Medical Forum / Diseases and Disorders / Alzheimer's / April 2004
Lewy Body Dementia
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KD - 29 Mar 2004 23:39 GMT Hi all:
My dad has been having problems for about a year now, starting when he had a pacemaker put in and his docs changed his heart medication and such. Some medications made him flip out, want to leave his wife, etc. I thought it was a result of all the drugs being fiddled with and the pacemaker being put in, but recently he has been diagnosed with Lewy Body Dementia.
I've looked online a bit, I know it's not the same as Alzheimers, but seems to be related. Dad can be all right some days, other days there are hallucinations. Nothing that seems to upset him really - sometimes he'll walk into the room and ask his wife where all the kids went, or ask why there are so many people in his bed. Most of the hallucinations seem to be just an imaginary fellow he calls Dave. Last night I went out to dinner with Dad and his wife, and as I got in the car he explained how he had tried to talk Dave into coming with us, but he didn't want to. Later on, his wife told me how mad Dad had gotten earlier when they came to pick me up - he asked her why she wasn't pulling up to the front door to pick up Dave. Not getting a satisfactory answer, he got mad.
So, I've never heard of Lewy Body Dementia before. Is anyone out there experienced with it? After doing some research online, I realize now that he will not get better...but how fast is the downhill ride going to be? He's only 65 and just retired two years ago.
Thanks everyone...
KD
Adelle D. Stavis, Esq. - 30 Mar 2004 05:06 GMT > Hi all: > [quoted text clipped - 24 lines] > > KD Hi!
Sorry you are joining us here. But glad you found us. There is no way of telling how fast the slide will be. It's very individual. And depends on general state of health, among other things.
Other people are much better with the advise of what to read, and how to prepare. All I can give is our experience with frontal lobe dementia. My father in law had a different kind of frontal lobe dementia, but the progression is similar to LBD.
The biggest difference is the LO's lose function from the front of the brain first, then it creeps more towards the back. In AD, the progression is from the back towards the front.
Memory stays a little longer, but they have trouble finding the word they want to use, so they 'talk around' something. Control over emotion, especially volatile ones goes sooner. And anything with an emotional component is remembered longer than facts. They seem like the same person in many ways, but the loss of emotional control makes them very hard to deal with.
Hallucinations occur earlier, and motor skills hang around longer. 'Executive function,' knowing what order to do things (like bathe - take off clothes, turn on water, get into tub, get wet...) gets lost. So they think they know how to drive (or cook, or do woodworking...) because they remember that they drive/drove. Get nearly violent if you suggest that maybe it's not a good idea. But will get lost on streets they have traveled their whole lives, even when they can remember the steps for starting and driving a car.
Later, social appropriateness can be lost - like remembering one needs to be dressed in public. Oral skills are lost much sooner.
I would suggest doing a google search under "frontal lobe dementia." Of the dementias, it is particularly cruel, as communication skills are lost sooner than with AD. And then they lose oral motor skills but can hang around for a long time after that. It's really sad.
My FIL lost oral motor skills after anesthesia during surgery to repair a hip fracture. He developed aspiration pneumonia and didn't recover from it.
One small consolation, if it is indeed LBD (as opposed to other forms of FLD), it is not something which runs in families, so there is little chance you are destined to have it.
Adelle
Mary Gordon - 30 Mar 2004 13:56 GMT KD, I'm so sorry about your father.
If you use google and do a search, you'll find lots of good material such as these sites http://www.lewybodydementia.org/lbdlinks.html http://www.zarcrom.com/users/alzheimers/odem/lewy-d.html#l1 http://www.nottingham.ac.uk/pathology/lewy/lewyhome.html http://www.pdsg.org.uk/Factsheets/LewyBody.htm http://www.postgradmed.com/issues/2003/05_03/stewart2.htm
When they do talk about prognosis and speed of progression, the message is the same as this clip from the Alzheimer's Association page:
"Lewy body Dementia differs from Alzheimer Disease in that the progression of the disease is usually more rapid. Marked fluctuations in confusion can vary from hour to hour or week to week. Visual hallucinations (seeing things which are not real) are common and can be worse during times of increased confusion. Unlike Alzheimer Disease, memory difficulties may not be present in the early stage of the disease."
