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.
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.
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.
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!
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.
The bottom line is that you can't force people to do things they don't want to do.
"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.
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.
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!