How do I prep my MIL for an upcoming neurological appointment discussing her mental decline?
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???
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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.
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.
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.
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.
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.
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.
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....
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.
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 the day of the week and the year.
She will be asked to name the president and vice president.
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.
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.