Mary G.
OcnGypZ - 30 Mar 2004 21:08 GMT >Subject: Lewy Body Dementia My 67 year old cousin has Lewy Body dementia along with Parkinson's disease.
He started having problems about 5 years ago.
He has his good days.. and his bad days. He's in a nursing home, taking the new meds. In his case, he is still very talkative, however, his motor skills are minimal.
Hang in there.
Babette
Darryl - 30 Mar 2004 22:32 GMT Hi KD,
Mary's posted some useful links. Here's another that deals with one family's experiences: http://www.lewybodyjournal.org.
----- The following paragraph was gleaned from: http://www.ninds.nih.gov/health_and_medical/disorders/dementiawithlewybodies_doc.htm
"Is there any treatment? Scientists continue to search for a specific course of therapy for people with dementia with Lewy bodies. Treatment is symptomatic, often involving the use of medication to control the parkinsonian and psychiatric symptoms. However, patients should be aware that antiparkinsonian medication that may help to reduce tremor and loss of muscle movement may actually worsen such symptoms as hallucinations and delusions. Similarly, neuroleptic drugs prescribed for psychiatric symptoms may in fact markedly worsen the movement symptoms. In general atypical antipsychotic medications are more successful than older drugs such as haloperidol." -----
My Dad was diagnosed with early-onset Alzheimer's disease (EOAD) at 56 years old. At 59 he underwent several acute medication changes (i.e., one drug was not tapered off while the other was titrated up to therapeutic levels) and his condition worsened drastically. Unfortunately(?) he went from caring for himself and being able to hold a conversation to his death within a month. Since Dementia with Lewy Bodies (DLB) was only revealed at autopsy, everyone worked with the assumption that he suffered from EOAD. Because of the rapid decline and onset of hallucinations, he was prescribed the typical anti-psychotic haloperidol. This, coupled with the medication changes and sedation by ativan (he became quite violent) were a little too much for the old fart to handle.
The rate of progression in DLB varies, although it is thought that it occurs faster than in AD.
A technical read can be found here: http://www.emedicine.com/neuro/topic91.htm
Take care, Darryl.
>Hi all: > [quoted text clipped - 24 lines] > >KD KD - 30 Mar 2004 23:24 GMT Thanks everyone, for your supportive responses.
As of now, Dad is not really that bad. He has his hallucinations, which don't really seem to upset him. We're fortunate in that his motor function is not really impaired, he's not showing any Parkinson's symptoms, although he has been a bit slouched over for quite some time. At times he gets agitated and unreasonable - for example, one recent Sunday morning he and his wife decided to drop by our house on their way home from brunch. My husband and I were at church. But from what my stepmother told me, he was convinced that we were indeed home, but chose not to answer the door because I just didn't love him, didn't care. And nothing she said could talk him out of it. Even when I came over later that day, he was quiet and still seemed mad at me for this imagined slight.
I am not his primary caregiver, his wife is, and I know she probably has it worse than she lets on - certainly far worse than I do. But I seem to be the life preserver, the one person in the world that can convince him that he is at home and not somewhere else he doesn't belong, that he shouldn't go out to find a job, that he is loved and cherished. If I go a day without being on the phone with him, he takes it as a personal insult and a sure sign that he is despised and unwanted by me. If I say I may be coming over later, or calling, he waits eagerly for it, and gets really depressed if I'm late.
It was only recently that he was given the Lewy Body diagnosis, and on the 29th I went online and looked up what it was all about. I guess learning all this has finally brought it all to reality for me. Some part of me has been convinced over the past year that this is a passing thing, surely that he would get better. I mean, he only turned 65 last year, he just retired the year before that. It all started when he had his pacemaker put in and his drugs switched around, surely it must have had something to with that and with time it would all pass.
