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I took over as the health care proxy advocate for my 87 yr old mom; (older sister was burning out); at first she was cooperative and we followed up together on many various dr appts but has put off the neurological screening since March when she was hospitalized due to fall, hallucinations,etc....she's afraid we'll take her drivers license away. That wasn’t the case; more wanting to get a baseline as we are sure she has early onset dementia...Help! Too much is happening right before our eyes and she is resistant and inconsolable.

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Hi, welcome to the forum.

Does your mom live alone, and can you talk to her primary care doctor?

Why was your older sister burning out? If you can give some more info you will get better advice.

I've been where you are in terms of knowing my mom needed a neuro-psych eval, and knowing she shouldn't drive. My mom too is very stubborn and unwilling to cooperate. I'm in my 3rd year of having her live about 200 feet from my place. In our case, I had to deal with my mom's doctor to get the neuro-psych eval ordered, and it took a crisis to get her off the road. Hopefully that won't be the case with your mom.

Every situation is different, so the more info you can provide the better!
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My3Sisters Dec 2020
My sister has been dealing with her negativity the hardest as mom projects the worst on her overall and all related emotions since dad passed away eight years ago...they also live across the driveway....I have shared responsibility fir mom but with my working full time, she naturally has done more, but is now setting boundaries with mom...all good...mom feels we are hovering and just wants to do what she wants , even with Covid, which sets my dear sis over the edge....it s a tough balance between keeping her safe (“which she doesn’t care”) and impacting our families as we go in to do her food shopping, feed her as she doesn’t want to cook and is miserable with her loneliness despite our attempts to keep her company and make plans with her....
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Your mom may have early stage dementia. Early onset is under the age of 65.

Many never have a neuropsych exam, it really is a grueling test, lasting several hours. Diagnosis is based n behaviors. Does she see a geriatric specialist doctor? They are well versed in elder health. My mom never saw a neuropsych. We all knew she had Alzheimer's.

The stages and behaviors change as the disease progresses. As those changes happen a gerontologist will address the sometimes very disturbing symptoms by changing meds or altering does.

I am of the group that does not see the need for a neuro exam. It won't change her behavior which is what medication scripts are based on. Let it go, it is not worth getting frustrated and arguments and agitation that result.

If this is all because of her driving, contact the DMV and ask them to call her in for a driving test.

Find caregiver support meetings. Many are now offered online. Even AARP has meetings. So many opportunities for support out there. Covid has made many things much easier. Read, attend support meeting and learn all you can about this dreaded disease.

Remember that mom is very frightened, mine was. How can you provide her comfort? Learn to go with the flow.
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Suetillman Dec 2020
She is 87
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If her driving seems even remotely concerning you can anonymously report her to your state's DMV, giving them the details of who you are, why you're concerned, her name and license #. They will send a letter calling her in for a test (vision and/or driving). I did this for 3 elders in my family. In the meantime, consider removing her car and tell her it's in the shop. Also discretely ramp up driving her places and asking other family, friends, neighbors, church people to take her places. I did this for my elder and she enjoyed the company more than the driving. I would privately give the driving helpers gc's to restaurants so that they'd take my LO out to lunch or dinner as well. She barely blinked an eye when she was called in and didn't even pass the eye test. My own mom is 91 and is showing signs of cognitive decline but I wouldn't bother taking her in for testing. As other commenters have suggested, it won't really change anything that is done for her medically. Even if her problems were from a brain tumor, would you have her endure the rigors and risks of surgery and chemo? Maybe find help for her anxiety and that will help everyone.

When you say you took over as her health care proxy, I'm assuming this means you were already legally one of her medical PoAs? If not, you will need to have your mom put this in place BEFORE she gets any sort of cognitive test. I wish you and your sister peace in your hearts as you walk this journey with your mom.
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I needed several Drs letters in order for me to take over the family Trust and have access to her accounts and pay her bills. I told her we had to go to the doctor for her yearly exam or Medicare would stop paying her medical. I sent the neurologist a list of the things she had been doing so he could review before we got there. Paranoia, hallucinations. Not bathing, refusing to remove soiled depends etc. He did a mini eval and it was clear she had dementia. One of the many white lies told to keep her safe. We had already removed her car and when she asked for it we told her the shop was still working on it.
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For your purposes, and at her age, she may be better served by a test of her functioning that can be done by. Psychiatrist or psychologist or social worker who have specific training in assessment of geriatric clients.

