 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Alzheimer's / January 2004Dementia with Lewy Bodies vs. AD short...(attn Ken)
Hi Ken, If you don't mind, please post a message with all your Dad's medications and make comments on where the hallucinations/delusions started, why he was prescribed Ativan, and a timeline...from when he was diagnosed to today. I'm having a hard time filtering through all the threads that contain bits and pieces of info. I just caught your DLB vs. AD question. I have to be brief right now, but in short, it is difficult to differntiate between the two. Most importantly, anti-psychotics will worsen DLB which itself is initially characterized by hallucinations/delusions. Physically, a DLB sufferer may have an expressionless face and stooped posted when compared to an AD patient. There is some differentiation on MMSE exams (my Dad scored 27/30 3 months prior to his death) but I don't remember where the differences are. DLB sufferers also become indifferent and present an interesting mix of psychotic and vegetative symptoms. The delusions/hallucinations are probably the greatest indicator of DLB especially if they occur early is the disease. Later in the disease process, it becomes increasingly difficult to make any differentiation. I'll try to fill in the gaps in the next couple of days. >I just caught your DLB vs. AD question. I have to be brief right now, >but in short, it is difficult to differntiate between the two. Most >importantly, anti-psychotics will worsen DLB which itself is initially >characterized by hallucinations/delusions. Physically, a DLB sufferer >may have an expressionless face and stooped posted when compared to an That should read: stooped *posture* Must proofread before clicking send. ;) >AD patient. There is some differentiation on MMSE exams (my Dad >scored 27/30 3 months prior to his death) but I don't remember where [quoted text clipped - 7 lines] > >I'll try to fill in the gaps in the next couple of days. Darryl, Dad's memory has been getting worse for approx the last 2 or 3 years. Had the most trouble with his computer. He used to be on the cutting edge of technology with it and slowly he forgot how to even get online. Started loosing his glasses alot. He was aware of all this. He would say, "I just cant remember how" to do stuff. He still mowed the lawn. Took care of the pool. Went to the store. In oct 03 he started slowing down physically. Mom and him would walk the mall and he all of a sudden could not keep up. Then he had to sit down cause he was tired. After that he needed help dressing, getting out of chairs ect. No delusions or hallucinations. Mom took him to the Dr. after xmas. They did blood work. Dr called the next day and said to take him to the ER. May have had a silent heart attack. Took him to the ER and they admitted him to the hospital to monitor his potassium level. That was 12/31/03. New years eve. That night after we left he got out of the hospital bed and pushed a nurse. Very combative and angry. Wanted to go home. They gave him 2mg of Ativan to calm him down. I think they gave him more since he was incoherent almost 36 hrs. On an IV the whole time. Potassium and all blood levels returned to normal. He never seemed the same after that. 1 day later they discharged him to a rehab for his weakness. At the rehab he kept trying to walk around at night. (He had been doing this at home for some time without issue). Got angry and combative when they tried to return him to bed. Pushed another nurse, and threw things. Very angry. (He always had somewhat of a quick temper but was always rational) Gave him Ativan again because it was in his chart from the hospital. Only 1mg this time but he was incoherent for another 24 hours. Could barely sit up. The next night he tried crawling into bed with a female patient. Ativan again. Next day a psych consult prescribed him the seraquel. Not sure of the dosage yet. I'll find that out. I was told it was the lowest mg to start. That night, he started with the delusions, paranoia and hallucinations. I told the nurse. He is also on restiril at bedtime and zantac. Tylenol as needed. The female patient was understandably upset so they said they had to transfer him. Said Heartland Alzeimers facility was where he was going. I was ok with it as the rehab was crowded and dirty. Heartland is very nice. Big rooms and very clean. Lots of late stage AD patients though. I suspect it would be a very scary place to spend the night. Same thing there. Wandering at night (they allow it), paranoid delusions, hallucinations became more intense. Ativan after he grabbed a nurse by the throat. Ativan again after he grabbed one from behind the next day. He seems to be building a tolerance as he is not so incoherent as long. His face is somewhat expressionless. Very hard to communicate with. Mostly gibberish. Walks very slowly and shuffles his feet. Stooped posture. I tell him to stand up straight and he can. Tell him to try taking bigger steps and he can (when he wants to). Fell in the lunch room. Luckily he only skinned his elbow. Started seeing and yelling at small animals (that of course were not there) and the lunch cart right after the fall. Refuses to let them take blood now. Thinks they are trying to kill him. Dr ordered an increase in the seraquel by 3x. Told his nurse (who is really good) that the delusions and hallucinations started right after he started seraquel initially (in the rehab). Said he'd tell discuss it with the Dr. Dont think he's been given the MMSE or the clock