How do I prep my MIL for an upcoming neurological appointment discussing her mental decline?

Perhaps the best approach would be to the doctor rather than MIL. Send a letter setting out your concerns before the appointment. Take a copy with you to the appointment, and hand it in just before you go in (just in case the doctor didn’t read the first one). You can tell the doctor what you think would be the best approach after the test – to tell her the ‘bad news’ outright, to soft pedal on it, or to stick to advice about how to go forward. Doctor doesn’t have to ‘diagnose dementia’, perhaps just say something like ‘you’re starting to get mixed up a bit, but your DIL can set you straight if you are worried’. Good luck, and best wishes to all of you!

The neurologist needs to assess your MIL in her natural state, so don't prep her. It's a test of how she is day-to-day, as opposed to one in which you want her to "do well," so to speak. (PS - this is on the basis that she is already being kept well-informed, as she clearly is and well done to you.)

In terms of how to describe recent decline, keeping a journal with examples such as the one you've given is a good idea. I'm sure you know better than I do that Parkinson's effects can sometimes become unfortunately florid and the neurologist will no doubt want to nip in the bud anything that seems to be developing.

Medications: let "take your medication as prescribed" be your mantra. Parkinson's meds are finely adjusted right down to timing and mustn't be mucked about with. Reassure your mother that any untoward symptoms will be reported regularly so that her doctor can do the adjusting, but she must stick to the regime.

I’d suggest that you take all the details in your post and make them into a tight bullet point list / timeline and do it as a 1 page list to give a copy to the intake nurse and then to the MD when he comes in to see her. You have your own copy with you too. On the wandering, try to put down what time of the day this was, if weather could have been a factor (like dark rainy day), and what her initial response was when she was found and taken back to the house or to her room

On page 2 I’d have that be a list of all her meds and the time of day she takes them. If meds are not always taken with oversight, put that in.

on those OCD behaviors, maybe put them into a group, if similar repetitions. My mom had Lewy Body dementia and stayed real competent and cognitive looking for a long long time (like into her 90’s) but it was illusionary, she had issues with “executive functioning” so like the ability to process info sequentially. Like she could add a column but could not balance a checkbook, she could do a grocery list but could not factor in she already had a line up of Smuckers in the pantry. She would do the checkbook & grocery list over and over; she felt something wasoff but couldn’t get past the disconnect. There was a processing info problem. If you notice anything like this with her, put it on the list.

Personally I would not try to prep her, let her be herself. I’d make sure she was as rested as possible and into an outfit she likes & comfortable in and had breakfast/lunch. If she’s the type who gets her hair done regularly, get that done the day before, so less fret on “how do it look”.

Logistics: think through just how much stuff you can leave behind…. R— Like she doesn’t need a big purse & or jacket.
-Make sure she / you have all her insurance info and make a copy of it with her ID all front & back so that you hand it over to the front desk. No searching for stuff.
-I’m a big proponent of wearing a backpack if I have to accompany anyone to the hospital or a medical appointment; keeps your hands free, allows for a iPad and magazine to be carried, has water bottle tuck in, place for snacks, keeps your hands free (yeah twice as this can be very important).
- if the appointment is at a clinic or in a high rise medical center, they may require her to go into a wheelchair if she seems to be unsteady and isn’t coming in using a walker. If she has a walker but doesn’t use it regularly, please please pls try to do a practice run with her & the walker over to Target or another store other with a big safe parking lot and get her in&out of the car with the walker and into the store and then return.

Neurologist who deals with geriatrics knows what to look for. It’s pretty hard for an elder to “show-dog” with them as opposed to a family medical MD. Also you - yourself - try to get a good rest in advance so that you too are all good and organized. Let us know how it goes, we all do learn from each other.

I wouldn't worry about it too much. The people there know how to handle it. Just let them do their job. Please, don't stress over it. It's not anywhere as hard as you think it may be. Just tell your MIL it's a doctor's appointment.