But that fantasy is over for me now. I know he's not going to get better. The best he is today is quite likely the best he will ever be.
It's depressing, isn't it? I just got married last year, and thank God he was still able to walk down the aisle with me on my wedding day. We're planning to start working on having a family next year, he has always dreamed of being a grandfather. But it will be at least a year or two before those grandchildren come, will he be cognitive enough to able to enjoy them by that time? Will he even last that long?
I'm finding myself growing depressed over this...I'm torn between guilt over not being there with him every day, and not being able to deal with his continual needs and seemingly unreasonable demands on me.
I'm sorry to be such a gloomy poster...I know that many of you have it far worse than I do. But as you all probably know, it's just horrible to watch this. I guess I just assumed that he would always be there. I was so looking forward to the day when I give him a grandchild, but from what I'm reading about this horrific disease, he may never get to enjoy his grandchildren the way he always dreamed he would.
KD
> Hi all: > [quoted text clipped - 24 lines] > > KD Evelyn Ruut - 31 Mar 2004 00:24 GMT > Thanks everyone, for your supportive responses. > [quoted text clipped - 50 lines] > > KD KD don't you dare worry for a minute about being a "gloomy poster" That is what this newsgroup is for, and if you ask me there is little that is gloomier in real life than watching someone die by inches and to see the person you knew and loved, disappear before your eyes.
We have all been in your shoes in one way or another. My husband and I were just getting ready to enjoy his long awaited retirement, when his mom suddenly started behaving oddly at times. That was about 4 years ago, and for the last three years she has been living with us.
You are just beginning your journey with this illness, and we are coming in to the final lap, as we are presently going through all that needs to be done in order to place her in a professional facility, or nursing home.
Feel free to come here, vent, rant, ask questions, answer them, and just come to find friends who are also going through the same thing. I cannot begin to tell you how much their support has meant to me. I told the posters here all that was in my heart and all the difficulties we encountered every step of the way. The advice and comfort I found here was top notch.
You are welcome to join us anytime you have feelings you want to share along the way. It may be a journey no one wants to go on, but the friends from this newsgroup have surely made it bearable.
 Signature Evelyn
(To reply to me personally, remove sox)
Adelle D. Stavis, Esq. - 31 Mar 2004 04:45 GMT > Thanks everyone, for your supportive responses. > [quoted text clipped - 37 lines] > those grandchildren come, will he be cognitive enough to able to enjoy them > by that time? Will he even last that long? (lots of important stuff snipped)
KD,
This comment about your Dad and grandchildren really hit home. And honestly, we can't promise you anything. The answer is, possibly not. There are no words for the sadness that invokes. That's why we gather here at this NG. Everyone here has 'been there, felt that.'
My FIL wasn't really interested in his grandkid (we still only had one at the time) before we realized some odd behavior was actually a symptom of the dementia. He was just someone who had no desire to relate to someone who wasn't automatically interested in the same hobbies he had. And the more symptomatic he became, the less he was able to handle being around the kids, because their normal energy levels left him feeling very confused and overwhelmed.
By the time we realized what the symptoms meant, he had no meaningful way to relate to his grandkids because he had trouble remembering how one is supposed to feel and act towards family, even when he could say, "this is my granddaughter" (remember, emotions and executive function go away). When he died, my kids had no emotion for him, because he was never able to make a connection with them.
My Dad, whom we lost two years before my FIL (from cancer) lamented a few days before he died that my son (2 at the time) wouldn't remember him as a grandpa, only as a sick, old man.
There are never any guarantees. But we do keep a photo gallery on our fridge which includes all members of the extended family, even those deceased. The kids see these pictures every day and know who these people are. It's become very important to them.