Your questions and concerns are mostly focused on her ability to manage her own affairs, her emotional reactions, her ability to function with others, and above all, with her safety.

Unless she has SPECIFIC physical symptoms that would lead you or her other physicians to think she has a TREATABLE neurological ailment (brain tumor, aneurysm, narrowing to blood vessels in the brain), behavioral assessment can be done more quickly and without physically invasive techniques.

Ask her physicians if they consider this approach practical, for the reasons you’ve stated here. If you get the go ahead, ask for THEIR recommendations for psychiatric/psychological/social work practices SPECIALIZING IN GERIATRIC CLIENTELE.

You may be lucky enough to FIND a specialist who will assess her in her home environment. IF so, as the examiner if you may introduce her as a college friend of yours, someone you met in Church, etc. to help establish a comfort level, and do NOT indicate that the examiner has come to assess your mother.

Someone skilled in the field will take it from there.

Hope this information can be helpful to you.
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My3Sisters Dec 2020
Will they really lie about their intentions for being there? From an ethical professional point of view, I find that difficult to believe they would but certainly will check that option out...we have tried suggesting switching to a dr with geriatric specialty and truly was hoping hers would retire, as he keeps saying he is, because she won’t listen to him re: this evaluation fir over a year now
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If you are talking about a neuropsyc eval I would present it exactly as you presented it here without the likely dementia suspicion. It is so helpful for the future to have a baseline now while she doesn’t have any cognitive issues in case she should suffer a stroke or other medical event because it helps the professionals treat things in the future. I wouldn’t focus on what might be happening now but rather what isn’t and how that can help prevent unnecessary treatment and point to proper treatment in the future if ever needed.

I wish we had done a baseline for my mother previous to her stroke, her motor skills came back easily and quickly but she was left with aphasia and not having a baseline made the two neuropsychology evals she has had since the stroke much harder because her communication is difficult so they can’t be sure wether it’s the aphasia/communication or dementia cognitive issues when evaluating her. The stroke of course is easier for her to blame her cognitive issues on but it would have helped in making rehab more successful had they been able to pinpoint the things that were obvious aphasia.

The other thing to point out is that this evaluation (not test) is done by an expert in administering these tests not a medical doctor, at least in our case so it’s once removed if you will from any doctors and again, at least in our case, it was not the test for deciding if she could drive or not. Now she was already not released to drive again since her hospital stay so a different situation from yours but there was a specific test for driving available to her to prove she was capable that had nothing to do with the neuropsyc eval. You might even see if her primary provider will order the evaluation rather than a neurologist if that would make your mom feel less threatened by it.

Either way your instinct to get this now is a good one, I wish we had known and I urge you to follow your instinct on this. Good luck!
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My3Sisters Dec 2020
Oh believe me we did! Still no way....sees it as “the end” ...doesn’t comprehend we are trying to help her maintain as much dignity and independence as possible....I Even said I planned in getting a baseline and every one should at 65 as per my own doctors! Despite her trust and respect for her own, she won’t...and yes we recognize it as fear ....she doesn’t see the love behind our actions at all
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Tell her you'll take away her driver's license with or without the test, and she's lucky she has someone to help her.
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I tried to get my mom tested, I believe she thought getting evaluated my be cause to lose her independence and won't accept an appointment, she won't make doctors appointments and we can't force her to go. She still understands and has good comprehension but her memory is questionable. For those reasons we cannot force her to do anything. Eventually something will happen and trigger an event where she will require hospitalization and I hope she's OK, and then an assessment will likely deem her incompetent and we'll have to take over and get her to a care home or assisted living.

The bottom line is that you can't force people to do things they don't want to do.
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My3Sisters Dec 2020
Well aware....our intent is to continue to help her keep her independence and stay in her home that my father built for her years ago but her wellness and safety are our priority but sadly enough not hers
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DRAG HER.