I agree with the others - don't prep her. It's another doctor's appointment. Do prep the doctor ahead of time. Document what you have told us as succinctly as possible and get it to the dr. ahead of time. Then relax. I suspect your mil may pick up signals if you are very stressed

We tried to explain how my MIL was acting at home but he paid no attention to us. As a result, we think he refused to place a proper diagnosis in her medical records. I’m. Not sure this made a difference except maybe there could have been medication prs robed that could have helped. She ended up with 3 911 calls in a week. The last was for a severe fall and injury. The emergency room had her admitted and had to restrain her because of violent behavior. She’s in memory care now.

You can certainly call the office and talk to his assistant. You might send them the symptom sheet before you come, or bring your own along. Many doctors will take this information and probe gently into the symptoms you describe. Remember you can provide information, but the doctor usually cannot discuss the patient with you without their presence or permission. I notice the smart doctors seem to have the family member present with an older, somewhat limited, patient and watch the family member's face as well when asking questions. I have found a raised eyebrow or worried look leads to sympathetic investigation by the doctor.

I would stick to presenting the ”plan”. (You obviously have control and you have been handling her adjustments) I would present the current situation as “just” part of the ongoing plan for her well being. New changes need adjustments to meds and levels of care. A “let us handle this as a team that loves you and will be with you through it”

My father wants to hide it all from the doctor because he wants his drivers license back. Which I know is never going to happen. When I take him to the doctor he says things like “the doctors are all against him” and you have to “be on my side and tell him I’m fine to drive”. He asks me what kind of questions he is going to ask me and I know it’s because he wants to practice. So we practice. I know when he gets in the room he isn’t going to remember 90% of what we practiced anyway, but it gives him comfort and a sense of security and control. My dad is very controlling. I speak to his doctor ahead of time and tell him what is actually going on with my dad and whatever I say in the room is to keep the peace with my father so he will continue to trust me and let me help him, and that if I back up my dad’s claim that he is doing well, you now know the actual truth and that I haven’t lost my mind. If you say you spoke to me, I will deny it. I have to care for my dad and I will not be the target of his rage because of something I said at his Dr’s appt. I have been down that road before and it just isn’t worth it. I’m not doing that again.

So speak to the doctor before hand about what is really going on and then decide for yourself what you can say in the room with your mother in law there. Let him in on the game so he understands what’s going on.

The only way to accurately diagnose dementia is with a battery of neuro psych testing - not interview answers. If this isn’t done results are questionable.

Make sure that all of your mother's paperwork is in order while she is still capable of signing legal papers: powers of attorney for medical and financial matters, a living will with her medical directives and a will, if she has assets. You may need an attorney who knows elder law to assist with this. Her POA(s) also need to be on file with Social Security and Medicare to be able to speak on her behalf. You can do this by phone with her sitting next to you to respond and agree to questions they will ask. It sounds like she needs to have 24/7 care if not immediately, then soon. Make sure you have a plan for a time when her care may be too much for you to handle by yourself. If you are her POA for medical matters, it may be best to discuss certain things privately with her doctor, so as not to embarrass your mother. All the best to you and your family.

I started my Mom's doctor appointment with a letter for the doctor to read and keep in her records before he talked to my Mom. The letter detailed all the major issues. I numbered them. And I kept a copy for myself so we could go over it if he needed.
I handed it to the nurse when we checked in and the doctor was reading it when he came into the exam room.
Made it much easier.

What’s to prepare. I used to get mad at my wife for things. Then one day at the doctor they test her and tell us she has dementia. My whole attitude changed. It probably affected me more than her but explained so much. I often wonder just how much she really understands.

My sister in law has a mother battling Alzheimer’s and she has gotten mean and belligerent. When the mother goes to the neuro doctor (or any doctor), SIL writes out her concerns ahead of time and slips them under the other papers she has filled out, and then tells the nurse to look under the intake papers. You could also hand the papers to the receptionist with a note on it to please show to the doctor ahead of the visit. For my own mother in law, I called the office ahead of the appointment, talked to the nurse about my concerns and asked her to let the doctor know before the appt.