test. Hope all this makes sense. I had to write it quickly. Afraid of what is next. This is day 14 since we rushed him to the ER. Thanks, Ken > Hi Ken, > [quoted text clipped - 20 lines] > > I'll try to fill in the gaps in the next couple of days. http://www.nottingham.ac.uk/pathology/lewy/lewyinfo.html I think you will find the above helpful. Certainly could be Lewy Body dementia from what you describe. Mary G. Complained last night to his nurse. Really put her on the spot with the LBD/AD/Medications question. Today a Psych stopped the seraquel and put him on cyprexa (zyprexa??). Said he may be able to go home in a week. Can walk/dress/communicate. I think the insurance is pushing him out. Probably better off though. I think he will do much better at home. We'll need to have an aid there with him and Mom. Does anyone have any input on the Cyprexa? My initial research seems like it's good. TX! > Hi Ken, > [quoted text clipped - 20 lines] > > I'll try to fill in the gaps in the next couple of days. Ken, MIL's MD put her on Zyprexa when I described the difficulty of keeping her asleep during the night and major problems with the evening routine. She'd been started on Zoloft (anti-depressant) 5 months prior (no medical issues and likely small-cell vascular type dementia). I thought I wanted more of a sedative, so was skeptical. But it worked beautifully-for awhile. What I found was that it dampened the resistance, so that she could be more easily managed. I could see her trying to disagree, but she just let it go and we could move on. Did improve appetite some and she had a moderate weight gain. It did help with the night-time behavior issues and keeping her asleep at least until 4:30 or 5 AM. I noticed more of a shuffling type of walk after about 6 months, which might have been related. We placed her in an AD-specific ALF 7 months later because she couldn't be kept occupied here, couldn't comprehend conversation well and was unable to remember much familiarity. And with the progression of the disease, it was discontinued at 18 months-with some increased alertness noted -for awhile. I regard it as a miracle drug-it really helped us manage her. Alas, the disease moves on anyway. Beth > I noticed more of a shuffling type of walk after about 6 months, which might > have been related. a shuffling walk is more common as dementias advance, so it's very possible that it's not related to meds at all. Dennis wrote: >a shuffling walk is more common as dementias advance, so it's very possible that it's not related to meds at all.< Yes, that's possible-it all depends on what parts of the brain work and what don't. In Marion's case, there was a stooping of the walking posture, decreased push-off in swing-so more stiff-legged and slightly smaller steps----all of which are typical of senile gait noted 5-6 months after the Zyprexa was started. These occurred when we were keeping up a rather vigorous walking schedule with her-but her cognition was steadily declining. After the Zyprexa was stopped, I thought her gait was a little less rigid after she was warmed up. Now 6 months later, she walks stiffly with short steps "cold", but looks pretty good after moving around. Since I'm a physical therapist, I tend to notice the gait issues with the residents more than perhaps others. A shuffling gait-where they might not pick up feet, are stuck bent-over- is also usually characterized by a decrease in righting responses to loss of balance-thus they like to hold the wall, rail or something. When I see that picture, it's likely that a particular part of the brain is involved and it is from the disease process. Some medications result in that picture as well. In Marion's case, her balance responses are very much intact. I think the Zyprexa did color her walking for awhile, but was well-worth it. Now if she'd become diabetic-I'm not sure. Her walking quality is more related to recent activity and degree of mental alertness. Others with AD have more involvement in the deep structures that affect movement and gait. I feel very fortunate that her mobility has not been a big issue-even tho' I am better prepared than many to handle that. My hunch is that NH care tends to be needed for those that have the impaired mobility; whereas the mobile or at least the transferable can be cared for at an Assisted Living Facility level. Right now, I can't believe that she can still walk safely when she cannot recognize what food is or what to do with it. Different parts of the brain involved! Beth >Complained last night to his nurse. Really put her on the spot with the >LBD/AD/Medications question. Good. Unfortunately you couldn't speak with the doctor. >Today a Psych stopped the seraquel and put him on cyprexa (zyprexa??). Said >he may be able to go home in a week. Can walk/dress/communicate. I think >the insurance is pushing him out. Probably better off though. I think he >will do much better at home. We'll need to have an aid there with him and >Mom. These 'atypical' neuroleptics can be thought of like SSRIs. They are selective for dopaime and serotonin blockade but they act at other receptors as well. Zyprexa (olanzapine), appears to be the best suited for sufferers of Parkinson's which may loosely translate to being better for sufferers of DLB. Although Seroquel is newer, it may not be as useful in DLB if, in fact, this is what your Dad has. Although the fact that delusions/hallucinations were brought on by the Seroquel is something that should not be overlooked. For the doctor to have upped the dose to 3x is