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

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

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We have a neuro appointment on the 13th. It will be my first appointment with her, as we are all still ironing out the best plan for her. Since I work the closest w/ her and I dispense her meds, it was decided I attend her appointments as well. Anyway, she's battled parkinson's for many years, but the last few months, she has really started to show cognitive decline. She and I were reviewing a symptom tracking worksheet, and out of 4 or 5 possible cognitive issues, she identified "confusion" in herself. The doctor needs to know that it's much more than not knowing what day of the week it is. She hallucinates. She paces and wanders, and at times, kinda borderline obsessively collects stuff like folded paper towels or extra pairs of briefs. She'll take a sliver of information and ruminate on it, blowing it up into a full-blown anxiety attack (ex. We were given a lift chair. Unfortunately, the previous owner's cat urinated on the cord, so the cord needed to be cleaned. MIL overheard something about a cat urinating on the chair, and over the next 6 hours, her mind spun it up until she told me, with tears in her eyes, that HER beloved, 20 year old cat would now need to stay outside because she couldn't have Jazzy peeing on everything...???) She's gotten herself into some very bizarre, unsafe situations when she was left alone. These things previously were happening when expected; in the middle of the night, late evening, early morning, and they resolved quickly. However, they are happening at all hours of the day now, and lasting longer. I'm convinced that her sinemet dose is too low and not managing her symptoms, but even that....her mind has confused "dyskinesia" with "tremors". So, she feels a tremor, and she either splits her sinemet in half or skips it....hoping the neuro can have my back on that one...anyway, how should I prepare her for this appointment? I don't want her to be blindsided by the extent of her behavior, but the doctor needs to know the reality of the decline, right? What do I say to her???

Cognitive Decline Communication & Language Medical Care Parkinson's Disease

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**follow-up... I discussed medication schedule with MIL prior to her appointment, and she agreed that with the combination of her declining vision, the stress of alarms going off every 3 hours, and her well intended yet harsh drill sargent/ husband "reminding" her every 2 minutes to take her pills, it had become too stressful for her to keep track of them herself (she was MAYBE taking 1/2 her prescribed dose a day, and at random times). Also, her mental decline, it wasn't as bad as I thought it was, turns out she was drastically under-medicated and doing much better now, but still confusing times and dates, executive functions I think it's called, not conducive for accurate pill taking for sure! I am now on all her medical forms so I can speak with the doctors. Because of MIL's great distrust and general lack of medical knowledge, she prefers I talk to them, so that's a blessing, in many ways. I'm very lucky. My MIL is a wonderful, intelligent woman who does trust me and know that I have her and her husband's best interests in mind whenever possible, and I fight hard, lol!!! We are doing much better now that I'm bringing her her meds. Most of the cognitive issues resolved with the regular med schedule. Thank you all. Each answer provided insight. Thanks for taking the time to answer...

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I suggest telling mom you have a doc appt. That's it. She perseverates over things already. No need to whip her up into a frenzy and she just arrived at the appt.
Id give receptionist/nurse a bulleted item list of problems she is having. That way he's not reading a novel for 10 mins.
Ex: moms issues
1. Noticeable cognitive decline
2. Hallucinates
2. Extreme anxiety/anxiety attacks
3. Wanders/unsafe
4. Perseverates on subjects for hours.
5. Little sleep.

sinemet dose too low?
Worried about discussing escalating symptoms in front of her. Will cause extreme anxiety for hours.

All done in a nut shell . No lengthy talks. Doc gets the point.

I am confused as to why she is self dosing???? That won't help if she is deciding when and how much she will take. She is not getting the proper therapeutic dose to do anything. Doc could give you the world's best med, but it won't help if she is deciding how much she will take. She is past the point of deciding medication. She is not taking the med properly. It will never get up to therapeutic levels and work as it should, if she is deciding things. Her cognitive abilities are gone. She doesnt have the capabilities to dose herself anymore. I don't know why an adult is not making the decision on how to give medication properly? Someone needs to step up who can do it. Mismanagement of medication is contributing to her problems. You wouldn't let a 4yr old dose themselves. You would dole out the proper dose and make them take it.

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We have since changed med dosing, and I bring it to her at the prescribed times now, and it's AMAZING the difference, well, not really, I guess. She was probably only taking a half of her prescribed dose of Sinimet, so a couple of weeks later, much improved!!!!!!!

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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.

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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.

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Please please do NOT do this. Clock drawing / 3 word test aka the “mini-mental” needs to be accurate to what their capabilities actually are. Doing prep sessions skews accuracy.

Geriatric practices will have big old school clocks all over the place. It will be easy to visualize “clock”.
On the minimental, the words all will be words of daily activity or words that are basic. Table, chair, window, a color. My moms practice in all the rooms had a basket of with a single type of fake fruit, apples, oranges, fake slices of watermelon (which I found was quite funny).

Only way I would ever, like EVER - be or would suggest to others to be proactive in an elders testing - is IF your elder had as their first language something other than English &/or IF they are “code switchers” so can go between 2 languages in their usual activities. (My mom was both English/Spanish written and verbal). Tests are designed around folks who are American English speakers. Issue for those who can or have spoken another language is that their processing of language can revert to nonEnglish. So for Spanish speakers “table, chair, orange” can process as a recall memory as “la mesa, el sillion, la naranja” AND they have to do a secondary processing to translate to English to repeat to the doc or staffer or to write it on a form. It’s super stressing to elder as they know they need to respond - like for my mom it was “ay mija, everybody was waiting on me to say the words”. If that is your parent, you DEFINITELY should make their use of languages very very clear. There are bilingual tests for the Montreal and easy to do bilingual for the minimental.
Btw watermelon is sandia in Spanish & the moved from WY to TX not at all any fluency in other languages staffer got the fake watermelon slices as she was over butchering saying la naranja. The practice did routinely bilingual English/Spanish & English/German testing as that’s what’s reflective of their elderly population. Really if your parent at all bilingual, let them know.

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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.

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It wasn't THAT type of appointment, just a regular check-in, and she has a tendency to say that everything is just fine and go home, which was my concern. If the doc doesn't get any other info, they'll never even know to add additional tests. But, I think things are evened out now... 😏

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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!

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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.

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Yes, keeping dignity is so important, yet can be so difficult w these tricky subjects. I explained the bathroom issues as "problems remembering the order of tasks to complete toileting"...the doc was smelling what I was cooking...

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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.

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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.

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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.

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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....

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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.

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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

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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

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Oh my gosh!! Exactly what I just said!! Awesome that some of us are on the same page . 😃

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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.

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

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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.

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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.

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Gee, what do the "far left" believe in? Bringing politics into this forum could start a fire storm.

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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.

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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.

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So true. In the actual appointment, a few times I wondered if she had any understanding of what was what. She's, for the most part, there. But it's like the parkinsons is a terrorist inside of her mind that periodically hijacks it...such a cruel illness.

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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.

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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.

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First time I have heard of having POA on file with Social Security. I'm in California. What state are you in?

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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.

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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.

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Am so impressed with your attitude: to giver father the help he needs above all.

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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”

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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.

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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.

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I am so sorry you had to go through all of this. I am glad that MIL is where she should be. Please know that you did everything you could do. What a compassionate DIL you are.

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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

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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.

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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.

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

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