Adelle
Songbird - 31 Mar 2004 15:05 GMT > . We're > > planning to start working on having a family next year, he has always [quoted text clipped - 19 lines] > > Adelle Both my grandmothers died before I was born, and I was named for both of them. My maternal grandmother died five months before my birth, but I have always felt I *knew* her, because my mother always told me stories about her or made comments like "your grandmother would have enjoyed that story you wrote." She was camera-shy, but I saw the few photos my mom had on a regular basis.
On the other hand, my father lost his mother in a drunk driver vs. pedestrian accident when he was 15. He found her body and his stepfather's. He had been close to her, and the memories were so painful, he never talked about her. I never saw a photo of her until last summer, when I asked his sister (whom I saw rarely because the family was understandably scattered after her death) for one. I also asked my aunt for any memories she had of her mother she was comfortable sharing, and finally I know where my blonde hair and soprano voice came from. (She once sang with Nelson Eddy!)
So in short -- KD, take pictures now. Write down funny or tender stories to share later. One, it may help you focus on the gift of love you have received, which may help you through this tough time, and two, it will help you remember things to tell your children so he will be *real* to them. As long as he can communicate, ask him about his memories of growing up -- what was school like? what games did he play? what chores did he do? Ask him about the first time he saw your mother. Sometimes the past is more real than the present, and the memories may bring him enjoyment as well. (Obviously if he can't communicate or it frustrates him, drop it.)
I'm on the start of this journey too. This NG is a place to vent, cry, scream, ask and laugh. So don't worry about censoring your emotions here -- as they used to say, let it all hang out, baby!!!
Songbird
Dennis P. Harris - 31 Mar 2004 07:10 GMT > I'm torn between guilt over > not being there with him every day, and not being able to deal with his > continual needs and seemingly unreasonable demands on me. DO NOT FEEL GUILTY. guilt is NOT allowed in this newsgroup.
you do what you can, and learn to accept that it's what you can do. you need to learn to NOT feel guilty because it does no one any good, and you really can't change things.
you need to take care of yourself first, because if you don't you won't be able to take care of him at all if you get sick. you need to take time for yourself so that you can preserve some sanity. you need to take time for your spouse to keep your marriage going (and having a parent with dementia is a sure test of whether your marriage will survive long term).
NO GUILT!
Gwen Love - 01 Apr 2004 00:19 GMT Dennis is absolutely right; guilt is NOT allowed on this newsgroup. We all do/did the best we can/could with the information available at the time we make a decision and that is all anyone can do. NO GUILT! Gwen
 Signature =========================================================== No one can walk all over you without you lying down on the ground first! ===========================================================
| | > I'm torn between guilt over [quoted text clipped - 15 lines] | | NO GUILT! KD - 01 Apr 2004 22:39 GMT Ok, I'm working on that part! In reality I am not his primary caregiver though, and feel a bit bad about his wife having to handle so much of it. Even the bits that I get are hard enough.
This is such a very strange disease though...different I think than Alzheimers, in that it comes and goes. This morning I get a call from Dad's wife, he's been up since 2 a.m. and is being unreasonable, can I please talk to him. So he gets on the phone, tells me he's in a trailer and doesn't know why he's there, he wants to go home. As the discussion progresses, he's now on a railcar, and he's supposed to be working and earning a paycheque, but is not sure what he's supposed to be doing. I just sort of went along with it, tried to change the subject, told him to take a break and watch some TV, read his newspaper, but I didn't help much I don't think. He then told me that he couldn't relax and do any of that because I had upset him - although he changed his tune quickly when I said I didn't want to upset him and perhaps would hang up and call back later. But then an hour or so later I called back and spoke withh his wife, he had decided to go for a nap. He gets up from that half hour nap and is a changed man, the one that we know.
We're also discovering that playing into his delusions can help. The other day, he walked into his living room where his wife was playing cards on the computer, and asks, "Where's Sue?" (her name). When she pointed out she was right there, he said, "No not you, the other one." He was even to the point of opening up the apartment door and looking to see if she was coming. Finally she got up and left the room, then opened and closed the door like she was coming in, then came over to him and greeted him. "Where have you been?" he asked.