I'm kidding. I'm only 15. I have no idea.
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gdaughter Dec 2020
Sweetie, your sense of humor will serve you well in life, especially if god forbid you have to care for a family member with dementia. You remember this, to take care of yourself. And remember too, how we all want to be loved and cared for and have our rights as a person respected no matter what. We also all grow up cherishing our independence and not wanting the help of others.
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Otherwise known as "Golden child becomes tarnished" LOL?
Contact your local Alzheimer's Assn or find one of their support groups to attend...most of the people attending can speak freely about good care they have received in the community and will lead you to the best practitioners who will have experience with all the issues. The neurologist we met with was super, we were all in the room and the way he "screened" mom, it felt like we were all just visiting...dad was so clueless and naive (mom was the patient) he was impressed with all the time the MD spent with us:-) They may have you fill out some forms with questions about her behavior prior, and that can assist in giving them a baseline as well. Also in some states there may be ways to have a license taken away where you would not be the heavy, it would be some 3rd party. I would try hard to not let it be the MD whom you want Mom to have a good relationship with. How much is she actually driving? And what alternatives can you offer her in her area that will still let her get out and about...if she is even safe doing so....
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btw, some nursing homes may offer a simulator so one's driving skills can be evaluated by someone who is NOT capable of taking a license away...maybe if mom is shown how she could hurt someone if her skills and reaction time is off she will convinced to give it up on her own?
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My3Sisters Dec 2020
Wow didn’t know that ...thank you...but she s not in one so wouldn’t she have to be a patient/ also she never would agree to it unfortunately
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I would explain to her that maybe there is something that she can take to help with her issues but she needs the exam first.  Also. I would stress (IF her license is taken away) that she might be better off not driving due to all the other people out there that are wreckless.  That is what I did with my dad.  he hadn't driven anyhow for a couple months, but when he got a paper from Penndot indicating he needed to have eye exam, doctor exam and signed before he could renew his license, he said he would just get the doctor to sign the form (which we knew would not happen). I told him that there were too many people out there that were bad at driving and didn't want him to be in an accident due to someone else.  He also was getting dementia.  he was happy with that answer and we only got him an  ID and got rid of the license.  And if she is having hallucinations, she probably should not be driving anyhow.  Dementia will have the person go thru many difficult stages, some very angry and combative, etc., so get in touch with office of aging, an elder attorney for any future decisions that have to be made.  I wish you luck and hopefully others will have some better answers.
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My3Sisters Dec 2020
I hear yay but mom is often depressed , angry ( wants her life over no matter how it ends), combative....not going out easy...”her life will end if we take license away” her words not ours...we weren’t trying to do that, she actually a pretty good driver given her age....more we were hoping for meds to stave off the dementia symptoms as well as the senior depression...amazingly she takes meds for every lthing else but has resigned herself to her own misery
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Imho, go in with the premise that she can be helped. Prayers sent.
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Not sure if this hallucination thing came on quickly or slowly, but do have her checked out for urinary infections. She could have chronic infection issue that does not/did not clear with a single round of antibiotic. Very common to totally change behavior, seeing things, mental issues similar to dementia.

So, does she live alone and still driving? You might tell her that the neuro testing could rule out a seizure, fainting or other issue that may have attributed to the fall and needs to be checked out. What if it happened while driving?

If she lives alone, it might be time to start talking to her about caregivers coming in on regular basis - maybe a couple hrs a day, several times a week, etc to help her out, get to put eyes on her, just in case there is a problem. Remind her of last fall - then build on that. What if it happened and no one found you for several hours, several days, etc.
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With dementia, the sufferers tend to do better with a consistent routine and environment. This appointment seems threatening to her since it is not part of her normal life and she may see it as a "death sentence," Explain that her examination is part of a normal evaluation for her age - it should be for all seniors over 80! Explain that the exam is to determine her "normal" in case she has problems in the future and is necessary.