beyond me; did this worsen his symptoms??? IMO, with the docs concluding (based on CT and MRI) that he does not suffer from AD, the prescription of anti-psychotics should be reconsidered. I agree with Mary that it *sounds* more like DLB than AD. See how the olanzapine works out and be very aware of a worsening in his gait and other Parkinson-like symptoms. If the drug helps him to return to normalcy, ask about tapering him off of it. Make sure to point out to doctors in the future that AD and a bleed have been ruled out by CT and MRI. Take care, Darryl. >Does anyone have any input on the Cyprexa? My initial research seems like >it's good. [quoted text clipped - 25 lines] >> >> I'll try to fill in the gaps in the next couple of days. Hello everyone, The Zyprexa seems to be helping. I was actually able to converse with him a few times. Almost lucid. He answered questions that I thought he's never be able to. The anger was under control until yesterday. He had an appt at a nearby hospital to check his swallowing problem. (He coughs alot after eating/drinking) Me and Mom picked him up at the home and took him over. He cried a bit but generally he did ok. Seemed to perk up when we were driving. Got him to the hospital, they did the test. Found him to be aspirating when drinking/eating. Recommended a feeding tube. Then we took him back. (Drove him around a bit). He was ok when I left to go back to work. Told me he loved me. Mom stayed for a while and then left. After that he lost it again. Went into another patients room and got into a fight. Pushed the guy up against a wall and would not let go. Pulled the fire alarm. Very angry. They gave him Ativan again. I found him in bed and out almost cold when I went back after work. I hate that Ativan stuff. It sets him back so much. But,,, I know it's necessary as he is a danger to himself and others in that state. The nurse said something about having to Baker act him if he actually hurts another patient. Can they do that without family consent? I'm guessing the change in environment triggered this. He has 2 more offsite appts this week. Scared to death of what will happen. Tx for listening. Ken > Hi Ken, > [quoted text clipped - 20 lines] > > I'll try to fill in the gaps in the next couple of days. >The Zyprexa seems to be helping. I was actually able to converse with him a >few times. Almost lucid. He answered questions that I thought he's never >be able to. The anger was under control until yesterday. Good, unfortunately there's always a but! It seems strange that the nurse is suggesting that they'll have to "Baker Act" him if he hurts another patient; where's the doctor in all of this? To be very blunt, I'm surprised that they haven't used physical restraints, or have they? Furthermore, it's obvious that your Dad isn't acting himself and so he should be monitored around the clock--he shouldn't be allowed to get into fights, etc. Perhaps it's different in the States but that's what my Dad got up here in chilly Canada. I actually asked for restraints he was so out of control. I wanted to keep the doses of Ativan to a minimum (the overnight nurses would just knock him out with the stuff) because of the risk of aspiration pneumonia. Are they giving him intramuscular shots? Have they upped the dose of Zyprexa? Maybe it's not playing a role and could be washed out of his system to eliminate one of the variables. Take care, Darryl. >He had an appt at a nearby hospital to check his swallowing problem. (He >coughs alot after eating/drinking) Me and Mom picked him up at the home and [quoted text clipped - 18 lines] > >Ken Hey Darryl, Dr. Smug? He really doesn't have much to say. I'm ready to go off on him. No dosage increase yet. What good would a Baker act do? 72hrs in a state hospital would likely be the straw that broke the camels back. I'll bring up the supervision issue. No restraints, I don't think they do that there. Intramuscular shot is exactly what he gets. I cant stand to think of them holding him down to give him the shot (takes 3 of them). The nurses get scared when he does this. He towers over all the patients and most of the nurses (6'). Weighs about 175. I asked him to squeeze my hand the other day and he's still really strong. Sometimes he acts like he can barely stand and then other times he's quite limber. Found an AD crises site below. Hopefully they can help if it comes to that. http://www.alzcare.org/crisis_line.htm Ken > >The Zyprexa seems to be helping. I was actually able to converse with him a > >few times. Almost lucid. He answered questions that I thought he's never [quoted text clipped - 43 lines] > > > >Ken > Got him to the hospital, they did the test. Found > him to be aspirating when drinking/eating. Recommended a feeding tube. oh, how comforting for a demented person who doesn't understand what's going on! what in the hell were these folks at the hospital thinking? better to talk to the folks at his facility about getting assistance from speech therapist to diagnose the problem he's having with aspiration and possibly suggest changing feeding methods or foods. i'm sure glad that i have a Living Will that specifies absolutely no feeding tubes if i'm mentally impaired with no chance of improvement. that's the last thing i would want. what were his wishes regarding feeding tubes before the dementia? Yeah, the facility has a speech therapist thats working with him. He's on thickened liquids and they are puree'ing (sp?) his food. The therapist at the hospital said even with that diet, he will still aspirate