Attending medical appointment for cognitive assessment virtually or not at all. Which one?

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Attending medical appointment for cognitive assessment virtually or not at all. Which one?

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My 90yo mother with visual, hearing, and cognitive impairments lives alone in her condo (at her absolute insistence - AL trial was an epic fail), with home aides three days a week. I live 1000 miles away, my brother lives in Europe. He and I are both financial and healthcare POAs. I manage all her bill paying, scheduling of appts, etc. Her cognition/emotional state is deteriorating but she refuses to see her PCP for anything. I have searched and called and filled out pages of forms and managed to get her an appt with a geriatric specialist who can do *proper* cognitive testing for an evaluation…in 3 months (sigh). They recommend a family member attend the appt. Neither of us can travel to do this, so we will discuss options for telehealth or by phone. But the main issue is: my mother distrusts and despises all caregivers, medical professionals, et al. She tells everyone she ever talks to how awful we are, tells each of us stories about how mean and bossy and controlling and scary the other is. She complains endlessly to us about all her ailments and difficulties, but then denies all of it to professionals. Basically, she tailors what she says to her audience of the moment, and the story changes with each telling. My brother agrees with me that if one or both of us tuned in by phone or telehealth, Mom will confabulate, distort, manipulate everything she says or admits to because she knows we are listening. It would likely be even more pronounced if we were physically present. At least the doctor would not have *that* element of distortion to sort through. Mom has even said to me, after regaling me with symptoms of tingling, dizziness, panic attacks, sleeplessness, itching, etc., that “but then no one believes me because you all think I’m crazy.” At the same time, she fights taking any meds for anything, and tells healthcare personnel that she’s fine, nothing is wrong, etc. So I guess the question is: do we attend this appointment virtually, or not at all? Which might be likely to produce a more valid result? And hope to speak to the doctor separately afterward? This doc specializes in cognition/dementia issues, so presumably knows how to figure out this kind of issue…but I don’t! Thank you, everyone, for this place to vent, ask, and get understanding and sympathy.

Alzheimer's & Dementia Care Decisions Diagnostic Criteria Long-distance Caregiving Medical Care

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Wow, I thought my husband and I were the only ones going through this. We can totally relate to most of what happenening in your situation. We are new to this venture so , we can totally relate. My dads Neuro appt is a month away and let me tell you , it seems like decades away due to my dad flirting with the truth at the bank ugh, he calls to have funds transferred from one acct to another and then claims he didn't!, This example is just a crumb of the pie. And the Dr's don't help much because they say Dad is pre-dementia. However, they are not with him 24-7. I try to explain and they say he is fineeeeeeeeeeeee smh. I finally got to get him an appointment , hopefully I'll have evidence to back me up....Good luck

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Reply to scorpio1943

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I have been down this road - but not quite as difficult as yours. I would definitely attend the meeting by phone and encourage your brother to do the same. Your POA status should allow you to speak with the doctor after and get a report. Typically the doctor will interview her and then ask questions of the family. If you don’t want her in on that you could ask for a separate conversation. While he is conversing with her remain quiet even though that is hard to while she makes one false statement after another. But do make it clear to the doctor that there are two different realities going on here. Assuming the doctor assesses her as “not capable of making important decisions”, I would then get her assessed by a second neurologist to hopefully get the same opinion. Your mother will likely agree to a second opinion because she will disagree with the first. That will help you get her to go for the second. Having two similar professional opinions will be very helpful to you and your brother going forward. It makes your POA standing more powerful. It will also help you gain legal guardianship if you have to go that route. I think that is where you are headed in order to manage her care without interference from her. Don’t call social services unless you want other people managing, and mis-managing this situation. I would only recommend that if you and your brother are ready to completely walk away and leave her fate to others. That is ok too - if you have to.

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Reply to jemfleming

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Get a telehealth appointment - preferably with video - so the medical provider can assess her. You can follow-up with the provider with your concerns that do not get addressed at the appointment. Since your loved one is not open to medication and treatment, you might need to get used to the idea that:
1 - Her problems will continue to get worse over time.
2 - She could do better if she were to take medications and/or follow the advice of the provider.
3 - Ask the provider what options you have to keep her safe and as healthy as possible - given her issues.

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Reply to Taarna

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RunningOnFumes: You may have to have an in person meeting.

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Reply to Llamalover47

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When my mother underwent her battery of cognitive testing, the neuropsychologist met with us together for about 10 minutes, and then he had me wait in the waiting room while Mom took all the cognitive tests (about 3 hours). The results were very accurate and showed the areas of poor functioning pretty clearly. I didn’t have to say that she confabulates and showtimes. In your case, attending the first part of the appointment virtually would probably be good. Then the doctor can continue the testing without you after the introductory part is finished. The evaluation is VERY detailed and objective. I assure you that the lying, manipulating, and emotional behavior is really beside the point for these tests and will have little effect on the results.