Meanwhile, consider setting up her home life to be consistent and safe. If she can not manage maintaining her health or her safety, then it is time for her to have "helpers" with her. Helpers can be family members, friends, members of faith group, sitters, housecleaners, paid home health aides... The goal is to maintain her health and safety in an environment that she can afford. Many seniors can be managed at home - hers or a family member's - for many years.
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My3Sisters Dec 2020
Certainly please know that is how we framed our conversation several times, with both her primary and pain meds dr supporting this..( whom she highly respects and trusts) ..she just continues to refuse because her best 92 yr old friend ( the sister she never had”) told her her other friends situation and now drivers license away and in a nursing home so that sealed the door shut with any cooperation we could have hoped for.
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This is not the stance I would like to take, but I had it in my back pocket if my mom hadn't agreed to a neuropsych evaluation at just the age your mom is.

"Mom, brothers and I want the best for you. You and Daddy brought us up to be honest and transparent, and to do what's right. The purpose of this evaluation is to see where you are so that we can plan for the future. We arent experts; the docs are.

Now, if you trust Gertie's version of what happened over what your loving family is telling you, then I'm not feeling like I can do all this legwork on your behalf.

Maybe you should hire a professional care manager to step in and take over, since you don't trust us to do the best for you.

Let me know if you are ready to proceed with the neuro appointment, or if you'd rather hire a manager. I can get some names for you, but then I will be stepping away from your care."

My mother had a bunch of rather irrational fears about the evaluation, including that she thought she was going to be labelled "crazy". It probably helped that I was, at the time, a practicing school psychologist and was able to explain the testing in terms of "the test sees you as a helium balloon; it wants to see where your "ceiling" is, and the only way to do that is for you to miss the answers to SOME questions. This is not about passing".

This fearfulness is as much a symptom of the disease as anything else you are seeing. If she won't cooperate, you sort of have your answer. Good luck.
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Hi BarbBrooklyn,
I write from the patients point of view. I was diagnosed with Early Onset ALZ 4.5 yrs ago. One comment I wish to share is nobody even suggested to me when I went for my Neuropsych Exam, that I should bring my DW or one of our adult children. I was the one that thought I had a problem and went out looking for help, my doctors ignored things until I was fired from my last job ending my 38 yr career. The firing occurred almost 5 yrs to the day, that I first started complaining of memory issues. When I received the results, again I went by myself. The neuropsych Dr told me I scored in the lowest 1% of patients on the test. He told me I should never work again, he said he was uncomfortable with me driving. When he sent the Neuropsych written results, he said, he had told me to surrender my drivers license immediately. Of course nobody was with me to support what I thought happened. I had given him a copy of a Neuropsych exam from my childhood, which diagnosed me with learning issues and said, I'd never hold a job, drive a car, manage a bank account or live on my own.
I previously owned a house of my own, when my DW and I married we bought a house together of our own 21 yrs ago. My Neuro Dr asked me when I was discussing the report with her and she said, did you give him a copy of the report from the early 1960's? I said yes, she said, obviously this Psychologist didn't bother to read it. Mostly it dovetailed with the current report. My Neuro Dr of 15 yrs at the time was very comfortable with me driving and we agreed after I brought up the question we'd discuss this at each appointment. She was not surprised when I called her back in March saying I'd given up driving.
Please make sure your LO is accompanied to these appointments for their protection. There are some unscrupulous Doctors that just push the paperwork and don't follow up on previously received diagnosis. Yes, I had a 38yr career that I loved, I drove a car of for 44yrs having received one ticket 30 yrs ago and a couple of accidents in the 1970's and one in the late 80's. I hadn't had but one in the last 30 yrs, and that was when I was rear ended by an unlicensed uninsured driver hit me and drove off. Ever since the unpleasant appointment with the neuropsych exam my DW has accompanied me to all appts, except one or two where one of our adult children was a sub for my DW. Good luck to all.
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CharlieSue Dec 2020
So good of you jfbctc to use your own experiences to try and help this poster. God bless you!
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I took care of my father for 8 years before he passed away. During that time we faced every one of these issues. Here is what I suggest: Someone is obviously taking your mother to SOME appointments. Once dementia kicks in, you don't tell them 'what' the appointment is for other than reassuring them that it won't take too long, you can go to lunch or pick up her favorite lunch or treat afterward, and you make sure she is back in her familiar surroundings as soon as possible. The neuropsychology evaluation isn't a big deal for the patient. If the neurologist is any good, he or she will be friendly enough that the patient doesn't even realize that their answers are being 'gauged' or recorded. After the first one, which includes asking a few questions, having the patient copy a picture from one place to another, walking a few steps, asking the patient where they are, what day is it, what the date is, and who is the President. I know this because I also worked for a neurologist for 3 years and this was a great percentage of the senior care. But, to sum it up, schedule the appointment. Remember that although this IS your parent, she or he is a patient. Treat them with love and kindness but remember that they don't WANT to make the decisions now...they just want to know that you aren't going to leave them somewhere or forget them. Make the appt sound appealing and 'no big deal'. I hope this helps!
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Testing - does this really have to be a neuro-psych eval? If you want a baseline, most PCPs give that test now. We had to change docs after mom was already in MC for 2 years, but they attempted it anyway! Combination of her hearing aid going through the laundry and dementia, she couldn't do much of it. We already knew she had dementia. At my physical a few months later, they gave me the same test. It's pretty minimal, but it's only for them to have a baseline. When we tried bringing in aides so she could stay in her condo longer, they sent a nurse first, who gave mom a more extensive test (not grueling, just more than the doc office had.) She did this in mom's kitchen, with 2 of us present, so it wasn't stressful, mom was fairly calm and it went "well." Medicare covers the cost of this test too. The nurse had recommendations based on the results of the test, which were helpful. One was to get a timed/locked pill dispenser (mom was living alone at the time.) She also told us that if mom agreed to personal care, such as help bathing, Medicare would cover some of the cost (NOT Medicaid, MediCARE.) Of course mom didn't really need that help and refused. The aides were mainly a sanity/med check, 1 hr/day only to start - didn't last, she refused to let them in. BUT, the test CAN be done in the home if you find the right place. Even if you aren't hiring aides, you might have luck starting with one of those agencies.

