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I'm taking my mom to see a geriatric specialist to see if their expertise can help with memory problems. She wants to be proactive about her memory. She sees some of the issues I see about her memory but others, only I see.


Some problematic behaviors are:


- using pens and pencils to clean out her ears


- going to bed really late. She says if she goes to bed early she then wakes up in the middle of the night and cant easily go back to sleep.


- not understanding that her primary care doctor wants her to taper off of Xanax and that she needs to do it slowly and carefully. She takes it before bed. As I explain to her the time to take it, she says she wants to wait until 1-2am so she can sleep deeply for the whole night. Sometimes when we talk about bit, she dismisses everything and thinks it is stupid to even take it at all. A few times, I have found the pill on her bedside table - a missed dose for the evening.


- When home health physical therapy was here, she would repeat herself a lot about pains and previous diagnoses from other doctors.


Wow, writing this out is just he tip of the iceberg and I feel overwhelmed. It's hard to document each thing that seems to be a little off and may be due to memory issues.


The clinic has a memory form that my mom filled out and I am filling out my own version because she can get defensive about what I observe, and I find it best to let it go rather than get into an argument over something that is impossible to reason out with her due to any possible cognitive decline.


I feel a bit stressed, I keep feeling my own sense of pressure to try to capture all of the issues I am seeing so that doctor can get the best picture of her memory. But that alone is overwhelming and difficult to pin point. Her memory is very good in general, but there are days when it is completely off and when her mood is difficult to deal with. She is usually a complete sweetheart, but at times she can pick on me and bully me. Generally, those times involve an ear infection or UTI or cold, etc.


Recently, her primary has put her on Zoloft and that already seems to be helping. Also, she has a referral for sleep apnea, which I very much believe she has based on her snoring and shallow breathing patterns.


Any advice or sharing of experience is very helpful. So far I have not been impressed with the mini mental exam, it has been easy for both of my parents to pass it, and my dad has been unable to pay the bills for three years. Obviously the test does not capture the depth or complexity of dementia. My dad has it and it is undiagnosed AND he's in denial. My mom at least wants to be proactive and protect her memory as best as she can.

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Be completely honest and upfront about what the testing is for and why it must be done now. There are many things you yourself can do, google some tests if you are curious. The questions and the words and then wait and ask repeat. The draw a clock set at a certain time, etc. You already know there is impairment; I doubt you know the extent. And it will get worse. So be honest about what is happening step by step. There is no way to make this all good. There is no way to make this all happy. But it must be done.

After you have done some simple tests with Mom write out the results for the doctor. ie cannot remember three words after 3 minutes or cannot draw a clock. Write down anything you notice JUST as you did for us. Share this information with him openly. Be sure the POA for health care is there and that doctor and you and Mom can all share information now. Do not do this secretly but with Mom there. Her reactions with doctor will tell a lot. Be upfront and honest.


Be certain now that all paperwork is done and that you know wishes for advanced directives, POLSTS, that there are plans for POA when and etc. That you know where everything is, what is entailed with taking on these duties and whether you choose to be the responsible one.
So sorry for all you are going through. This isn't going to get better or easier.
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Rattled Aug 2019
You’re SO right. Great advice and your last sentence is spot on. I think we all hold onto the thought that our loved ones “will be the exception” or that they will magically start improving in their cognitive function and problematic behaviors. It just doesn’t happen. It’s like trying to stop Niagara Falls from flowing with a roll of paper towels.
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This is going to be a marathon, not a sprint so make sure you include self-care in your daily routine. I realize your life now is full of medical appointments and changes and not sure if your parents live with you or vice versa, but there are important things you should work on little by little while their memories are reasonable. As AlvaDeer suggested, make sure someone local, responsible and trustworthy is assigned their Durable Power of Attorney (someone younger than them). Also, Medical Directive, will, etc. I'm assuming your mom (and dad) signed the HIPAA waiver at the doc's office so that staff can legally discuss your parent's medical info with you. Also:

- the financial PoA should know their banking info; what investments they have and where the paperwork is; insurance papers; pre-paid funeral paperwork etc. Their sensitive information needs to be locked down so that it is protected against abuse and scammers.

