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Another update, we're 1 week now since we stopped the venlafaxine, my Mom seems to be doing OK, she still has the hallucinations but at least they're enjoyable hallucinations and not the violent sinister ones, she gets a little agitated on and off but not something that's too much to deal with so I haven't put her on the exelon patch yet, I don't want to put her on that unless I absolutely have to. The melatonin is working great, I'm actually shocked that it's working that well, my Mom has always been a horrible sleeper even before the Lewy Body Dementia diagnosis but her sleeping became worse when she was going through a downturn, now she sleeps through the night, the only time I hear her on the monitor is when she gets up to go to the bathroom, other than that she sleeps very quietly. We have to see her Pulmonologist today for her routine visit, the weather is changing here and since she went off the nasonex she has her cough again that she had when she went through her downturn, I'm hesitant though to have the Doctor put her on something for it. Just curious if there's something natural out there that I can put her on that would maybe have the same results of the nasonex without the ingredients of it? I was thinking maybe just plain saline?
Oh Good Lord! my Mom's 34 year old hallucination boyfriend is back. I'm still going to take a watch and see approach, as long as it's that type of hallucination as opposed to the sinister ones she had a few weeks ago I can deal with it. I told my husband that my Mom with her hallucination boyfriend gets more action than we do LOL.
Just an update, we saw the new Neurologist, he gave my Mom a very thorough exam and she actually did pretty well from what I saw, we decided to definitely take her off the Venlafaxine and put her on 3mg of Melatonin to see how that helps with her sleep, and today was the 1st time where it seemed like my old Mom was back to her old self, there's been a great amount of improvement since removing Nasonex and Venlafaxine and she got a great nights sleep with the Melatonin, I didn't hear her at all on the monitor and she said she hasn't seen or heard anything since yesterday. The Neurologist of course said that there's no testing to diagnose Lewy Body Demential, but we're going to see how well she does being off the 2 meds, and he gave me samples of Exelon to try if the hallucinations come back and it makes her agitated. We're going to take a wait and see approach right now.
Just want to update everyone here. I took my Mom off the Nasonex when I saw the responses in this thread and I can't tell you what a difference it's made, it's the strangest thing but it's like she's coming out of a fog, hallucinations are still there but they're not as dramatic and violent like they had been, it's like the hallucinations have become calmer. She's engaging in more normal conversations now and is able to watch the news and comment on it. We see the Neurologist next week and I'll mention it to him about the meds in particular the difference since being off nasonex, and see if he recommends coming off the venlafaxine or just watch her right now while she's on it.
Thanks so much for your responses, I think the past couple of days I've been in meltdown mode, but reading your responses and in particular about the meds have my wheels turning and I feel that I really need to look into this further. The funny thing is I worked in the medical field for many years and usually I always look into med side effects thoroughly, but this time I didn't, I think we were so desperate when she had the UTI in May that we took anything given to us.
DeeDeeJ, you raise very common questions when there is a diagnosis of dementia. I can answer a couple of them:
Q. Are they doing this for attention? A. No.
Q. Are they being manipulative? A. No.
You really have to accept that there are physical deformities in their brains. These can be seen on autopsy (but not readily by other means, yet.)
Your mother is behaving as she is because she has tiny aggregates of Alpha-synuclein protein in her brain. You can read more about how this impacts her cognitive and behavioral conduct, if you care to. But it is real. It is not emotional or psychological. It is a deformity in her brain.
Drugs and several other things can cause hallucinations. But hallucinations are a primary symptom for Lewy Body Dementia. They occur in LBD folks taking good drugs and bad drugs and absolutely no drugs at all. They occur early in the disease process. (My husband was on no dementia or anti-psychotic drugs and no new drugs when he saw his deceased brother come up the sidewalk, and when he saw the bats flying in our bedroom.) How to handle them needs to be addressed by a neurologist with detailed knowledge of the disease.
Sleep disturbances are also a hallmark of the disease. Lots of things can cause poor sleeping. I have sleep problems and I don't have dementia. But a particular sleep disorder called RBD is strongly associated with LBD. It can start years before the dementia starts. And it is miraculously suppressed by a single non-addicting drug for 95% of people who suffer from it. I suggest you make careful notes about your mother's sleep problems and share it with the neurologist. You can read about RBD if you are interested. (A sleep study confirmed my husband's RBD more than a decade before he developed dementia symptoms.)
Lewy Body with Dementia is a specific physical problem in the brain. It is not Alzheimer's. It is not psychological. It is not caused by drugs (though obviously drugs can have adverse effects). Except for brief periods (called show-timing) it cannot be controlled by the person who has it.