as it builds up in his throat. I know he would not want the tube and we are not considering it at this point. Just a month ago he was chowing down on turkey with all the fixins.. Now he cant swallow right? It all seems too sudden to me. I'm ready to try him at home. I think just being at the nursing home is taking a toll. > > Got him to the hospital, they did the test. Found > > him to be aspirating when drinking/eating. Recommended a feeding tube. [quoted text clipped - 13 lines] > > what were his wishes regarding feeding tubes before the dementia? > I'm ready to try him at home. I think just being at the nursing home is > taking a toll. if he can't swallow at the facility, i doubt if being at home would help. and would he be safe there? do you have someone who can deal with him if he gets physical again? Ken said: > > I'm ready to try him at home. I think just being at the nursing home is > > taking a toll. Dennis replied: > if he can't swallow at the facility, i doubt if being at home > would help. and would he be safe there? do you have someone who > can deal with him if he gets physical again? Ken, Dennis has made excellent points. I didn't post anything when you mentioned that you were thinking of taking him home, but I thought the same thing as Dennis... that might be an awful mistake. If he can't swallow and he gets violent, what on earth will you do with him at home? He isn't going to suddenly get any better at home, you know. It isn't the environment that is at fault, it is his lack of cognition, and that isn't about to suddenly get any better till his meds are properly balanced.  SignatureEvelyn (To reply to me personally, remove sox) I was thinking of getting a male home health nurse. The company I work for is in that business. There is no way I'd leave him alone with Mom. Maybe the nurse could spend the night there and then take him to an AD daycare for the day. Weekends my sis and I could help. It just seems as if he's doing terrible at the home. Remember, the downhill spiral all began on new years eve. He was doing fine at home. Sure he was having some memory issues but his Dr said he was probably in the early stages. Put him on exelon. I'm not sure what to do about the swallowing issue. Up until him being admitted to the hospital there was no history of violence or demented agitation. Now, he's out of control. The nurses just stick him with Adavan if he starts acting up. He's dehydrated and looks like hell. Not eating or drinking much. Social worker says that our insurance co. is probably going to demand he be discharged soon anyway. They say if he can walk, he's able to go home. Considering a small AD home as well. It all just sucks so bad.. I know he wants to go home, he said it's up to Mom. Thanks guys, Ken > Ken said: > [quoted text clipped - 16 lines] > that isn't about to suddenly get any better till his meds are properly > balanced. > I was thinking of getting a male home health nurse. The company I work for > is in that business. There is no way I'd leave him alone with Mom. Maybe [quoted text clipped - 20 lines] > > Ken Ken, If he suddenly didn't recognize you or your mom, or if he perceived the male health nurse as a threat suddenly (it could happen) what would you do? You don't have the possibility of injecting him with any Ativan. What if he started getting out of hand and hitting people? Please consider this one possibility.... that his illness might be getting worse suddenly (it does happen with Alzheimers very often) and that maybe it hasn't got anything to do with the nursing home, but with his condition.. Have you tried taking him out for dinner? Or home just for a day? Is he manageable in a short term test situation? Don't consider taking him out of there unless you are really truly sure. The people in those places are professionals, and I will grant you that they could be just hitting the wrong nerves with the man, but there is also a very good possibility that you are longing for the time when his illness WAS manageable in a home environment. Maybe you are putting the cart before the horse, so to speak, thinking that it is not his condition, but his environment that is bringing about this difficult behavior. Please be sure. Even a male nurse might not want to handle a paranoid, physically abusive person. This illness can do terrible things to a human mind. It is also perfectly capable of taking a SUDDEN turn for the worse, making a manageable kind person into a difficult and violent paranoid patient. One poster here, told of her husband, a former state trooper, who was totally unmanageable and would hit her when she would try to change his diaper and in other situations too. Be sure, Ken...be really sure. If you pull him out of the home, it might be a hassle getting him back in. SignatureEvelyn (To reply to me personally, remove sox) Evelyn, I'm not sure. Mom and I took to to a nearby hospital on monday for a throat xray and he was an angel. He lost it after we brought him back to the facility though. My sis and Mom tried to take him to a Neurologist yesterday and he lost it completely. They got him in the car with his nurses assistance and he laid down across the center console. Tried to hit anyone that would help him. Started screaming profanities. First time he's done this with family present. He is declining rapidly and I want to intervene somehow. I just dont know what to do. I've been under the impression that AD progresses slowly. I suppose I have to deal with the possibility that this is false. You are right about me wanting