Nervous about my mom's upcoming neurology appointment, I know she's going to try and bluff the new doctor. What to do?

I hope things went well for you.

I learned that sharp neurologists know when clients are trying to cover their memory issues. They described it as having pat answers to typical questions so it makes them seem to others as being 'ok'. When it gets worse though, they get around the client by giving it a few minutes then to go back around to the same questions and simply ask, "what was that Q about the xyz?" and they are stumped.

Anyway, what I think is funny (irony of life) in my 20/20 hindsight is - the husband I cared for always seemed the 'ok' one to everyone because of that tactic, and his wife was called the one w/dementia, when in reality, his downhill slide started years before hers and SHE was an ornery gal that just wouldn't cooperate so they thought her's was worse! God love them. They both had dementia but expressed it differently & God made it work for them. There are some mercies in life.

oh yes , yes , yes. They will be master manipulators !! If you are dealing with someone not trained with dementia they fall for it or go with the “ I’m fine , we’re ok “ answers because maybe they don’t want to address it . Fortunately I did not initially have a problem getting my mother to a neuro visit . Later she didn’t need to go of course . I would call before appts and update them on how she was doing . My mom and I still don’t talk much about her memory issues . In fact , somehow I just moved her to an AL and she doesnt think she s old like the others , doesn’t need to be there ect and then can’t remember if she just ate , who she just talked to or where her husband is . Sorry you are in this process and it just doesn’t get easier , they get worse , it’s always something . You’ll be the bad guy . You’ll have to accept you’re the bad guy and do what will keep your mom safe , physically and financially. There are some great books out there that have helped me deal with issues and support groups !

My mother was experiencing forgetfulness, confusion, anxiety, denial, etc., all of the usual symptoms, and kept my father puzzled and frustrated. When my father would correct or question my mother she would deny any and everything.

I started keeping a list of usual things that my mom was doing plus my father would call me and tell me things when she was in the shower. If he said anything in front of her, she would deny and get really mad. I told dad I was going to make a doctor's appointment with her doctor and I would be going in with her whether she liked it or not and my dad said good. I made an appointment with her doctor and explained to them why I needed bring her in and needed to let her doctor know ahead of the appointment of my reasons and I was told to write the letter and either mail or drop it off and they would make sure her doctor received the letter before her appointment. I told dad if she says I don't need to see the doctor, tell her that they called that it was time for her check up.

I wrote my letter explaining why I was bringing her in and our family concerns and we really needed to know what was happening with her. I enclosed a list of things that mom was/is doing, but I do not want mom to know that I alerted the doctor ahead of time. Once at doctor's office when my mom's name was called I got up to go in with her and she shot me a nasty look and said you don't need to go, but I said I am going just to make sure that I understand what the doctor is saying so I am going in with you. She didn't say another word. I rather her be mad at me, but I would know we were on right track in finding out what was wrong with her. Her doctor was great. When her doctor asked how is your memory and my mom said my memory is fine. I spoke up and said "mom as you know as we age even me we get forgetful about some things and we want to make sure that you as you age that you are on the right track and don't have issues like your sister (she too had Alzheimer's). Her doctor jumped right in and agreed that it wouldn't hurt to be more thorough and see a specialist just in case if at some point mom started having issues we could head them off. Doctor suggested a specialist who would do a more extensive check up than she could do. I told mom that sounds like a good idea and if it was me I would do it and I almost fell over when my mom agreed. I was expecting an argument, but I was determined that she was going to see the specialist whether she liked it or not. Her doctor contacted a neurologist and forwarded all information over to her. After neurologist appointment, testing's and MRI completed, it was determined that mom had Alzheimer's.

I had to do all of this behind my mother's back so we at least have a diagnosis and she can't get away lying to the doctor anymore. The diagnosis was blessing because they put her on medications that delayed some of the really bad symptoms of Alzheimer's short term, but at least we knew what we were dealing with. My father who was so frustrated not knowing what was going now had a better understanding even though he really didn't understand what Alzheimer's was, but he knew that mom was "sick". My brother and I now knew how to handle things better when mom did or said strange things. For us, it was better knowing what was wrong with her than not knowing.