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Reply to mom2mepil

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Someone either needs to take her (use a disguse of taking her out to lunch) or you wait until she ends in the ER. Then you ask the social worker for an assessment since she will be an unsafe discharge reguardless if she yells and screams.

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Reply to MACinCT

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As above. If she gets the appropriate assessment , and it looks like she will, she cannot fudge the test. With an accurate assessment, you can request a guardianship from the court . There are paid guardians you can employ so it does not have to be you or your brother. A POA will not be enough.

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Reply to Jdjn99

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Let the doctor know ahead of the visit of your concerns as outlined here, by letter or patient portal. Give a copy of your POA in case it’s accepted. Ask the doctor’s opinion of you attending the appointment virtually. Otherwise accept your membership in the club no one wants to be in, “waiting for the event” the inevitable time that’s coming when an event forces change for mom. Many of us have been there. Something like 15 or so hours on the floor after a fall (while his emergency call button was on the charger) was the event for my dad. For me mom, it was much worse, a hemorrhagic stroke. Not to scare you, just know something will happen to change all the denial and refusals. I wish you peace in all this, knowing it’s so very difficult

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Reply to Daughterof1930

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I’d suggest that you write a letter (printed out if possible so that it doesn’t just disappear into the ether) to the geriatric specialist, explaining what you have told us here. Make it clear that you and B are willing to attend (though it isn’t easy), but you know that it will distort what she says at the appointment. You know that if you don’t attend, she will complain untruthfully about you and B. You know that “tuned in by phone or telehealth, Mom will confabulate, distort, manipulate everything she says or admits to because she knows we are listening”. Ask the doctor what he suggests you do for the meeting. Also ask to “speak to the doctor separately afterward”.

Perhaps you need to think about how things would go if M had no-one – not you or B. Yes you have my sympathy. You don’t want to walk away from her, painful though it is, but it’s hard to come up with a practical approach. The doctor might have some good advice if he is fully informed.

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Reply to MargaretMcKen

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If this is REAL testing with MoCa or SLUMS tests, there is no way to "confabulate" your way around it. The results will be clear.

What is more clear is that your mom at 90 either IS NOW declining or will very soon and you will be getting "the call" which is something many of us here have already had. That call will be from police, coroner, building management, hospital or some such.

I am afraid, if family is to hope to manage for mom, a trip will be necessary at some point. If not, she would be much better to at some point be a ward of the state. You really cannot manage any of this long distance. I got the call from So Cal to No Cal, and it still required the trip and my presences often.

So sorry and wishing you luck.
Let us assume your worst fears are correct, and mom can talk her way out of this?
The worst is that at 90 she may die at home. There are worse deathes, such as sitting endless hopeless days in a nursing home. As an 82 year old ex RN who saw her partner stoke out before her very eyes a week ago last Thursday I can tell you there are worse things than death.

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Reply to AlvaDeer

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Thank you - I was hoping you'd weigh in, as your knowledge and experience is so helpful. Both my brother and I have in fact traveled to Mom's twice each, and every time it was a nightmare. She went ballistic on my brother and threatened him with calling the police and threw him out. She told everyone I had just left without saying goodbye (utterly not true), among a myriad other complaints. So neither one of us is eager to repeat the experience, and make an expensive, fruitless, nightmare trip. She has had a MOCA test given by her PCP a year or more ago, and I was told she "did all right," but that's all the info I was given. She has had two psych consults before that, once during a UTI when this all started, and once when she said she wished she could die while in the ALF (she has been saying she wanted to die since my parents separated FIFTY THREE YEARS AGO). Both consults shrugged and said she was not a danger to herself or others and discharged her. So we really have no actual medical documentation of her cognitive status. Every single effort we have made to help her has been resisted, objected to, complained about, or undermined. I'd turn her over to a guardian (NOT ME!!!!!) in a heartbeat, but have to AT LEAST have SOME documentation of her mental status. I guess I will try to have a conversation with the doctor's office and see what their thoughts are.

I am very sorry about your partner. You're absolutely right, there are things much worse than dying.

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Yes, you need to attend. Make sure the doctor knows you need a letter of diagnosis on clinic letterhead, so that your and your brother’s PoA can become active. Your Mother sounds like she has paranoia, which is a feature behavior in early dementia (my Mom is in the same phase).

I wish you success in getting her proper care.

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Reply to Geaton777

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Attending medical appointment for cognitive assessment virtually or not at all. Which one?

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