I am going to take the advice that was given earlier and get snapping with my camera. If my children don't get to know him in person, I will make sure that they know who he was before this disease started taking over his mind.
I think that we are also going to try to make this summer all that it can be. For a couple of years we've talked about a camping expedition for example, just an overnighter, but only talked and never done it. Well this year, we will do it. And everything else that we can fit in, because we don't know what tomorrow will bring...or even if tomorrow is going to have Dad in it.
On another subject, I was wondering if there are some simple activities that your...I don't even know what the proper term is here...your loved ones perhaps? In my mind right now, victims seems more appropriate. Anyhow, I was thinking simple puzzles or games or something that he could do that could keep him busy. I don't think he could manage a card game really, maybe checkers or something like that could occupy him. Have any of you tried this?
It is wonderful to talk to people like all of you, people who genuinely understand what is happening, have been there and been through it and know what we're going through. Thank you so much for your support. I know that many of you have it far worse than I do right now, and I am grateful for your words of encouragement when you're all going through your own version of this.
KD
> Hi all: > [quoted text clipped - 24 lines] > > KD Songbird - 01 Apr 2004 23:09 GMT > On another subject, I was wondering if there are some simple activities that > your...I don't even know what the proper term is here...your loved ones [quoted text clipped - 3 lines] > checkers or something like that could occupy him. Have any of you tried > this? A friend of mine's dad with AD now loves playing dominos. It is simple enough for him to follow.
Songbird
Evelyn Ruut - 02 Apr 2004 00:09 GMT They would often play bingo at the daycare center. It is a simple enough game that didn't involve any particular strategy or memory skills, and the clients could all participate. They would help one another with it too. Ida only stopped participating in the last few months.
 Signature Evelyn
(To reply to me personally, remove sox)
> > On another subject, I was wondering if there are some simple activities > that [quoted text clipped - 10 lines] > > Songbird Lesanne - 02 Apr 2004 00:58 GMT My Mom plays a simple card game, that is basically counting - Skip Bo. Lately she needs help, but she still enjoys it. I have also noticed my 2 1/2 year old granddaugther orienting her. She comes up to her several times a day, sticks out her little hand and says, "whats your name?" "Shake hands and tell me whats your name?"
> They would often play bingo at the daycare center. It is a simple enough > game that didn't involve any particular strategy or memory skills, and the [quoted text clipped - 16 lines] > > > > Songbird Gwen Love - 02 Apr 2004 03:48 GMT Lesanne, what a sweet, smart granddaughter you have! Gwen
 Signature ================================= Ability is what you're capable of doing. Motivation determines what you do. Attitude determines how well you do it. - Lou Holtz =================================
| My Mom plays a simple card game, that is basically counting - Skip Bo. | Lately she needs help, but she still enjoys it. I have also noticed my 2 [quoted text clipped - 26 lines] | > > | > > Songbird Tumbleweed - 02 Apr 2004 00:02 GMT > Ok, I'm working on that part! In reality I am not his primary caregiver > though, and feel a bit bad about his wife having to handle so much of it. [quoted text clipped - 34 lines] > don't know what tomorrow will bring...or even if tomorrow is going to have > Dad in it. I dont want to rain on your parade, and maybe LBD is different, but my experience and that of many others here I think, is that moving these folks into a strange environment can be very stressful for them (and therefore for you!). There are also added complications that (esp for something like camping) they may wander off and get into harm more than they might at home. For only one night its probably not too bad, but just make sure he's not liable to wander! What is he like on long trips?
I took my dad on a vacation a few years ago, came home early as he was waking up every hour in the night and asking where we were, when he was going home, etc. I thought it would be good for him as we were doing stuff he liked all day long, but in reality he was better off at home where he at least 'felt' safe even if he didnt always know where he was.