For us doing this as you say "on the sly" was the best for mom and for her family, who now understood what was happening to her and know what the future holds. My mother was diagnosed 7 years ago and she is now in later stages of Alzheimer's.

ExhaustedPiper;

Prepping my reply, I found your link to the appointment post, and posts from you and others, so I've revised it and this one will mainly focus on getting the POAs.

The various suggestions made by many others about getting POA ASAP do still apply! It is good that you got the health proxy - but will it work for other docs, hospitals, etc, or do you need to repeat for each? Also doesn't cover financials.

With current test results and how some EC attorneys work, IF you can convince mom to set up financial/medical POA, she might squeak through. If the attorney deems her capable to sign, do it ASAP! We did this with mom when she was in the early stages - he decided she was aware enough and we proceeded to update everything. Generally a first consult (you could do this without mom there) is free, maybe 1 hour, so have all questions prepped beforehand and take notes! Also, if she has a "better" time of day, such as before noon, set up the appointment for her during that time.

Approach it carefully with mom, explaining if she needs hospital stay or surgery for anything, you would need it in order to pay her bills and ensure she gets her SS and other checks/income. Stress this allows you to advocate for her medically/financially when she's unable to, NOT that you are taking control away! Focus on how this is only for an emergency (meanwhile, you can start the takeover process anyway.)

If she is has enough assets, those should pay for the attorney fees, not you. If she has many assets, consider setting up a trust as well.

One last note - if she gets SS, you can sign up for rep payee. This can be done without any POA (SS does not honor any POA.) Work with local office, not the 800 number. They do it in person, so make an appointment and apply. It really isn't difficult and it will protect her assets from any scams and her propensity to spending on frivolous purchases (pontoon boat!!! hahahaha!) She will get notice and it might upset her, so if you can snag mail before she sees it, might be best. If they approve (I had NOTHING from doctors to provide, so it was not based on any diagnosis!) you have to set up a special rep payee account. It will stop any regular payment, only you have access to this account, first payment comes as a check, then you can call and set up electronic deposit. They do require a yearly accounting for how the funds are spent (and rules about how it can be spent), but if you keep good records, you'll be fine. It can be reported online.

ExhaustedPiper;

**Per your after-appointment post, this section is mostly moot for you, but it may help others. It's good that you found a smart and compassionate doc for mom!

For appointment(s) to test for cognitive issues - sure, let the patient go in alone if they want to. You can provide information to the doctor beforehand, and hopefully you can discuss with the doc after. Doesn't matter how much the person tries to fudge, any *competent* doctors have likely seen it all! Many people can fool others who do not see them on a regular basis or didn't know them before, especially in the very early stages, but generally they can't fool the specialists who've seen it before. With heads up from you and discussion after the exam, you should be fine. Just hope the person is at the early stage, so that you have time to get to EC attorney and set up POAs!

We did not have to go this route - mini exam was done in-home by a nurse associated with the aide company we were hiring (didn't work out as after a few months she refused to let them in!) Some POA documents require medical confirmation, so this might be needed for that. So far, just the POA was enough for us and thankfully we had it all set up long ago.

I noted some posted comments saying how the person could fool the doctor or other family members. This can be frustrating, and I can say my brothers were clueless as well. In the earlier stages, the person can learn how to cope and it might only appear to be some age related issues. For any family member who is in denial, have them come spend time with the person - not just an hour or so, stay for the day or better multiple days. Be there at different times of the day! The charade only works for a while and often not long. Installing cameras, if possible, can help document what you already know and might help convince those who don't see it.

YB didn't understand where mom was at and even kept insisting mom would prefer the AL vs the MC, saying she wouldn't want to be in with a bunch of old farts. Well. if he knew anything about AL, it has MANY old farts! Some people just need a little help for now and chose to move there, to prepare for future needs and/or just to make life easier for themselves. Others use walkers, wheelchairs, etc and need assistance in varying levels, but are still "with it" mentally. In general, this is where most older folks would go if they choose to (they may start at IL - our facility has all 3 levels.) He didn't understand that there is no way to prevent mom from walking out - his comment to that was that she doesn't wander. No, not from her own place...yet at that time. But in an unfamiliar place, as memory regresses, etc? Nope. Staff also said no.

