Getting a diagnosis for someone refusing to notify a doctor

Czechdeb

New here!

My mother doesn't have a diagnosis yet--she's been refusing to address her memory loss issues or tell her doctor what is going on. My stepfather has been helping her with routine tasks and even going with her to doctor's appointments (for unrelated issues), which has masked her loss of cognitive function. Earlier this week, she stopped recognizing him! She is also experiencing delusions where she believes there is a conspiracy to "imprison" her, and she is suspicious of my motives when I suggest she see a doctor, and worried that she'll be "committed", declared crazy, or stigmatized.

As she is still resisting medical help, we have convinced her that the only way she can get access to her keys (which my sister hid) is if she gets clearance from her doctor for being able "safe" to drive. She has made an appointment for early next week. However, we are so worried that once she goes in (and this time she's insisting on going without any of us), the doctor won't understand enough about what's going on to be able to recognize the issue, let alone follow up with the proper extensive testing for a diagnosis, or that she will realize what is happening and walk out and refuse treatment!

Right now the doctor's office won't talk to any of us about her medical condition because of confidentiality rules. Does anyone have any suggestions about how we might proceed? She is currently so miserable with anxiety and fear, and we wonder if at the very least a diagnosis might provide her with some sort of medication to treat that. Thank you for any advice you can provide!

Quilting brings calm

Do not send her to the doctor alone. Someone obviously has to drive her right now since she doesn’t have access to the keys. Just walk right in with her and follow her into the exam room. The fact that someone accompanies her isn’t by itself masking anything. The fact that your step-father is scaffolding het should be being recognized by the doctor. By that I mean- is he’s answering the doctor’s questions instead of her? If the doctor’s not picking up on that, then there is no way you want him/her ‘clearing’ her to drive without someone present to say ‘wait a minute - she didn’t recognize her spouse yesterday’.

Whomever takes her is most likely helping her fill out the forms the office always wants done. One of those is the HIPPA form. Write in the names, hand it to her to sign along with the consent to treat form.

The doctor can’t discuss her with you without a HIPPA form, but he/she can read a letter from you detailing her behavior. Write one and drop it off the day before. Or hand it to the medical assistant as you are taken to the exam room. Who is monitoring the electronic patient portal ( test results, etc)? I’ve communicated with my mom’s doctor that way and expressed concerns too).

towhee

This is a brief guideline about HIPAA, the law that governs a doctors communication about their patient.

https://www.hhs.gov/sites/default/files/provider_ffg.pdf#:~:text=Even%20though%20HIPAA%20requires%20health%20care%20providers%20to,involved%20in%20their%20care%20or%20payment%20for%20care.

You will notice that this is all about what the doctor can say. You on the other hand, can say anything you wish to the doctor. They just might not say anything back. In cases like this, usually family members write a letter to the doctor ahead of time. Before the visit, and at the time of the visit, they make sure that the doctor has received the letter, and have another copy in case they have not. Let the letter speak for you. Hopefully the doctor can get enough permission from the patient that they feel they have legal cover for some communication with family.

The letter goes very generally something like this- I am (name) (relationship to patient). I and (others) are very concerned about (patient). Recently she has (strange beliefs, unusual things she has done). She is having problems with (normal daily activities). This started approx ( some time frame) and (is or is not getting worse). She is very (emotional state). She is still driving. After much difficulty we have managed to get her to make this appointment. Please help. Sign name and put contact info.

You want to keep the letter short, under a page. You want to give enough information that the doctor gets a picture of what is going on, but not an exhaustive list. It needs to be clear. Let someone else read it to make sure that it communicates the problem well. Do not sugarcoat anything.

It is not at all unusual for someone with memory problems to worry about being "crazy" or worry about being committed. Do not continue to try to get her to mention her problems to the doctor, let the letter be your communication.

The initial tests the doctor will do are no different than normal doctor visit tests. They will do bloodwork, probably a urine sample, ask about medications and any other doctor visits or medical problems since last visit. They should also do a short cognitive screener, lasts 10 to 15 minutes. They might or might not refer her to a neurologist or send her for a CT scan or MRI. It depends on some extent on the doctor and her age.