him back to his manageable state. It's hard to let go of that hope. I fear he is not going to make it much longer. Ken > Ken, > [quoted text clipped - 34 lines] > Be sure, Ken...be really sure. If you pull him out of the home, it might > be a hassle getting him back in. I'm glad you did this. For a while he sounded as if he wasn't far enough along to lose his ability to swallow. I was thinking of something just physical and not related to AD at all. Good he had an x-ray. My mother didn't have a clue by the time she was aspirating her food. She couldn't walk anymore, she hadn't been able to talk. Sometimes anti depressants can help with a lot of things and have a calming effect. Can you speak to the doctor about giving him something other than Ativan? The Cranky Genee >Evelyn, > [quoted text clipped - 17 lines] > >Ken > Evelyn, > [quoted text clipped - 17 lines] > > Ken Ken, Omigosh, I can just imagine how horrible that must have been for your poor mom. Ken, I have heard of cases where this illness takes a SUDDEN turn for the worse, just like your Dad has done. It sounds to me like it isn't where he is living, it isn't who is treating him, it isn't the medications, it is the illness itself. What I think I would do, if I were you, is to allow him to stay there for as long as you can, letting him acclimate and letting the people there deal with the situation the best they can. After all, it is in THEIR best interest if he is comfortable, happy, manageable. Keep visiting, keep watching, and stay diligent about what meds he is on and how they are affecting him. The neurologist sounds like your best bet. After he is fully stabilized, then you could re-evaluate the situation and see if it is worth a shot at bringing him back home, although to be honest with you, it sounds to me like the time for that has passed. One thing is sure, you can't turn back the clock. There is probably a solution for his behavior somehow with the right medication. They are just going to have to find it. Problem is that some of these meds take months to work, some stay in the body for a while even after you stop them, and you are dealing with a person who often has an opposite reaction. You can't deal with that sort of thing at home. SignatureEvelyn (To reply to me personally, remove sox) Yeah, she was mortified at the outbursts. Well, Mom just called and the insurance (Humana) is discharging him on Saturday. We will have to pay the full amount to keep him there any longer. Gotta love healthcare in America. Dont know what the next step is..... > > Evelyn, > > [quoted text clipped - 54 lines] > who often has an opposite reaction. You can't deal with that sort of thing > at home. > Yeah, she was mortified at the outbursts. > [quoted text clipped - 4 lines] > > Dont know what the next step is..... Medicare/Medicaid? Can your Neurologist extend the time of his stay? There has to be some kind of an appeal, the guy is obviously not in such good shape. SignatureEvelyn (To reply to me personally, remove sox) Ken, >Well, Mom just called and the insurance (Humana) is discharging him on Saturday. We will have to pay the full amount to keep him there any longer.< You need to discuss his need for further care with at least a social worker. Your mother/family does not have to take him home if he can't safely be managed. Yep, they'll charge you...but the SW can give you an idea of what you're up against and how to apply for Medicaid. Sounds like the Medicare coverage time is up from the acute illness. Care is going to cost whether it is at home or in a facility. Think of the cost to your Mom, before you think about bringing him home in his present state. Each area/state has different resources and coverage criteria. You can also check with a county dept of aging or local Alzheimer's Assn. for resources. Thinking of you.... Beth > Ken, > [quoted text clipped - 15 lines] > Thinking of you.... > Beth Blimey! What happens if there is no one to look after him? Do they just toss him out on the streets? Glad we are in the UK, it might be diffcult to get care but at least you can get it. SignatureTumbleweed Remove theobvious before replying (but no email reply necessary to newsgroups) > > Ken, > > [quoted text clipped - 25 lines] > on the streets? Glad we are in the UK, it might be diffcult to get care but > at least you can get it. Tumbleweed, there is a real crisis in health care for old folks here in the US. It is shameful, but with the present leadership (hopefully to be changed next election) it doesn't look like it will get resolved anytime soon. Ken's best bet is to check with the county office of Aging or the Alzheimers association or other authorities in his area. The squeaky wheel gets the grease. So they might find a way to place his Dad, but they will bankrupt the family, take half their house and half of everything he has, to pay for his care before Medicaid kicks in. In the case of someone without a spouse they would get it all. There is such a thing as insurance available privately for long term care, but it is VERY expensive. Most folks take their chances or they arrange to move assets around legally before the three year lookback period for financial accountability passes. What is most unfair about the whole thing is that if you haven't got anything and you spent every dime like a drunken sailor all your life, you might end up in the same nursing home, getting the exact same care as someone who scrimped and saved carefully all their life hoping to put a couple of bucks aside for their children. So it