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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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.
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.
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.