Then later, when he was worse, he *hated* being away, complained constantly even when staying at relatives just overnight, on the car journey there, etc (anything longer than 5 minutes was a very long journey to him). YMMV of course, I hope it does.
> On another subject, I was wondering if there are some simple activities that > your...I don't even know what the proper term is here...your loved ones [quoted text clipped - 3 lines] > checkers or something like that could occupy him. Have any of you tried > this? Must be different for everyone, my dad used to be great at card games, but couldnt even manage simple dominos now, (and he doesnt like it) but does enjoy things like skittles or catching. When you do find something they like you can do it indefinitely they arent going to get tired of it :-)
> It is wonderful to talk to people like all of you, people who genuinely > understand what is happening, have been there and been through it and know [quoted text clipped - 4 lines] > > KD IME it gets worse (as they do), and then it gets better (when they get worse beyond a certain point) because they get too far gone too even experience the anxiety and trauma they did before. I would advise that chances are he will have to go into a home eventually, because 24x7 care is too much for any one person,and you need to start thinking about that earlier rather than later. Is daycare appropriate for LBD, to give his wife some respite? Its a whole different experience looking after someone 24x7, something I only did for a few short periods,and they need a break.
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KD - 02 Apr 2004 00:59 GMT They do have some daycare now, a homecare worker who will come in and spend time with him two or three times a week and let his wife get out and get her hair done or whatever, although sometimes she stays there while the person is there. I have recently offered my own house as a place of rest during the day - we only live a few blocks away and work during the day, the house is vacant while we're working and I've suggested to her that she come here while there's someone with him, watch soaps, take a nap, whatever she needs to do. She doesn't seem too keen on the idea, but I'm hoping she will eventually take me up on it. Otherwise she may very well burn out on this.
I know that he will quite likely have to go to a home eventually, I have resigned myself to this fact. I recently ensured with her that she has power of attorney, in the case that decisions have to be made for him because he can't. It may very well be that way now, I'm not sure, but she does have the POA already.
Regarding the camping, I think we'd be all right. We'd have tents close together, and he'd have to climb over her to get out. She has become accustomed to sleeping lightly, so he wouldn't likely be able to get away without our knowledge. But we'll certainly be more on the alert during a camping trip.
Thanks for listening...
KD
> > Ok, I'm working on that part! In reality I am not his primary caregiver > > though, and feel a bit bad about his wife having to handle so much of it. [quoted text clipped - 102 lines] > > Remove my socks for email address Evelyn Ruut - 02 Apr 2004 01:01 GMT > They do have some daycare now, a homecare worker who will come in and spend > time with him two or three times a week and let his wife get out and get her [quoted text clipped - 19 lines] > > Thanks for listening... KD, as Tumbleweed already pointed out, they usually HATE being in a strange place and ask over and over "when are we going home?"
Ida was absolutely impossible when I took her on a short trip to NJ to visit my father about a year ago. Two hours down there, a nice visit and two hours back. A gorgeous day, and I thought "what could possibly go wrong?"
It was pure hell. She forgot who I was, and nagged me the entire time. It was something I never did again. They are happiest in secure and same surroundings. What we see as an exciting change of scenery, they see as unfamiliar and scary.
You could try it and see how it works out.... have a contingency plan just in case it doesn't.
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(To reply to me personally, remove sox)
Adelle D. Stavis, Esq. - 02 Apr 2004 01:34 GMT My MIL's experience with taking Alan traveling was a little different. I think it's because it played into his hobby - photography.
They had always wanted to go to the Grand Canyon. When the diagnosis of FLD was finally made, MIL made the plans for the trip. Alan complained about the travel part, and wanting to go home, but loved the scenery and taking pictures. He even had moments when he thanked her for talking him into going (didn't last, but...).
The disease process had my FIL pacing in the evening and getting lost when he was trying to get to a specific place, but never wandering. And FLD patients keep complex thought processes longer than AD patients (note the complexity if KD's Dad's hallucination).