As others have said put in writing what you'd like to communicate to the doctor. Put a little Post-It note on it saying, "Please have doctor read this", and hand it in to the front desk staff.

Be concise. Head the first part with the word Observations (or something like that). Use bullets to describe your MIL's symptoms, behaviors and capabilities.

Below that head the next section with My Concerns. And use bullets again.

And if you like a last section with bulleted questions.

I read your profile before responding. It gave me a little chuckle to read your statement… "My in-laws are deeply religious people that lean to the far right, making them suspicious of the medical system which can complicate eager participation in appointments, medications, or treatments."
Live and learn.

I used to worry about the same thing, but as journey continues, my Mom is less able to follow the candid discussion between Dr/team and myself. Yes, definitely write down your concerns and present them to screener for Dr to see before she engages with your MIL. Very helpful for all.

We also have them run an MMSE at each appt to see “where we’re at” since last time. With my MIL once we lost ability to differentiate day from night, we could no longer keep her safe at home and still adequately care for my Mom, whose needs were primarily during daylight hours. My MIL does not present with any atypical delusions/paranoia but my Mom does and gets increasingly aggressive/ paranoid as her sundowning sets in. You definitely want to discuss those behaviors with your MIL’s Dr…to get suggestions on both management for her and coping mechanisms for you.
Medication isn’t always the answer, as side effects may become larger than the initial problem. Wishing you answers and peace.

Take videos and show them to the doctor..........doubt that you'll need to say anything.

Use a very gentle and caring tone. Tell her that you love her and are concerned about her health. Tell her that she has been off at times and you want to find out what’s wrong so that maybe the doctor can prescribe something to help her. Give her examples. Maybe your husband can partake in the conversation with you and his Mom. It may not go as planned. She may get very angry, depending on her mental state. Pick a time of day when she will be more receptive. Combine her doctors visit with lunch out. Your husband should go too. At least initially for support. Have her keep a calendar of daily events so that she can always see it. Don’t be surprised if she Showtimes for the doctor and acts as if she is fine. All the best.

My understanding of the situation is that given her own confusion and fear I suggest you prepare a note for the doctor and give it to the receptionist at the dr’s office so he can get some idea of her mental condition before he meets her. This will avoid the confusion of her having to hear your description, but the dr in his experience will be able to do his own interview and come to his own conclusion and the test will give you both more information about her condition. When meeting with the do tor we tried to prepare the main points ahead of time knowing time to be limited and wanting to spare the patient’s vulnerability. Remember that losing control of circumstances is very damaging to her identity and self image. Good luck

Make a copy oF this excellent post and take it with you to the appointment . Arrive at the appointment in a little bit early and ask the receptionist or nurse when you check in to make sure the doctor reads this because you don’t want to discuss it in front of your mother. I did this with my husband at one of his appointments and it worked out beautifully. It’s very hard to deal with these things and if you give the doctor a heads up before he or she actually sees your mother, the doctor will know what’s going on and will save you the anxiety of trying to discuss with your mother there. The doctor will then know how to proceed in the presence of you and your mom. Good luck

I gave a file folder to the receptionist at check in. I wrote, “Please help us!” on the cover. I included a summary of behaviors and recent incidents inside. The doctor was better prepared on how to approach the visit with my dad.

I suggest starting with asking her what questions, concerns she has about the doctor' s appointment; ask her what she wants to be sure to ask/ talk about. Let her see you write down her responses; do not concern yourself with if she is getting it all correct; what is important here is helping to further establish trust and, support for her self respect and, some control: as she has surely lost a lot of her independence which can and does create grief and anxiety which can lead to anger and other challenging behaviors.