- go through their photos with them, for fun and to write down names, dates, places

Your plate is full so that's enough for now. Many are in your same shoes. Wishing you peace.
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Xanax can cause all sorts of cognitive issues, as can depression and sleep apnea. Combine all 3 together, and you may find yourself believing your mom is suffering from dementia when she may not be. It's pretty hard to breeze through the mini mental exams if a person is really suffering dementia. I knew mom was mentally declining in 2016 and had her tested for dementia when she was hospitalized. She scored an 18 out of 30 on the mini exam and couldn't draw a clock, never mind show the time. She was diagnosed with progressive dementia at That time. She was doing ok though, functioning well, although incontinent and suffering insomnia in cycles. This past May, after a bout of pneumonia and a stint in rehab she scored a 10 on the MOCHA test and had to go from Assisted Living to Memory Care. She still has times of great lucidity, but very strange behavioral issues, angry outbursts and agitated verbal and physical activity. Dementia does not just involve memory.....it presents itself in many different ways. My father, for instance, did not suffer from dementia but could no longer handle the finances either. There can be a decline in mental function in the elderly without dementia being involved.

A real sign of dementia for most is when they have no concept of time. Mom is always off on what day of the week it is. She has no idea what time of day it is or that 6 pm means I'm eating dinner so she shouldn't call. Phones and remote controls become very confusing to use, thermostats are foreign, anything that has controls or buttons is problematic. Mom could work the DVD player in April and by May was clueless. I had to turn off the answering machine because she couldn't remember the password or how to listen to messages. It's getting more and more difficult for her to make phone calls or to remember to press the off button when done.

Repeating the same story or sentence is common as well. Having to repeat yourself is very common, sometimes 10x in one visit. My mother suddenly started introducing me as her mother one day. Yet she could carry on a conversation from pure muscle memory. The Hello How Are You type of chats that she'd had socially for decades were and are still intact. This is the dichotomy of dementia.

Don't feel like you have to tell the doctor every little thing they're doing or saying that may seem off. Its a good idea to keep a noebook of happenings so you can remember the incidents when at an appointment. The mini cognitive tests ARE accurate enough to establish a baseline and to measure decline from that point forward. The decline can be pretty slow......you may notice a step down at some point that seems pretty big....but it can take years to get there.

A UTI will notoriously make the old folks act unhinged, every time! As soon as my dad started acting the least bit off, I'd have him tested for a UTI and it would be positive. Like clockwork. Same with mom.

If your mom wants to preserve her memory, get her some crossword puzzle books and sudoku games, things like that which help keep the brain working. Cut down on sugar intake and keep active with exercise is also good. Alzheimer's is now being called Type 3 Diabetes and thought to be related to high sugar intake and insulin resistance. Who knows?

