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Mom and I have an appointment with Dad's neurologist next week. It has gotten to the point where we are considering a move to a care facility, due mostly to his delusions. Dad is 80 years old and has been retired for over 15 years. He is now almost continuously obsessed with going to work, calling his job, going to the personnel office, needing someone to take him to personnel, to work, to the job site, to the hospital, to the doctor, etc. He is constantly on the move, unable to sit still. He paces the hall and circles the house. No matter how we answer him he has a response back that somehow changes the question he asked previously to the point where another answer is necessary. He goes around in circles! Several months ago this might happen two or three times a week in the late evening. Now its every day, for longer periods of time. Yesterday it started around 2:00 in the afternoon and never let up, even through dinner. As soon as I walked through their door at dinner time he asked me who I called (I tried to get him off track the day before by telling him I'd call and make sure personnel knew he wouldn't ever be back, which I'd told him I'd do already several times before), did I get a signature, what was their phone number, what was the person's name, did they need papers, he needed to drive by the workplace, etc. This goes on and on and on for hours, sometimes until he tires himself out and lays on his bed, usually at 9 or 10 at night.

And no -- and I don't mean to be harsh! -- his attention CAN NOT be diverted. That's an impossibility at this stage. And no, he doesn't have a UTI!

We need to do something. We want to keep Dad at home as long as possible. Mom still takes care of him and doesn't mind the physical part - she toilets him, showers him, shaves him, gets him to eat, etc. Its just this emotional stuff that's taking its toll.

Thus, an appointment with the neurologist. We plan to let him know what's going on and that we either have to make some type of med change to calm Dad's anxieties, etc. or we'll have no other option than placing him in a nursing home, which we don't want to have to do. Do we ask about changing meds? Dad was diagnosed 4 years ago with AD (possibly has Lewy Body Dementia based on what I've read and how he acts, which is also a question for the neuro) and has gone through a number of them already. Do we ask about adding a med during the early afternoon? Maybe one he's already on? I know the neuro doesn't want him drugged up, but what is worse? Meds or the constant stress -- to both him and his caregivers? Do we try a miniscule amount of the Zyprexa that turned him into a Zombie at a higher dose? Do we try stopping any meds? He takes Exelon patch (does it still do anything?), Seroquel in AM and PM and Sinemet three times a day, along with two prostate pills, baby aspirin and Vitamin D. Doesn't seem like much based on what others indicate their loves ones are taking, and that's been a blessing!

I know others have come to this point... HELP! Any suggestions about what we might ask the neuro?

Thanks for listening...

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Yes, even baby aspirin is 83mg and will block the other meds. With mom, we give the Xanax (only 0.25mg)/furosemide/metoprolol/potassium at 8 am and the aspirin at noon. If a med is twice a day, it should be 12 hours apart.
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If it were me, I'd take the list of meds to a good pharmacist (and there are geriatric pharmacists with advanced degrees that specialize in this - through the American Society of Consultant Pharmacists) to review his meds and how they're being administered. You can google 'find consultant pharmacist' to see where they are. I worked in a university pharmacy after I got my undergrad degree and quickly learned from the pharmacists there that docs often don't know squat about the meds they're prescribing. And as Veronica and Littletonway said, when you have multiple docs all prescribing and not having much time to review history or issues, it's a recipe for oversight and mistakes. I'd do that before your neurologist appt. Your pharmacist can tell you what to watch out for.
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pstieqman gave an excellent over view of your dads medications. It is very important these days to research everything for your self especially the side effects and interactions, time of day different pills should be taken before or after meals. Also which foods need to be avoided. really everything you can find out. Just because there is an up to date list of medications in dad's file it does not mean the Dr will read it, sometimes I wonder if some of them can read!
It is wonderful that you have compiled 25 pages for the Dr to read but think of it as a resume. Only the first page gets read before it goes in the trash. Try and condense it down to one page. I know the details are important to you but all the dr needs to know is some thing like this." Starting in mid afternoon my father is constantly pacing inside and out side the house. He repeatedly asks the same questions most recently concerning his job that he retired from 15 years ago. It is not possible to divert his attention. This continues till he has exhausted himself many hours later. Cared for by his wife of X years who provides all personal care and feeds him. She is capable of continuing at this time but is exhausted by his hyperactivity." if the MD wants details he will ask but he has heard the same story before and what you need to know is what can be done about it.. Your idea of a lower dose of the Zyprexa sounds sensible. Once he is used to it the dose could be slowly increased if necessary. you have really answered your own questions by asking us. Ask the Neurologist and don't leave until you are satisfied. Clearly your mom does not want him in a Memory Care Unit and they probably won't tolerate this agitation either. So he will do best if he remains in familiar surroundings and is given whatever it takes to modify his behavior. He is not a happy camper the way things are and the one thing we need for our loved ones after pain relief is for them to be peaceful.
Let us know how you get on, there is always something to learn from the experience of others.
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Just a hint, we know doctors have med lists of patients, if there are multiple doctors involved there could have been changes, allergic reactions, etc. We keep the list current (xcell format) and a new printout is taken to every appointment. We have never had it refused and each office always ask to make a copy for their files and thank us for keep info current for them. Just a thought! Good luck
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MamaBug -- thanks for your thoughts. Dad started out four years ago with Namenda and Aricept, when he could still take care of himself in many ways, but they caused way too many side effects. Namenda caused two months of continuous diarrhea before the light bulb finally went on and we decided the med was the cause. The diarrhea started several weeks after he began the med, which was one reason why we didn't immediately connect the dots. It stopped immediately after we stopped the Namenda. The Aricept also had some bad side effects.

pstiegman -- thanks so much for your thoughts. I'm sure the neuro has on file when the meds are taken, but may not pay attention to it or think about it. I've never really considered it because the neuro hasn't mentioned it. I've been taking notes on and off since January about the "weird" activities and have a type-written 25-page "manuscript" for the doctor. Will even the baby dose of aspirin block the effects of all the other meds? He takes it because he had a stent put in a blood vessel near his heart prior to his dementia (which probably exacerbated it). We took him off full strength aspirin a number of years ago along with about 5 other drugs the heart doctor gave him.
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Bring the MD a list of medications, dosage, times given. Bring the MD a journal of weird activities dates and times. Even a cellphone video of bad moments helps. STAGGER the medications, give the Sinemet FIRST, an hour ahead of the other meds. Ask why the Seroquel, because it interacts badly with the Sinemet and is known to cause hallucinations. Restlessness is common with Exelon. And aspirin will block all of them if it is given first. Timing of meds is incredibly important and MD's tend to overlook that.
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It sounds like he's sundowning from what I've read on the subject. My MIL has dementia but she hasn't started sundowning. The neuro may change or adjust his meds. My MIL is on Namenda and Aricept. She takes Namenda twice a day and Aricept at bedtime. The combo of pills seems to have helped her improve a little. She's taking better care of herself.
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