I am so very glad that you will be having additional medical consultations soon. This needs to be addressed by a professional with a strong expertise in dementia in general and deep knowledge of Lewy Body Dementia in particular.
My heart goes out to you. LBD is a particularly "high caregiver burden" form of dementia. On the brighter side, many of the symptoms can be successfully addressed by a combination of drugs and thoughtful interactions. There is less brain cell death in LBD and therefore more material for the drugs and treatments to work with.
Of course you don't know how to deal with this. It isn't exactly taught in high school Family Life classes. But you can learn. And helping Mom have the best quality of life she can have can be enormously rewarding.
I'm a real bug on this stuff. And I know I sound like a bit of a screwball about it, but when we know a particular medication messes with someone's brain, and we know our loved one's brain is ALREADY compromised? To me, it just raises the possibility that some of these meds may make SOME kinds of dementia worse in SOME people.
DeeDee, get your mom's pillbox next to your computer and Google every single one of her meds. Write them down and see how many come up with hallucinations, sleep disturbances, confusion, etc., etc. Then decide (with doctor's input) how many of them can be safely discontinued.
Mom has dementia. I have just recently discontinued Namenda (in three days she was a new person), and every single other med she was taking when I took her to live with me a year ago that wasn't medically necessary. One I specifically remember was a pill for cholesterol. Really? She's on critical meds only. She's 87. On Monday, I'll be asking the doctor to discontinue her blood pressure pill. Her BP is consistently under 115 and consistently under 70.
Others may say, "What???? Are you nutz????" My belief is that the less chemicals we're pouring into old people's bodies? The better. I always ALWAYS suspect meds.
We see her PCP next week and the Neurologist the following week, I'll mention the Nasonex to him.
We're having such a difficult time with this, she just called me upstairs and her closet was all on the floor, she said the "woman" was stuck in the closet. I'm lucky that my Aunt (my Mom's twin) lives with us also and she's able to keep an eye on her, but my Husband and I are self employed, and while we have the luxury of changing our schedule to fit my Mom's Doctor appts in we also work very hard and 5 seconds after I tell her I'm home she's down the stairs telling us that the stuffed dolls we have in the kitchen are dying. I understand and feel awful about what my Mom is going through but this is really having an effect on us.
Do people who have hallucinations have the obsessive need to tell their loved ones every aspect of what's going on? I feel horrible for saying it, but my Mom has always craved attention and I wonder at times if she's doing this for attention?
We stopped giving our son asthma meds at night because he could not sleep. Nasonex is reported causing night terrors in young children. If I was going to discontinue a drug, I would discontinue the Nasonex at bedtime and move it to breakfast.
Jeanne, the times I've seen her sleep she seems to move a lot at times, and her sleep doesn't seem to be a good sleep at all, she makes noises etc. This really seemed to take off after a UTI in May, she never fully recovered.
DeeDeeJ, I know what you mean about being hurt by what they believe. How could they even think those things? Well, because their thinking process is messed up by tiny protein deposits in their brains. It really is a physical thing. It helps (some) to keep reminding yourself of this.
Does your mother thrash around in her sleep, waving her arms or kicking or pedaling with her legs? Make notes about everything you observe of her bad nights and share with the neurologist at the upcoming appointment. Her sleep issues may be treatable, and that can have a big impact on daytime behavior, as you have already observed.
Pam, right now I give her her Spiriva and Atenolol around noon, the Venlafaxine and Nasonex before bed.
Jeanne, my Mom has always been a horrible sleeper, she never got a full nights sleep. I have a baby monitor that I use because a few times she's had to use the rescue inhaler and she forgot how to use it, so the few times when her cough is bad I can run upstairs and give it to her. As far as her bad nights, she makes noises, sometimes like a groan, she talks to I guess her hallucinations. We tried using a sleep mask hoping that maybe it would help but she's kind of stubborn and refuses to use it most times, not even sure if that helps anyway.
I think what's most shocking to me is how she believes all of this, she asked me last night why I let my husband keep her down in the basement at night, of course we would never do that but it hurts that she would even think something like that and believe it.
DeeDeeJ, if you have been reading about Lewy Body you probably are aware that there is one particular kind of sleep disordered highly associated with LBD. What are her "bad nights" like?
retinal occlusions will make her see bugs. The stimulating effect of Spiriva combined with the steroid Nasonex may be depriving her of sleep. If you can fix the sleep problem, you can probably stop the hallucinations. Stagger the meds if you can, stimulate during the day to keep her awake and give the calming meds at bedtime (atenolol and venlafaxine) so she can sleep. Hope that helps.