Hope some of this info was helpful. Good luck!
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TaylorUK Aug 2019
I agree with puzzles,colouring and other activities that help keep the memory active. I totally disagree with your comment "the mini cognitive tests are accurate enough to establish a baseline". My mother sails through these every time I ask for them to be done because they are too simple and factual, ask her to reason or explain anything which mini tests don't do and she varies from day to day between totally capable and totally incapable. She has been living with us for three years and is just about to have a third Op for the same problem, the other evening she told my husband she moved in just before Christmas, had never heard of the consultant, hadn't had any previous operations and had no idea where she was going the next day - but she passes all mini cognitive tests - so personally I think they are as much use as a chocolate tea pot. Getting someone outside to see her decline is very very difficult because she can usually hold a normal conversation for the short 15 minutes or less they stay, only our friends who drop in at random slowly managed to put the picture together, and NO she doesn't have the go to UTI.
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Document all the behaviours you see and have it delivered to the specialist marked in big letters to be read before appointment with Mrs x. He/she will then have some background and be able to work relevant questions in.
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jjmummert Aug 2019
Spot on. I kept a record of my mom's behaviors on my computer and it was invaluable to her primary care doctor and for the neurophychologist who did her tests. In fact,, the final evaluation contained a lot of my written observations and concerns. I have POA, but anyone can send written concerns to a doctor even though he/she is limited to whom they can share information.
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When I take her to the doctors office. After we are called into the room. While we are waiting for the doctor to come I excuse my self saying I have to go to the bathroom.
I leave the room, and I go talk to the nurse or doctor and explain that you would like to tell them what you have observed. Explain to the nurse that if you say these things in front of your parent they either deny it or gets upset that you told them.
then just go back into the room sit with your parent or wait for the doctor to come in.
And cross your fingers and pray you do not have to use a bathroom since you have already been!!!!!
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Type out your concerns, print and either mail or fax to the doctor’s office. I’ve done this, as I’m not allowed to go with Mom to her doc.
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I took Mom to a geriatric Neurologist, and although their tests seemed simple, it really helped us discover where she is with her Alzheimer’s. That way you know what you’re dealing with. My Mom refuses medication for depression or Alzheimer’s, so I try to respect that it is her personal choice. It’s too difficult to babysit her with regards to things she should be taking or doing. If Mom is eating everyday, not falling, and is safe, I could consider it a good day!
My mom has the opposite sleep problem, she goes to bed at 7pm, so she’s up in the middle of the night wanting breakfast! Hard when you’re in an assisted living facility..
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gdaughter Aug 2019
Do not regret the no pills route, I don't, and the best neurologist in our city with years of experience was not opposed and basically in agreement with me considering mom's level of functioning and age at 90+. The risk of sign effects vs. likely low benefit just didn't make it make sense, not to mention the expense...and mom being her age...many years back when they went on medicare never signed up for the drug plan. SO although there is an emergency sort of appeal process, right now they would look back all those years times all those months...and there is a penalty for each month...it would be outrageous. So we're just letting it be for now.
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I always type out a scenario of all of the concerns that I think the doctors need to know. My father in law lies directly to the Doctor and is so convincing that it makes me think I'm the crazy one. When I have the notes with me, I give it to the nurse and ask that they have the doctor look it over before he or she steps into the room. So far, I have had nothing but positive response from the physicians and my father in law's real needs are being met.
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Your mom needs to be seen by a neuropsychologist and have a completely battery of tests.  Depending on where she lives, determines available professionals.  If you want to email me, I will reach out to my colleagues across the US and try to find some recommendations.
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Someone here suggested I email her drs. If you have an electronic chart ( I’m sure various names but the one thru our hospital system is My Chart), I did it via that and got a positive response from one , an iffy response from the other but when she went for a test with that one she was uncooperative and they did recognize the dementia.
I wonder if some of their reticence to talk without the patient is due to HIPPA etc. Dealing with dementia, you’d think they’d know it’s going to freak them out and chaos will follow but I’ve yet to be with any Dr. who didn’t want to include my mother in the conversation. She never admitted my stepfather had Alzheimer’s, even in the last stages, which I’ve told the Drs. but they insist on acting like I’m nuts until she slips up and they see he in action. Then it’s “oh, now I see it” lol
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gdaughter Aug 2019
Yeah...if mom signs off on POA for health care or they just get permission/statement to discuss with family, it will not be as big a problem...