rewards the ones with nothing and punishes the ones with something. Your system over there has its faults too, but the way it is here robs people of their dignity and robs their heirs, of whatever the old folks put aside over the years for them. One of the reasons Ida didn't want to leave her house for so long was fear that the nursing home would get it. She cried her eyes out at that thought. There is money for their care available through Medicaid, but they need to have no money left of their own for it to kick in. There is something very unfair about the whole thing. And if anyone thinks they can get around it, there is a three year lookback period in which any assets transferred are accountable. One must keep excellent records of every nickel spent and for what, as I understand it. SignatureEvelyn (To reply to me personally, remove sox) Oh, get an attorney that specializes in Elder Law. There may be a way to appeal the diagnosis and discharge within the HMO's fine print. SignatureAdelle D. Stavis, Esq. Remove the c in my name for me to see your reply > Yeah, she was mortified at the outbursts. > [quoted text clipped - 71 lines] > thing > > at home. Evelyn, I'm sorry to disagree, but after my FIL's experience, my personal feeling is IT COULD be the medications, dosages, and/or timing of when they were given. Just as IT COULD be the progression of the disease itself. The only way to know for sure is to try another location. My FIL wound up being admitted for a psych eval after his cardiac incident (as we waited for a NH placement. He was in one nursing home for about three weeks and was readmitted to the psych ward about three weeks later. He was there six or so weeks because my MIL didn't realize the social worker wasn't making his case a priority for NH placement. Then he spent his last few months at the NH out in the countryside. In the psych ward (2 different times) and at the 2nd nursing home, my FIL had no violent outbursts (after the first one right after being admitted to the ward). But he had two at the first NH within a week's time (they refused to take him back). Given the medication orders never changed, I'm guessing the dosages/blood levels had to be constant and the NH wasn't careful about making sure the meds were ingested on schedule. If your Dad goes home, there should be a 24 hour presence of help, in addition to your Mom's presence. A different facility might be a better placement. Even the psych ward, if it's a good place. SignatureAdelle D. Stavis, Esq. Remove the c in my name for me to see your reply > > > Evelyn, [quoted text clipped - 55 lines] > who often has an opposite reaction. You can't deal with that sort of thing > at home. Adelle, thank you for pointing this out. Your actual experiences are far better as a reference than my speculation. SignatureEvelyn (To reply to me personally, remove sox) > Evelyn, I'm sorry to disagree, but after my FIL's experience, my personal > feeling is IT COULD be the medications, dosages, and/or timing of when they [quoted text clipped - 86 lines] > thing > > at home. >I've been under the impression that AD progresses slowly. I suppose I have >to deal with the possibility that this is false. You are right about me >wanting him back to his manageable state. It's hard to let go of that hope. There are so many complicating factors surrounding dementia that you can never forsee a timeline. It would have been nice if my Dad had taken a longer route but I suppose once the decline started, he (or He) felt that 3 weeks was long enough. So, on a very unpleasant note, do you know what your Dad's final wishes are? Things such as feeding, autopsy considerations, etc., should be discussed with the doctors involved or you should at least have a plan. That is, if your fear materializes. >I fear he is not going to make it much longer. Like Evelyn says, let the home/hospital deal with his medical issues first. I know you'll do what's in his best interest but things can get a little foggy at times. Hang in there, Darryl. My MIL's illness seemed to slow down and speed up at random. She would have long periods of relative stability - although in retrospect, she was doubtless deteriorating in ways not apparent to us - followed by periods of fairly rapid decline, only to settle into a new plateau. All of us in theory have all kinds of extra capacity and redundancy in our nervous systems. Supposing you have 100 possible neural pathways for a message to get through for a particular action - it might not be obvious to anyone that you are going down hill until 95 of those pathways are destroyed. Or maybe not until the last pathway winks out, and some key ability seems to vanish overnight. We also rarely grill and test our loved ones, so being in a family relationship on the domestic scene with the person might not be the best setting to really see the kind of subtle and relentless deterioration a professional might be able to detect i.e. just because we can't always notice the changes doesn't mean they aren't going on - maybe whats being destroyed are non-essential abilities. Mary G. > He is declining rapidly and I want to intervene somehow. I just > dont know what to do. > > I've been under the impression that AD progresses slowly. I suppose I have > to deal with the possibility that this is false. You are right about me > wanting him back to his manageable state. It's hard to let go of that hope. actually, the two things you can count on about these horrible dementias: they are totally unpredictable, and the condition rarely gets