After you have listened to her concerns and questions you could then tell her that you are adding a few other concerns to the list so that you both are sure to remember to ask the doctor. You can tell her what these are as you list them or just simply add them to the list and tell her if she asks; whichever you feel best at the time. Either way you have both together collaborated on the concerns and, going into the appointment, even if she forgets some of what you have talked about,you can honestly remind her of the conversation. Helping her to retain some dignity and self esteem will go a long way. Also remind her that all of the questions and conversation is to help keep her safe.
Practice good self care for yourself and, do not let her nor anyone make you you feel guilty. Remember to enlist family and other help also.
Best regards....

I didn't prepare my husband other than to say, his doctor wanted him to see a neurologist. I wrote out 2 very concise pages, similar to what you did here, and handed them to the receptionist as I checked him in. I said something like: Here's the paperwork for the doctor to see before we meet with him.

My husband never even noticed and the doctor definitely read it before he saw us. He was able to ask a few pointed questions, I could tell from my letter, and do his exam. He wrote, and handed to me, a prescription for tests and the #1 diagnosis was LIKELY DEMENTIA.

Bogeydune: You should speak to/advise your MIL's physician of these issues, especially the wandering and the medication self management. How else will the physician know that your MIL is NOT taking the medication as directed? Notify this specialist immediately about the wandering. Do not wait.

If your name is on the HIPPA form, you can call the office & leave a message with the nurse about your observations & behavior changes ahead of the appointment. Even if your name isn't on the form, you can still notify the nurse, they just can't speak with you or answer your questions. You could also speak with the doctor before your mom is called into the room or just be honest with the doctor when in the exam room. Tell mom while in the car that the doctor will be asking her a lot of questions to make sure her meds are doing their job.

I know exactly what you mean about not wanting to discuss your moms symptoms right in front of her. We recently had a phone interview with CICOA and I felt like it was degrading telling them that mom didn't understand how to wipe or what to do with the soiled toilet paper or that she is in a small room with a bathroom in the memory care facility and still can't find the bathroom. It's degrading and humiliating for me to say these things in front of mom yet CICOA insisted that she be there when we speak. It is bordering on cruel. Since you are not dealing directly with a government agency, you should be able to have a phone call with your moms doctor or their nurse. Or if unsuccessful with that, you could write a letter with your concerns and hand it to the doctor when they enter the room for her exam.

When I was caring for my Daddy, he has since passed, I did not discuss his ALZ in front of him. He knew that something was wrong and I poo pood it off to being old and thats how we get sometimes we just forget things. He accepted it. I had a friend that DID discuss her mothers dementia in front of her and immediately she went into depression. You could see it in her eyes, she stopped crafting, she stopped walking in her neighborhood, she stopped visiting, she stopped grooming herself, she would sit in her chair and pet her cat all day long. She did come to church and came to the church functions but would not participate in the activities at the functions. My advise from these two experiences... Lie... it won't hurt her and anything to keep her going. The thing you do not want to happen is for her to go into depression. I told my family and friends -- DO NOT TELL HIM HE HAS ALZ! That was the warning when entering my home! Yes I lied deal with it!

You don’t need to prepare MIL for appointment.
They have procedures and/or testing, starting with simple or 4-6 hours test comprised of language, problem solving etc. Then MRI, as it takes several appointments or evaluations from different specialists, good neurologist can give you his/ her opinion.

She will be asked to draw a clock. Have her practice this with clock hands at various times.

She will be asked the day of the week and the year.

She will be asked to name the president and vice president.

No prep needed. They need to ask her everyday questions that she should be able to answer on the fly. That is how they measure the decline. You just need to tell your mom that she has a doctors appointment and the doctor may ask her some questions. Tell her to answer the best that she can and there is no right or wrong answer.....and leave it at that.

If you make a big deal out of it, she will be stressed. If you have specifics that you want the doctor to know, call in advance, write a letter and take it with you or ask to speak to the doctor privately for a few minutes before the appointment.