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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???

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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Reply to golden23
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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!
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Reply to MargaretMcKen
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MACinCT Oct 9, 2022
I have done this with my mom. The doctor then told her the news
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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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Reply to igloo572
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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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Reply to Sunnydayze
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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.
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Reply to Countrymouse
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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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Reply to Caregiverstress
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ChirsM Oct 9, 2022
Am so impressed with your attitude: to giver father the help he needs above all.
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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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Bonanzatree Oct 9, 2022
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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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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Reply to Tumbleweed4242
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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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Reply to Katefalc
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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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Katefalc Oct 9, 2022
Oh my gosh!! Exactly what I just said!! Awesome that some of us are on the same page . 😃
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