But, getting a firm Dx if needed, and learning all one can about dementia is the best way to help the person and yourself. Understanding and being able to anticipate what might happen going forward is key. Learning how best to cope with whatever dementia happens to throw at you helps avoid frustration and anger issues, for both you and the patient. Knowing when you are in over your head is also important, so as to prevent care-giver meltdown and/or health issues for yourself. You will be of no help to the person or yourself if you don't prepare.

ExhaustedPiper;

"...I need to be able to talk honestly with her about this when she starts going off the rails"
Knowing and trying to tell her she has it will get denials/possible arguments. Bad idea. Honesty generally doesn't help, even if the doctor tells her. We NEVER used the dementia word with mom. The PCP doc said 'It isn't safe for you to be living alone...' - OH boy, bad idea!!! Knowing she has it is good for YOU, so you can read up on it to be armed with all the knowledge, tricks and tools of the "trade".

Dementia defends itself and you can't reason or argue with it. You can explain all you want, but it won't change anything. It will only frustrate you and/or make you and/or mom angry. She is not likely to accept Dx of dementia. Using dementia diagnosis in any way isn't the way to "manage" mom.

"I don't know how to start them when she insists on living this "charade of independence" (I recently saw that term on this site)."

Mom forgot what she said/did minutes after saying/doing, but she would say she is old and entitled to forget sometimes. Never said it to her, but 'Sure mom, I forget too, but repeating the same thing over and over in 10 minutes is not simple forgetfulness.' She also maintained she was 'Independent, can take care of herself and can cook', none of which was true, but you could not convince her otherwise. All you really can do is "authenticate" their reality and try to change focus to something else. Trying to correct her or make her see reality will only frustrate and anger her and you. Mom clammed up when I did this once, before I understood better how this damn dementia works!

"...wanting to buy a pontoon boat and get cosmetic surgery..."
DEFER!!! Learn how to push these ideas out until maybe they are forgotten - for instance: 'Oh that boat is very expensive, let's wait a bit for it to go on sale!' and then change the subject to something completely different. Cosmetic surgery? You can always pretend to make an appointment and tell her it is 6 months away, they are all booked up (you may have to enlist their help, if she still uses the phone!) They DO lose sense of time and forget they mentioned these things, so these deferments can often be repeated later!  

Changing focus to something else can work as well (I call it the 'Hey, look at that squirrel out there! There! You don't see him? Oh he's up in the tree now'). Often times this will change their focus to something else (doesn't have to be a squirrel) and at least temporarily they will forget the original statement/desire.  

Going forward, arm yourself with information and tools! I liken it to being prepared for a baby/toddler/child to progress to a stage that other's might not reach until later, such as rolling over. Often babies get hurt because the parents didn't anticipate it would happen yet. You cannot count on any dementia documentation to know WHEN any particular stage or behavior will happen, or even IF it will, but knowing that it CAN will help you recognize it when you see it! Learning how to refocus/redirect or "fudge" answers to questions or desires to do something will help immensely. Agreeing with any delusions she might have (mom has not as yet) and working to calm, reassure and soothe her work better than denying the delusion, which is all too real to the person.

Recommendations (your profile says she doesn't live with you):
Set up safety measures.
If she takes her own medication, use a locked pill dispenser.
Install cameras.
Keep learning as you go!
Take over finances, including rep payee for SS and change billing to your address.
Remove all paperwork and valuables for safekeeping.

Funny thing mom did - another resident's daughter wrote an article for the paper and had a picture of her w/ her mom. Mom reads it, sees the pic and tells the resident that she is here because she's nuts!!! Even funnier - mom never questioned why she herself was there.... Enough sense to make the statement, not enough to make the connection