As for Day Care, what people mean is a center where the patients go for activities. The constant mental stimulation keeps the patient more present and using what they have. I wonder about this for FLD patients, because their thought processes are still fairly advanced.
My FIL remembered how to do garden chores, kept the kitchen clean, and other houskeeping stuff even when he forgot he had congestive heart failure and refused to take his meds (getting violent if you tried to make him). He could operate a car, but would get lost going to the hardware store. He could compose gorgeous pictures as a photographer, but entered sweepstakes and answered scam artists compulsively (KD - watch for compulsive behavior. Buying the same thing over and over, answering scam mail, etc.).
All this until about six months before he wound up in the NH. And until the anesthetic put him on that downward spiral, he was continent, could feed himself, and could sound lucid at the beginning of a conversation until he trailed off into a hallucination (though not bathe or shave).
Watch the paranoia that comes with the hallucinations. Getting on antidepressants and possibly antipsychotics sooner as opposed to later. FLD patients have fewer restraints on their emotions, and also, on acting on these emotions. When angered or scared, the can act to protect themselves from imaginary dangers, but in doing so, they can strike out at the nearest peopl. Medication helps with that, but not entirely.
Adelle
Darryl - 02 Apr 2004 03:18 GMT >Watch the paranoia that comes with the hallucinations. Getting on >antidepressants and possibly antipsychotics sooner as opposed to later. FLD [quoted text clipped - 4 lines] > >Adelle Antipsychotics are the tricky part of DLB. Typical antipsychotics may be contraindicated in DLB (causing Parkinson's like symptoms) and in fact, haloperidol may have been a trigger in my Dad's decline. Now, we've just learned that the atypical antipsychotics may be associated with cerebrovascular adverse events and on March 22, the FDA realeased a note regarding olanzapine (Zyprexa) and a risk of hyperglycemia and diabetes:
http://www.medscape.com/viewarticle/472363 (if this link doesn't work, the article is appended below).
Back to my Dad...while it is an unpleasant story, I'll reiterate it once more.
My Dad wouldn't hurt a fly. Then he started questioning my Mom and brother quite vigorously as to their "intentions" asking them, "why are you keeping me here". "Here" was home.
I was called home from school (I'm out of town) when things got bad. His delusions and hallucinations intensified to the point where I could drive him home (i.e., around the block) and calm him for 10 min. or so. Then the haldol kicked in and he became sedate but developed a a gait disturbance and syncope (i.e., fainting) overnight! The following 2 days were living nightmares--his tone was frustrated and threatening. His 6' and 200 lbs became a bit of a concern.
Finally, on a visit to the emergency room, he became physical with me and cleanly landed maybe 5 of about 100 puches. These punches were thrown with the intent to hurt and if they didn't, he sure was "going to get a gun and shoot me". He would have lucid moments but they would be quickly extinguished by rage.
I'm sure (or hope) that most DLB sufferers don't get to this stage but it's something that all caregivers should consider once those hallucinations/delusions become too real for everyone involved.
Aie...
Darryl.
===== Olanzapine Labeling Change Indicates Risk of Hyperglycemia, Diabetes
Medscape Staff Report
March 22, 2004 Eli Lilly and Co. has notified healthcare professionals of a revision to the labeling for olanzapine (Zyprexa), describing the increased risk of hyperglycemia and diabetes in patients taking the drug.
The U.S. Food and Drug Administration (FDA) has asked all manufacturers of atypical antipsychotic medications, including Lilly, to add this warning statement to drug labeling, according to an alert sent today from MedWatch, the FDA's safety information and adverse event reporting program.
In addition to olanzapine, the atypical antipsychotic class includes clozapine (Clozaril; Novartis), risperidone (Risperdal; Janssen), quetiapine (Seroquel; AstraZeneca), ziprasidone (Geodon; Pfizer), and aripiprazole (Abilify; Bristol Myers Squibb and Otsuka American Pharmaceutical).