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Wow...so many issues, and just your note here seems to capture so much...including the issues of xanax and zoloft...and with memory issues and her not comprehending or not necessarily wanting to taper, I'm guessing someone might want to have her be with someone or in a controlled setting to make sure she is safely weaned off. The drugs could be a contributing factor and so could depression I'm wondering? I'm hoping that you're seeing not just a geriatric specialist, but going direct to someone who specializes in alzheimer's/dementia like a neurologist and/or psychiatrist who will be better trained on the above. I'm glad both of you will be filling out the paperwork as they will be able to compare your observations with your mothers. They've seen it all before. When you return your paperwork, I'd include a note like you have provided here. Or you can send something via fax which may be more reliable than snail mail...or just pass a note when you get there with her. Or call the office and ask what they suggest and share your concerns. They had a good sense of things with my mother; when they took her in another room and attempted to screen for depression she balked and was not cooperative so they dropped it, but they had it pretty much figured out. At 94 or so at the time, with no meds beyond a BP one, we just let it go...she's still with us and will be 97 next month...
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When you speak of taking your mother to a geriatric specialist , do you mean a physician whose speciality is treating older adults? The reason for the inquiry is that an avenue to pursue with your mother is an evaluation by a geriatric psychiatrist or a neuropsychologist. These individuals have extensive training in the administration of various cognitive tests and will allow for more time with your mother as opposed to a regular office visit with a physician for medical needs.
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Look for a Memory Clinic near you. They will do a complete evaluation both mental and phsical
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Neuropsychologist is the doc you need to see. The full neuropsych exam can last up to 5 hours, and will give info about everything you’re describing, and more!
You will be present for the first part of the exam, and believe me, the doc knows when the elder is “lying” but believes themselves. They also know when YOU are observing things the elder is denying. After a 5 hour time period, these experts have a really good handle on behaviors that you have seen and some that you haven’t. The outcome determines the course of treatment.
For my dad, the outcome was that he was NOT getting his drivers license back...(something he thought he’d be able to fool the doctor into signing off on) and taking Aricept. The doc also suggested assisted living, which he scoffed at.
i had the same exam, at 50, because of a brain tumor... In all seriousness, I have a baseline for my cognitive abilities, and because dementia runs in my family, it will be useful in the future. (Turns out I was fine) As for my dad, he’s not getting any better, but I do think that the answers and course of action was helpful. Taking him off the road was paramount, and it made me feel better knowing we did the right thing. He was worse than we all thought, and he was good at manipulating conversations to make ME feel like I was the crazy person for thinking he was a danger on the road. The neuropsychologist saw RIGHT through it!
Good for you for being proactive and noticing small changes, and trying to pinpoint what’s causing them. Behavior changes are SO hard sometimes, and unfortunately, the “dementia” diagnosis is used to explain many of them.
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Whichever doctor you see, make sure they listen to you, and don't dismiss your observations and concerns. You might write a letter to them before your mom's appointment, so they get the full picture. I did that when my mom had Alzheimer's, and it helped. You might need a cadre of doctors: maybe a geriatric psychiatrist and/or a neuropsychiatrist. I'm not a doctor, so I'm just guessing here. Alzheimer's is just a complicated and complex disease, that different specialists might approach it in slightly different ways. You could see one specialist, and if you're happy with the results, then fine. If you think she needs another viewpoint, you could follow that route. Before my mom got Alzheimer's, the only thing I knew about it was that it could cause memory issues. I thought, "I'll just remind her who I am," but that really wasn't a problem. Hallucinations, paranoia, illusions, delusions, those were problems, but I had to remind myself that "ill"usions was probably the best term, because it was an illness, after all.
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Hi! In dealing with my grandmother, we had a couple of frustrating experiences before we found a doctor who could really address her needs and adequately assess her. Gramma's long-time family doctor was not equipped to diagnose her dementia - not sure if he didn't have the right knowledge or if Gramma was really good at pulling it together long enough to throw him off the trail. The next doctor, also a family doctor with no geriatric specialty, saw some of the problems, but was ineffective in dealing with even the basics -taking her driver's license away, assessing a need for services, and diagnosing dementia. Someone (I don't know who, but am very thankful to him or her) suggested her current doctor who is in a family practice but specializes in geriatrics. At the very first visit, her moderate-to-severe dementia was diagnosed, her medicines were adjusted, her license was taken away, and the doctor helped my mom to come up with a care plan to address her daily needs. I find it particularly meaningful that her initial dementia diagnosis came in at moderate to severe. I don't think she just woke up that day with dementia at that level. It was a progressive decline that was simply missed by her former doctors. And some of the medications she was previously prescribed were exacerbating the dementia-related symptoms. Bottom-line: it's a lot harder to buffalo a specialist, and infinitely valuable to have the benefit of their specific training and knowledge on your side.

