now looking at upping the seroquel or adding ativan, or something! He can go for days without sleep and just calls out all the time...even with full time help in the house, it's disturbing and very stressful....of course with full time help, I have no time alone ever! Anyway, I would be curious to know what drugs she is on.....and if she isn't, for goodness sakes get her on some! If you have to tape her for the doctor to believe you, do it!

I feel so sorry for your father, it must be terribly hard on him, the patients have lost regard for anyone but themselves, which is the disease!

My mom is the same way. We get together w/ people or go to the doctor and she amazingly can act quite normal. At home she can be mean. She is never happy, she is hot then she is cold, she needs this and that and never happy. She wants to get out of the house and when she does, she wants to go home. She will not stop whining until you do as she says. Yet she can't make herself a bowl of cereal or pick out clothes herself. Of course everyone is stealing her stuff. She also will not let us bring in any help, because she doesn't need it. haha When we do bring someone in to interview she talks for days that our dad is cheating on her w/ whom ever has been there.
We hate to put her in a home because she will be more of a mess, but yet my dad is exhaughted. He is not in good health himself. We help as much as possible, but it's hard to juggle work, kids and our own households at the same time. What is the best way to transition for change, ie. in home care or assisted living?

Video tape the times she's doing this behavior and take that with you to the doctor! I care for my husbands 98 yr old grandmother and her doctor is the same way...just because she seems fine right that min, he blows off what we tell him she's been doing! So I've been getting together some tapes to show him and then see what he has to say about it. And if I get the same response and he always dose I'm taking her to a new doctor and then I will report him. And if you can right now get her in for a second opinion to see if there is more to all this then her doctor is telling you. If I had poa of grandma she would have been taken to a different doctor a long time ago! But my mother in law has it (but I care for grams in my home) And she thinks this doctor is all that, just because he says she healthier then him! What a joke, the poor woman has ALZ, high bp,diabetic, inconstant (sp) thyroid problems and so on! But good luck to you and hopefully you get to the bottem of her troubles and yours!