Driving/license/DMV - Some suggest reporting to DMV, some say have the doc report to DMV, etc. Most docs I've dealt with DON'T want to do this. Also, every state has different rules, so there's no guarantee reporting her would help. Mom's state listed self-reporting if someone has dementia - sure, that'll work! NOT. PD doesn't get involved until after the fact, which could be too late! Mom had already stopped driving at night (Mac Deg) and her "circle of comfort" slowly shrank to just the grocery store down the road. What led to taking her car away was first the back of the driver's mirror missing and the inspection sticker being about 6+ months out of date. Then there were the white stripes across both front fenders - rubbing off the garage door trim. The final straw for me was a call to report a flat tire. When I got there, the tire was split from the rim to the ground, the rim was ruined, the metal around the wheelwell was half off and bent, and even the rear tire had some damage. That was it. Especially when she says she didn't hit anything! The tire damage *could* have been from driving with too little air, but not the trim damage. The mirror back missing she says was there the last time she drove it. Sure mom, you don't even check the inspection sticker, but you check the mirror back? Riiiiiight. When I went to sell it using the POA, I discovered she never re-registered it in her name after dad passed years before! I had to send his death certificate to the insurance company to get his name off that, and use the POA and DC to sell it. The buyer was well known to my mechanic, so the paperwork because dad couldn't sign the title. I never took her license away, just let it expire. She had no car to drive.

If you can get the PCP to do their eval, or perhaps a nurse like the one who tested our mother, it might be enough to convince her to give it up, if she likes and trusts them. At the least, you would have your "baseline." A neuro-psych eval might be more daunting and threatening to her. As it progresses, maybe neuro-psych or other, if she needs special medication for symptoms, but we NEVER took our mother for any other testing. If you don't want to upset her by going for a driving test at the DMV or taking the license, but you feel her driving is sketchy, suggest it needs a yearly checkup (they DO) and put it away somewhere. Keep brushing off pickup with work being done, parts on order, etc. If she's in the earliest stages, she might not buy it, but try!

You know your mother better than any doc or test. Go w/ gut.
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