In order to prepare for her first visit to her current doctor, I wrote a 5 page report that I emailed before her appointment. I included factual observations of her physical capabilities, list of medications and how she took them, diet, habits and behaviors using my own experiences with her and those from family members. This allowed the doctor to have a little bit of knowledge going into the appointment. Obviously, the doctor's own observations were the most critical, but the information I provided helped to add context and gave them some idea of where to dig a bit more in their questions for her. I think that really helped.
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I’d ask first who is her primary caregiver and second who has POA. Discussing these issues in front of her may not be the best plan. Write out you’re observations and mail to dr(please keep it short and to the point) before her next appointment. You’ll see a difference in some ways, they are working blind without info from family.
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The mini test is exactly that - mini. It might not catch dementia or another cause for the symptoms observed.

Getting a good thorough exam is the best place to start. Observations are good to bring along. There are many medical issues that can present as some form of dementia and many of these are treatable. Reviewing medication would be a good idea as well. If it is early stages of dementia, many people can "fudge" their way through an exam or even the tests.

Before our mother exhibited signs of dementia, I happened to stop by her place on my way to work. She was in a miserable state and clearly confused/befuddled. In her case (we went to the ER and she spent the night in the hospital), it was most likely OVER-hydration. Often people consider under hydration, but drinking too many fluids can wash out the electrolytes in your system (keep in mind that the 8-8oz glasses of fluids suggested should include fluids you get from FOOD as well!) One of the symptoms of low potassium is "Abnormal psychological behavior: depression, psychosis, delirium, confusion, or hallucinations." She was drinking too many fluids. Once her system was properly restored (drip bags), she returned to her normal nasty self!

As for the mini-test: we recently changed doctors (it was planned anyway, but just in time as PCP retired!) Mom was given the mini-test (she is in year 3 MC) and couldn't pass it. Back when this started, she might have been able to squeak by. They gave me the same test when I had my checkup a few weeks later. Mini is the word! When I suspected dementia for what I observed, we contacted an aide agency so we could start with minimal (1hr min) sanity and med check . Before scheduling anything, they sent a nurse who did a pretty comprehensive test (covered by Medicare.) She made recommendations for a locked/timed med dispenser and other suggestions to get us started. The plan was to increase aide days/times as needed, but after a few weeks she refused to let them in.

So, be sure to have a full thorough exam to ensure this is not some treatable medical issue. Some of what you have described could be attributable to dementia, but could also be some other underlying issue. Just testing her cognitive ability may miss any other treatable condition.
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Starting with a new doctor I would write a letter, put in an envelope and hand off to receptionist and ask her to give to doctor. In the letter ask the doctor not to tell my mother.
The doctor referred her to be evaluated and diagnosis was Lewy Body Dementia.
Now the medical group has her set up online and I can text everyone involved with her case and they have access to the information.
My mother is very capable of putting on a show for the doctor. Without my info to him he would have no clue about her problems.
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Silver Lining,
How did the visit go to the Geriatric Doctor?
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1st make sure she doesn’t have a chronic UTI. My mother had one and what I thought was memory problems wasn’t. It was just a chronic UTI.
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Even if you do not have POA for her, you are still free to tell or write the doctor about your concerns. However, without the POA, the doctor is not free to discuss things with you, but don't let that keep you from telling the doctor what he or she needs to know.
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A POA is not absolutely necessary for a physician to speak with a family member. However, for a physician to speak with a family member, he or she needs to establish if the person has a durable power of attorney which is for both medical as well as financial matters. If there is no durable power of attorney, physicians can speak to whomever the patient allows sharing of information. If the patient is not able to give permission, physicians and other staff often will speak to the emergency contact followed by closest relative. If there are multiple children, the oldest child is first to receive information.
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Dora1956 Aug 2019
I found the POA to be of utmost importance! I am a twin, 22 minutes younger. I am also my Moms 24/7 caregiver & when I had to start dealing with her insurance & certain medical (neurologist) physicians I found they would NOT speak to me w/o the POA. My Mom also did NOT have Medicaid so when I started her application to get her long term Medicaid 1st I needed POA.
Maybe it’s different states?
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While your parents are still competent to sign. You need to get that POA , Trust, etc. Talk to your parents, talk to an Estate Lawyer. If you wait to long, then you will have to go through the courts. Next Educate yourself on Dementia. It will help you later on, because Dementia only gets worse. You can share information with the Doctor about anything , but unless you have a POA or your mom allows them to tell you things the Law won't let the Doctor give details about his patient.

In the beginning of my mother's dementia I had to hide her car keys and then disable her vehicles and then hide my car keys. Then take her credit cards and her sss number card. She was giving out her info to anyone who asked for it.
You have to do what ever you need to do to protect them. You have to live in their world and the logic is slowly leaving that world.