better for long. it's hard to let go, but that's how this horrible disease works: the person you know and love is gone long before he or she dies. Hi Ken, snip > stages. Put him on Exelon. I'm not sure what to do about the swallowing > issue. Up until him being admitted to the hospital there was no history of > violence or demented agitation. When was your Dad put on Exelon? My Mom had some major problems adjusting to it. She needed a full meal before taking a dose. We also delayed upping the dose by about 6 weeks, each step, to give her system time to adjust. Could he have trouble swallowing because he has agitation and soreness from gagging from the Exxon? That would make me irritable and want to strike out if I couldn't put it into words that I was feeling awful. Are his incidents of agitation within a few hours of taking the med? Does he get calmer after awhile since the side effects aren't felt so much? Does he need to eat lots before taking the med? What dose is he at and how long between upping the dose? Last year the NH my Mom is in upped her dose from 3mg 2X's daily to the 6mg 2X's daily. They SKIPPED the 4.5mg 2X daily. I spent 3 months trying to find out why she was acting up and throwing up all the time. Finally we had a healthcare plan meeting and they told me what dose she was on and I went ballistic. By that time tho we had her on some anti nausea meds(I don't remember what it is but I can check to see what it is if you want) and she seemed to have "settled" into the dose by that point. In my experience, like Mary's the ebb and flo of the disease is sporadic but such major declines usually have some reason. It's figuring out the problem that takes so long since it's basically a guessing game. Did you call the AD crisis center about your Dad? The site looked promising. -- Mare mfcoleman@THEOLEmindspring.com http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm alt.support.alzheimers' FAQs and Stuff Pages > Now, he's out of control. The nurses just stick him with Adavan if he > starts acting up. He's dehydrated and looks like hell. Not eating or > drinking much. have you read the pharm data sheet for ativan (generic name Lorazepam)? see http://www.mentalhealth.com/drug/p30-a04.html it appears that "airway obstruction" is one of the problems of overdosage. just curious why they used ativan instead of haldol (Haloperidol) see http://www.mentalhealth.com/drug/p30-h02.html how can the (expletive deleted) insurance company send him home when it's *not safe*? >> Now, he's out of control. The nurses just stick him with Adavan if he >> starts acting up. He's dehydrated and looks like hell. Not eating or [quoted text clipped - 7 lines] >it appears that "airway obstruction" is one of the problems of >overdosage. It also exacerbates one of the conditions from which many AD sufferers will die (aspiration pneumonia). >just curious why they used ativan instead of haldol (Haloperidol) >see http://www.mentalhealth.com/drug/p30-h02.html Many new doctors won't consider old-school anti-psychotics but rather choose to go for something like Seroquel or Zyprexa, which Ken's Dad is on now. Generally when a patient is acutely psychotic, they first choose sedation followed by the anti-psychotic. >how can the (expletive deleted) insurance company send him home >when it's *not safe*? Hopefully the next American administration will do something about health care. Even if it means Dean and his "Aaargh" scream. Yes, the victory grunt has been all over the news in Canada as well :) Darryl. > Hopefully the next American administration will do something about > health care. Even if it means Dean and his "Aaargh" scream. Yes, the > victory grunt has been all over the news in Canada as well :) > > Darryl. I can hardly wait. The present administration has only been interested in helping themselves and their friends at the expense of all of us and our children's children's children. SignatureEvelyn (To reply to me personally, remove sox) Hello everyone. So many reply posts. I don't know where to start. We found another AD home for him if need be. Half the cost of the current facility and our pastor recommended it. Dad does have a long term insurance policy that would kick in after 90 days. We are aware of the 3 year lookback asset move but I need more details. Will hire an Elder lawyer when the time is right. His PCP prescribed him exelon the day before he was admitted into the hospital. He never got to take it. I believe that everytime he gets the Ativan shot he looses a little more of his will to live. One of the side effects of Adivan is amnesia. Isn't that special? I do think that trying another location such as home will yield some answers regarding the meds. 24hr care is a must. We can always move him to the other facility. Last nights visit I found him on the floor mat (bed was lowered) in just a diaper. Had urinated. He will not use the diaper, tries to get up to use the bathroom. They are not watching him close enough. We got him cleaned up and back in bed. He had a fever around 100. Said he had to go again and I had them get him on his feet to go. He could barely stand. I spoon fed him the thickened applejuice and he had two and a half cups. He's also dehydrated. Skin on his hand does not snap back. I think he needs to be hospitalized again. He was supposed to go for a CAT scan of his liver/gall bladder today because of elevated liver enzymes in his blood work. Had a contrast liquid to drink last night before bed and orders to fast him this am. Well, last night when I got there