Pam, a lot of my Mom's issue seem to do with sleep and whether or not she gets a good nights sleep, if she's had a bad nights sleep then the hallucinations and the talking to them are off the chart, if she had a good nights sleep they seem to be much milder. My Mom also has something called Retinal Occlusions, a few years ago when she had night terrors and saw bugs on the wall we thought it had something to do with that, now we know it most likely didn't.
Jeanne, the only meds she's on right now are Spiriva for her COPD, Atenolol for her high blood pressure, and Venlafaxine for anxiety, and Nasonex for allergies. She sees her PCP next week and I'm thinking of maybe doing away with the Venlafaxine and trying something like Buspar. I'll definitely read the article because I want to be as well informed as possible for her Neurologist visit.
Look for a trigger, something that sets off the pattern of hallucinations. Is it anxiety? Is it something on TV? The more you can tell the Neurologist the better. Keep a log of date, time and duration of the events. Visual? Auditory? both? Any other concurrent symptoms? And of course he will want to know what meds she is on, what supplements she takes and how much.
Is your mom on any drugs for LBD? Aricept was very helpful in decreasing hallucinations for my husband.
There is a very interesting and helpful article about drugs useful for treating the symptoms of LBD, here: http://lbda.org/sites/default/files/dlb-boevecontinuum04.pdf It is a long article and it may be more technical than you are looking for, but about in the middle is a chart of symptoms and a list of the drugs that have been found to be helpful, and the therapeutic doses. Obviously this is not a do-it-yourself treatment plan; it is intended for other professionals. But many of us caregivers have found it useful to discuss with our loved ones' doctors.
In general, hallucinations don't need treatment if they are not disturbing to the person having them. It sounds like your mom's have crossed that threshold.
Sorry, accidentally hit submit before I asked the question.
My Mom's hallucinations are getting worse, at 1st they were fun hallucinations but now they're getting much more sinister, 1 of the hallucinations has a gun, I had to hide the phone because she kept saying she was going to call the Police. My Mom has always been stubborn and non-trusting so it's not a shock when I tell her that no 1 is going to hurt her yet she doesn't believe me. Also 1 of the hallucinations is her "boyfriend" and she'll sit in her room with no tv or lights on because she doesn't want him to see her without any make-up on. My Mom has always been very vain and I have to wonder are these hallucinations basically her sub-conscious coming out?
We're going for a 2nd opinion with a Neurologist in a couple of weeks, we were hesitant to put her on meds for the hallucinations because of side effects but I think we're going to have to do it now because her obsession and fear is starting to get to be too much.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
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APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
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APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
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If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
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This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
Thanks again for all your help.
Thanks so much again.
Q. Are they doing this for attention?
A. No.
Q. Are they being manipulative?
A. No.
You really have to accept that there are physical deformities in their brains. These can be seen on autopsy (but not readily by other means, yet.)
Your mother is behaving as she is because she has tiny aggregates of Alpha-synuclein protein in her brain. You can read more about how this impacts her cognitive and behavioral conduct, if you care to. But it is real. It is not emotional or psychological. It is a deformity in her brain.
Drugs and several other things can cause hallucinations. But hallucinations are a primary symptom for Lewy Body Dementia. They occur in LBD folks taking good drugs and bad drugs and absolutely no drugs at all. They occur early in the disease process. (My husband was on no dementia or anti-psychotic drugs and no new drugs when he saw his deceased brother come up the sidewalk, and when he saw the bats flying in our bedroom.) How to handle them needs to be addressed by a neurologist with detailed knowledge of the disease.
Sleep disturbances are also a hallmark of the disease. Lots of things can cause poor sleeping. I have sleep problems and I don't have dementia. But a particular sleep disorder called RBD is strongly associated with LBD. It can start years before the dementia starts. And it is miraculously suppressed by a single non-addicting drug for 95% of people who suffer from it. I suggest you make careful notes about your mother's sleep problems and share it with the neurologist. You can read about RBD if you are interested. (A sleep study confirmed my husband's RBD more than a decade before he developed dementia symptoms.)
Lewy Body with Dementia is a specific physical problem in the brain. It is not Alzheimer's. It is not psychological. It is not caused by drugs (though obviously drugs can have adverse effects). Except for brief periods (called show-timing) it cannot be controlled by the person who has it.
I am so very glad that you will be having additional medical consultations soon. This needs to be addressed by a professional with a strong expertise in dementia in general and deep knowledge of Lewy Body Dementia in particular.