I had her primary make an appointment with a neurologist and with a few test and a brain scan it was officially diagnosed.
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A geriatric specialist usually has a whole team of people who work with him/her. They evaluate your mom's health as well as her social, family, mental, and emotional status. They will ask for her directives. You will be included in these interviews if this is done correctly.

1. Expect to be there for most of the day. Find out everything you need to have ready, including other family members before you arrive.

2. What are your goals with your mom? I know it's a hard question but it has to be asked. What are you hoping for and what do YOU need? Write these ideas down so you can see if this team can give you the support you need. What are YOUR top three talking points?

3. Please eliminate the ear infection, UTI, or cold to be sure this is not the cause of your Mom's downhill slide.

4. I'm super excited your mom is taking her zoloft. Just be sure she does not quit taking it abruptly as the side effects can be awful.

5. Don't worry about the Xanax. Your Mom's physician(s) will figure this out for you. Are you worried that she will become addicted to Xanax? If so, again ask yourself your goals here. If she gets a good night's sleep with a nightly pill to do it, is this OK with you? If she goes without the pill and can't sleep, is this OK with you? At certain ages, we hope our parents are comfortable. Is someone at 80 or 90-years-old on this pill the same as a 20-year-old addicted to Xanax. Figure out what works best for you and your Mom.
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Sometimes it is not uncommon for the patient to take matters into their own hands. My SIL with Alzheimer's took herself (wrongly) off her Aricept "because it wasn't helping" so she said. She is not the one who gets to decide that as she is not of lucid mind. Recommend that your mother see a geriatric neurologist.
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Dora1956 Aug 2019
My Mom was on Aricept but then after her stroke they put her on razadyne. I’d like to try going back to aricept to see if it makes a difference as my Mom has gotten so much worse. They had her on a combination of razadyne (Galantamine) & Mementine. I had to take her off the Memantine.
Yes, I suggested a neuro too for a cognitive test.
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Request a cognitive test & Xanax is really bad for one with memory problems. Easy for me to write about now because this sounds like the start of my Moms beginning. So sad...I’m still logging as everything about my Mom has gotten worse. You’re Mom sounds like mine, very combative.
My Mom WAS diagnosed with Dementia from the cognitive testing. Her neurologist was giving her Xanax for the combativeness & sundowners that comes on & makes them 10x meaner! In reading your questions & comments I could truly feel your anxiety. I still get it. After my Mom was diagnosed she had a hemorrhagic stroke & lived...that’s when I became her 24/7 caretaker. What a long road. You truly have to be a special kind of person to do what you do.
Definately start tapering the Xanax. My Moms NEW neuro now has her on seroquel. I give it to her @6:45 & she’s asleep by 10. Thing is she can’t get up & try walking around...she will fall. Sorry, this is way more info then what you need until you find out if she’s got the beginnings of dementia!
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notrydoyoda Aug 2019
You are so right! HIPPA privacy laws are federal laws. Thus, it is highly likely that durable POA for finances and Medical POA for health are required in each state.
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Just had "the visit" with a geriatric specialist who did the MoCA test for cognitive ability. As your mom, my mother has been on Xanax for the past 6 months and the specialist wants to wean her off if possible..... then do another assessment test in October. She scored lower than he had anticipated and wants to see if the Xanax is in any way partly responsible, and the fact she claims her hearing aides are just a month old and she's still getting used to them (she's had them for four months and she seldom wears them). I honestly can't see her scoring higher as she's been on a gradual decline since her hip surgery.

Side note on the Xanax...you will hear a lot of negative comments about it being prescribed for the elderly, but mom is 89 and it does help keep to keep her calm. She hallucinates with or without, so for everyone's sanity I don't see the harm. She is on a very low dose and takes it only before bedtime. I do understand concerns about stopping it abruptly, and maybe your PCP has a different replacement he would rather try?

The specialist will take you aside and ask questions about her behavior, address any concerns you may have, and offer suggestions and advice as to how to move forward. Mom was diagnosed with moderate short term memory loss dementia.
Since she had MRI/CTScan's done within the past six months he will study those and perhaps change the diagnosis depending on the findings.

It's a long process and be prepared for a lot of questions ...... they dig deep as they want to get as much information as they can to completely understand your situation, Best of luck....will be looking for a follow up.
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