According to the revised olanzapine labeling, "Hyperglycemia, in some cases extreme and associated with ketoacidosis or hyperosmolar coma or death, has been reported in patients treated with atypical antipsychotics."
The revised labeling recommends that "[p]atients with an established diagnosis of diabetes mellitus who are started on atypical antipsychotics should be monitored regularly for worsening of glucose control. Patients with risk factors for diabetes mellitus (e.g., obesity, family history of diabetes) who are starting treatment with atypical antipsychotics should undergo fasting blood glucose testing at the beginning of treatment and periodically during treatment."
In addition, all patients treated with atypical antipsychotics should be monitored for symptoms of hyperglycemia, including polydipsia, polyuria, polyphagia, and weakness, the labeling states. Patients who develop symptoms of hyperglycemia during treatment with atypical antipsychotics should undergo fasting blood glucose testing. In some cases, hyperglycemia has resolved when the atypical antipsychotic was discontinued; however, some patients required continuation of anti-diabetic treatment despite discontinuation of the suspect drug.
Adelle D. Stavis, Esq. - 02 Apr 2004 20:27 GMT > >Watch the paranoia that comes with the hallucinations. Getting on > >antidepressants and possibly antipsychotics sooner as opposed to later. FLD [quoted text clipped - 12 lines] > a note regarding olanzapine (Zyprexa) and a risk of hyperglycemia and > diabetes: My FIL had a non-specific FLD, and not DLB. As we look into things, it may be a form of multi-infarct dementia which just happened to affect the frontal lobe first. The PET scan was clear that the atrophy was most pronounced in the frontal lobe area.
But this medical difference may explain why anti-psychotics worked for him. While my MIL never told us what all of his medications were, we know there was an antidepressant (probably Paxil) and something to make him less aggressive (which was non-sedating in effect, so I doubt it was a tranq.). The result was that while he continued to relate made up info (like news about how they were going to redesign a highway or build a building next door), it ceased to be paranoid stuff about people following him and stealing from him.
Adelle
KD - 02 Apr 2004 23:15 GMT My dad is on so many meds it isn't even funny. He's got at least nine different medications that are taken pretty much every day...two are anti-psychotics (which seem to have helped rather than hindered - I think), blood pressure, anti-clotting, chlolesterol lowering...the list goes on and on.
The two antipsychotics are Seroquel (often prescribed for schizophrenia) and Reminyl which I understand is an AD drug. Before the trouble started, I think there were even more, related to heart problems. When all this first started going on, before he went on those two, we wondered if it was just this incredible mixture of drugs floating around in his body that were wreaking havoc on his mind. His wife asked the doctor what would happen if we just stopped them all, and they advised against it, the opinion was that he would go downhill very rapidly. So we listened. Who knows if they were right. We won't take the chance of taking him off any of it of course.
You all must wonder, as I do, what causes this to happen to our LOs. I wonder about any studies that have been done, if there are factors that are shared by many who end up with this horrible disease. I can think of several things that could be risk factors for Dad - he had two heart attacks, triple bypass surgery 15 years ago, has been a heavy drinker at times (though fortunately no longer). Over the years he's been prescribed a pile of drugs. When he retired and went from being active all the time to having nothing to do, no purpose for getting up in the morning, and found himself bored silly with retirement, did lack of stimulation contribute to it? I guess I just wonder if there are things that could have prevented this nightmare, or even just slowed it down.
Thanks again for listening. My current task is to a) try to slow down the guilty feelings and b) try to be there more for his wife than I currently am. I seem to be the magic bullet a lot of times, talking to me seems to calm him or take his mind off things, or at the very least, cheer him up. While it's difficult to listen to his tall tales sometimes, I'm learning to just play along and let him tell me about whatever he wants. If it makes him feel better, then it's what I have to do.
KD
> > >Watch the paranoia that comes with the hallucinations. Getting on > > >antidepressants and possibly antipsychotics sooner as opposed to later. [quoted text clipped - 30 lines] > > Adelle
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