Welcome to the forum, return anytime.

H1235

I agree with the above. If you are at the doctors office and they don’t give her a hippa form to fill out(maybe there is already one on file) I would ask for one. I also agree you need access to her online portal if there is one. If she doesn’t have one set up then just do it(probably not legal, but it’s in her best interest). I have communicated with mom’s doctor that way and found it works well. If I bring some things up at an appointment she would get very upset, but if the doctor brings it up it’s ok. When we had this first visit with the pcp she did a very quick test that mom actually did fine on. But because of my note she referred her to a neurologist for more testing. It was a few months before we got in to see the neurologist. After more extensive testing there her issues became more clear. Neurologist told us she should not be driving or live alone. I think this is a typical chain of events leading to a diagnosis. I am jumping ahead here, but one of the first things they told us when mom was diagnosed was to get legal matters taken care of. A DPOA medical POA are very very important. She also did a living will. Good luck!

M1

The above is good advice. Your dad or one of you kids needs to hold medical and financial power of attorney for her. If this is not already in place, talk to a certified elder law attorney as soon as possible (you can find lists by location at nelf.org).

If she is not recognizing her spouse and is delusional, this is already advanced dementia, and you cannot expect her to behave rationally or cooperate. Antipsychotic medications like Seroquel and Risperdal can help enormously. If she becomes aggressive or violent, you may have to take her to the emergency room and arrange for urgent admission to a geriatric psychiatry ward, saying that you cannot safely care for her at home. At the very least, find out which hospitals near you have geriatric psych wards.

If you look to the right under Quick Links and Groups, there is one for new members with a lot of useful information. Included is a staging tool from Tam Cummings that is useful. Delusions and not recognizing family members is typically a stage 5 phenomenon.

Keep us posted. You have come to a good place for advice and support. This is very hard.

Czechdeb

To all those who responded—THANK YOU! Hearing from others who has been through this is so helpful. We are super fortunate in that she and my stepdad made a living will years ago, so we are currently working with the family attorney to figure out how to apply it! But I will follow the suggestion to write a letter, yes we are driving her to the appointment (a point of great contention, but we clearly can't let her drive), and my stepfather also has access to her portal.

M1

Just one other note, don't mince words with the docs. Put it all out there. They need to know exactly how bad it is, including the not recognizing her spouse and the paranoid delusions of imprisonment. Don't be surprised if she refuses to go at the last minute or cancels the appointment, this is common. Another strategy many of us have used is to tell her that if she doesn't go in her insurance will be cancelled (new Medicare requirement, etc.).

Many primary care docs know how to use the antipsychotics in dementia, but many don't as well. You'll find out pretty quick which camp her doc is in.

towhee

Regarding the letter, since your mom is having memory problems, she is no longer an accurate reporter of her medical condition to the doctor. So you also want to include any physical symptoms she is having. There are some things that are fairly common in the elderly, so if she has any symptoms of a UTI, constipation or other bowel problems, is not drinking enough (check for color of urine first thing in morning), walking, etc. anything out of the usual, put that in. Especially, since if someone does go in with her, that person wants to talk as little as possible.

Getting her to sign any paperwork the doctors office has about family or emergency contacts is good. If she will let someone go in with her (so long as they do not answer doctor questions unless she asks), good. Often the "helper" sits slightly behind and out of sight of the person and only communicates to the doctor by nodding or shaking their head in response to the PWDs answers to the doctor. However you have to avoid her getting angry and telling the helper to get out, or telling the doctor that the helper is not permitted to know anything, as this means the doctor might not talk to the family.

If she tries to not to go, try telling her that she will be charged for a missed appointment. Also, if she was "with it" enough to actually make the appointment it is possible that she might sneak and try to cancel it without your knowing. Use the portal to verify that she still has the appointment, and also to check the doctor office visit notes afterwards. Good that you have access.

harshedbuzz

Another thought, if no one has POA on her, step-dad or you could make at attempt to obtain guardianship/conservatorship. The courts generally order an exam for competency which she would fail. It's an expensive way to make it happen, but it should be effective for someone as progressed as she is.

HB