My heart goes out to you. LBD is a particularly "high caregiver burden" form of dementia. On the brighter side, many of the symptoms can be successfully addressed by a combination of drugs and thoughtful interactions. There is less brain cell death in LBD and therefore more material for the drugs and treatments to work with.
Of course you don't know how to deal with this. It isn't exactly taught in high school Family Life classes. But you can learn. And helping Mom have the best quality of life she can have can be enormously rewarding.
Atenolol: Infrequent side effects include abnormal dreams; rare side effects include confusion and hallucination.
Venlafaxine: Strange dreams; hallucination, confusion, memory problems, trouble concentrating.
I'm a real bug on this stuff. And I know I sound like a bit of a screwball about it, but when we know a particular medication messes with someone's brain, and we know our loved one's brain is ALREADY compromised? To me, it just raises the possibility that some of these meds may make SOME kinds of dementia worse in SOME people.
Mom has dementia. I have just recently discontinued Namenda (in three days she was a new person), and every single other med she was taking when I took her to live with me a year ago that wasn't medically necessary. One I specifically remember was a pill for cholesterol. Really? She's on critical meds only. She's 87. On Monday, I'll be asking the doctor to discontinue her blood pressure pill. Her BP is consistently under 115 and consistently under 70.
Others may say, "What???? Are you nutz????" My belief is that the less chemicals we're pouring into old people's bodies? The better. I always ALWAYS suspect meds.
We're having such a difficult time with this, she just called me upstairs and her closet was all on the floor, she said the "woman" was stuck in the closet. I'm lucky that my Aunt (my Mom's twin) lives with us also and she's able to keep an eye on her, but my Husband and I are self employed, and while we have the luxury of changing our schedule to fit my Mom's Doctor appts in we also work very hard and 5 seconds after I tell her I'm home she's down the stairs telling us that the stuffed dolls we have in the kitchen are dying. I understand and feel awful about what my Mom is going through but this is really having an effect on us.
Do people who have hallucinations have the obsessive need to tell their loved ones every aspect of what's going on? I feel horrible for saying it, but my Mom has always craved attention and I wonder at times if she's doing this for attention?
I just don't know how to deal with this at all.
Nasonex is reported causing night terrors in young children. If I was going to discontinue a drug, I would discontinue the Nasonex at bedtime and move it to breakfast.
Does your mother thrash around in her sleep, waving her arms or kicking or pedaling with her legs? Make notes about everything you observe of her bad nights and share with the neurologist at the upcoming appointment. Her sleep issues may be treatable, and that can have a big impact on daytime behavior, as you have already observed.
Jeanne, my Mom has always been a horrible sleeper, she never got a full nights sleep. I have a baby monitor that I use because a few times she's had to use the rescue inhaler and she forgot how to use it, so the few times when her cough is bad I can run upstairs and give it to her. As far as her bad nights, she makes noises, sometimes like a groan, she talks to I guess her hallucinations. We tried using a sleep mask hoping that maybe it would help but she's kind of stubborn and refuses to use it most times, not even sure if that helps anyway.
I think what's most shocking to me is how she believes all of this, she asked me last night why I let my husband keep her down in the basement at night, of course we would never do that but it hurts that she would even think something like that and believe it.
There is a very interesting and helpful article about drugs useful for treating the symptoms of LBD, here: http://lbda.org/sites/default/files/dlb-boevecontinuum04.pdf It is a long article and it may be more technical than you are looking for, but about in the middle is a chart of symptoms and a list of the drugs that have been found to be helpful, and the therapeutic doses. Obviously this is not a do-it-yourself treatment plan; it is intended for other professionals. But many of us caregivers have found it useful to discuss with our loved ones' doctors.
In general, hallucinations don't need treatment if they are not disturbing to the person having them. It sounds like your mom's have crossed that threshold.
Good luck!
My Mom's hallucinations are getting worse, at 1st they were fun hallucinations but now they're getting much more sinister, 1 of the hallucinations has a gun, I had to hide the phone because she kept saying she was going to call the Police. My Mom has always been stubborn and non-trusting so it's not a shock when I tell her that no 1 is going to hurt her yet she doesn't believe me. Also 1 of the hallucinations is her "boyfriend" and she'll sit in her room with no tv or lights on because she doesn't want him to see her without any make-up on. My Mom has always been very vain and I have to wonder are these hallucinations basically her sub-conscious coming out?
We're going for a 2nd opinion with a Neurologist in a couple of weeks, we were hesitant to put her on meds for the hallucinations because of side effects but I think we're going to have to do it now because her obsession and fear is starting to get to be too much.
Thanks for any info you can give me.