the nurse said she tried to give it to him but he would not take it (I doubt she tried hard). I put it in his thickened applejuice and he sucked it right down. Then, this am they "mistakenly" gave him breakfast. Mom called the hospital and the scan had to be cancelled. Mom asked his nurse about rescheduling and was given the old "Well, isn't he supposed to be leaving?" runaround. They are so screwing us because he is a problem. He's not like all the other patients there. Most can walk, eat and are compliant. He is only on Zyprexa. No Aricept or Namenda even though I've asked he be put on it. Dr Smug is taking a very passive approach to his care. Their just not doing the right things. Just spoke with Mom. His fever broke and he's supposibly on his feet. Do the insurance companies not realize that AD is a vicious disease? What, do they not cover AD/Lewy Bodies/Parkinson's ect... How can they possibly consider him able to go home? Wrote this quickly, hope is all makes sense. My direct email is knwestremove@yahoo.com if anyone wants to email me. Thank you all for the input and advice. I really appreciate it. Ken > > Hopefully the next American administration will do something about > > health care. Even if it means Dean and his "Aaargh" scream. Yes, the [quoted text clipped - 5 lines] > helping themselves and their friends at the expense of all of us and our > children's children's children. >Hello everyone. So many reply posts. I don't know where to start. You can start by not feeling that you have to reply to anything! >We found another AD home for him if need be. Half the cost of the current >facility and our pastor recommended it. Dad does have a long term insurance [quoted text clipped - 4 lines] >everytime he gets the Ativan shot he looses a little more of his will to >live. One of the side effects of Adivan is amnesia. Isn't that special? Fortunately the IM ativan doses will be used acutely. Sedating someone to the point that they're comatose is obviously not a long-tern answer. If they keep it up, move him to the other home, especially if you've heard good things about it (in addition to the fact that it's cheaper!) >I do think that trying another location such as home will yield some answers >regarding the meds. 24hr care is a must. We can always move him to the [quoted text clipped - 23 lines] > >Just spoke with Mom. His fever broke and he's supposibly on his feet. So his temperature was probably related to dehydration? Did they check for an infection (either listening to his airway or chest X-ray)? The key is to make sure he's taking in fluids. I suppose an IV (a glucose solution, D5W or something) is out of the question so keep the applejuice going. As for Aricept or Namenda, don't worry about these medications until he's stable. Right now they may only complicate matters (e.g., if they upset his stomach he might stop eating). What's the Zyprexa dose up to now? Take care, Darryl. > He is only on Zyprexa. No > Aricept or Namenda even though I've asked he be put on it. You have to realize that neither of these drugs will have much effect for several weeks. You keep wanting to find a magic bullet to make him better. It sounds like the facility he is in is definitely NOT the right place, but I strongly urge you to NOT take him home unless you have professionals there 24/7 in case of a violent incident. Neither you nor your mother will be any help to him if he injures one or both of you. You are better off keeping him in professional care. BTW, there is probably NO WAY they can send him home with a temp of 100, given all the other things that are wrong. Your problem with the expletive deleted "insurance" company is partly due to the fact that you don't have a doc going to bat for him, so both the insurance slimeballs and the facility want him gone. 100% correct Dennis. SO frustrating. > > He is only on Zyprexa. No > > Aricept or Namenda even though I've asked he be put on it. [quoted text clipped - 16 lines] > the fact that you don't have a doc going to bat for him, so both > the insurance slimeballs and the facility want him gone. Dennis, I agree with you. I never ever want a feeding tube. My mother had one and it was just terrible. Probably kept her alive for 4 or 5 years longer, but in a fetal position, knowing nothing. I surely don't want that for myself. And I did not let them use one for Grayson. Gwen -- ================================================== Just for today, I will not sit in my living room all day watching TV. Instead I will move my TV into the bedroom. ================================================== | On Tue, 20 Jan 2004 09:34:27 -0500 in alt.support.alzheimers, | "Ken" <kwest2@yahoo.com> wrote: | | > Got him to the hospital, they did the test. Found | > him to be aspirating when drinking/eating. Recommended a feeding tube. | | oh, how comforting for a demented person who doesn't understand | what's going on! what in the hell were these folks at the | hospital thinking? | | better to talk to the folks at his facility about getting | assistance from speech therapist to diagnose the problem he's | having with aspiration and possibly suggest changing feeding | methods or foods. | | i'm sure glad that i have a Living Will that specifies absolutely | no feeding tubes if i'm mentally impaired with no chance of | improvement. that's the last thing i would want. | | what were his wishes regarding feeding tubes before the dementia? | | |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2009 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.