HOW to finish the diagnosis for a very unwilling patient?

jmack8

My mom has been suffering with memory lapses for some time, but it was absolutely unacceptable to talk about these memory lapses! However, less than a month ago, she had a major episode in front of us where she didn't recognize my stepfather (her husband of 44 years) and was convinced we were trying to steal her money. Since then, we've been trying to get her to various doctors visits. We got her to do the initial analysis after like 3 tries! We provided a history but she did get examined, and got cognitive testing, which yielded a diagnosis of : major neurocognitive disorder due to unspecified disease, severe w/ other behavioral disturbance.

In order to complete the process, the doctor tells us we still need an MRI and a neuropsych eval. I am really having a hard time seeing this happen! I think I might be able to convince her to get an MRI for her health. My FIL just passed away from a brain tumor, so I THINK I can get her into the office on that pretext and might be able to persuade her to stay for the entire visit. I'm not at all sure I can get her to go for the neuropsych eval. Apparently it is 4 hours long. She has NO patience, and is highly defensive about her memory issues and in some kind of denial about her level of anxiety and paranoia. These are SEVERE issues for us right now. She sometimes has full days where she hides from various family members. She will have the same stressful conversation 100 times a day.

I guess I just need to know if there are any strategies I'm not thinking of for getting her evaluation completed! We just try to work with whatever mindset she has the morning of the eval. One appointment the pretext was that she was going to get married to my stepdad by the doctor. One appointment she actually decided to cooperate!

And secondly, what if she NEVER consents to testing? What can we do?

THANK YOU!

M1

Welcome to the forum. I would agree that the MRI might be helpful (it will rule out tumors and normal pressure hydrocephalus, and may show vascular changes), but beyond that I wouldn't push too hard for other diagnosis. She is clearly demented, probably fairly far along, and having behavioral disturbances. Vascular dementia and Alzheimer's are the two most common types. If you take her anywhere, I'd try to get her to a geriatric psychiatrist, they may be the most helpful in terms of tamping down the paranoia and behaviors. Specifically, she would probably benefit from an atypical antipsychotic like Seroquel or Risperdal.

If you look to the right under Quick Links and Groups, there is one for new members that has a lot of useful information, including a frequently referenced staging tool. what you are describing in terms of not recognizing her spouse and paranoia are late-stage symptoms (at least stage 5 in all likelihood). There are not likely to be interventions that will help her at this stage other than treating the anxiety and behaviors that arise.

You have come to a good place for advice and support. Read a lot of threads and you will learn much, as well as feel less alone.

SusanB-dil

Hi jmack8 - welcome to 'here', but sorry for the reason. Totally agree - that the MRI would be useful, and to check out the links.

Also just a quick note - when a lot of us need to get our LO to a doc, we use fiblets. "It is required by your insurance." or if a refill is needed, that "You can't get a refill without seeing doc". Yes, the pretext you describe might also work, but don't try to really reason with her, the reasoner is broken.

Is she living alone? How is she hiding?

Daisie

Hi, and welcome! I agree not to push too hard for other diagnoses. Two years ago, I tried to get my mom, who has moderate/severe MD, to undergo more cognitive testing. It stressed her out way too much (and me, too!). Even her PCP said that additional diagnoses may not be worth the stress beyond the initial dementia diagnosis. She's had CT scans as the result of several falls that show she has "marked" brain deterioration, so that's enough for me. She's also 90, so at this point, it's somewhat moot.

Of course, she's also in denial about the dementia, too. I'm struggling to learn not to fight anything she says or does anymore unless it's unsafe. It's hard, but I've been getting better as I wait to get her qualified to get into long-term care.

Best of luck to you, and you found a good community here!

jmack8

Thank you all! We're with Kaiser insurance and they don't give us many resources to be able to get access to a geriatric psychiatrist. I think above all things I'd like to get her on some kind of medical regimen that will help her feel more peaceful. She's just miserable when she's feeling paranoid and there is so little we can do to help alleviate her sadness. We try to comfort her and answer her gently (not trying to reason or correct) but it honestly brings such little peace! I was hoping that a diagnosis would help get us matched to meds but it looks like we still have those two significant evaluations to get through first and I'm not sure we can make it work!

I will say I've tried twice to work through the case manager who needs to confer with the doctor regarding at least a Zoloft prescription but we've been left waiting twice. I will just camp out at the doctor if that is what is needed.

She lives with my Dad. Currently my sisters and I have been taking turns staying with them as well to help them whether this big transition. But honestly, this seems to upset her more than it helps almost! My sister is going home on Wednesday and we'll see if she's less agitated. She cycles between not knowing who we are, to thinking we're all stealing her stuff, to thinking we're my Dad's polygamist wives(!), to thinking she has two husbands but being sort of calmly ok with it!

She leaves the house and sits on her porch to hide. She has also walked to a friends house and hidden behind her bushes! It was hard because I was tracking her on the findmyiphone app but it just looked like she was at her friend's home!

I will check out the new group!

mabelgirl

You can’t go to a physician directly? My mom’s PCP nixed the MRI because it really does nothing more. Her meds were prescribed based on cognitive test done at a neurologist office and even that report stated an MRI was not totally required. If it were me I’d go directly to the doctor as both your mom and you need her calmed down.
Prayers to get the care needed.

H1235

I agree with the above. I also second the need to talk with her doctor about medication that might help with the anxiety and paranoia. It must be very uncomfortable for her to feel that way. I want to add that it’s not denial, it’s anosognosia. This is a lack of awareness of her symptoms. This is very common with dementia and it is difficult for both her and family. There is no convincing her or reasoning with her. See rules 1 and 2. There are many other resources in group for new member, but I’m going to add two that I think are the most helpful. Good luck.

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

jmack8

Thank you all. No. She can't go to her PCP. I actually wrote a letter to her PCP prior to her latest (previously scheduled) visit and during the visit she's like, "I can't prescribe anything for you. You have to get it through the geriatrician." and the geriatrician is not returning my messages. I LIKE the geriatrician so I'm hopeful this is just a glitchy "new patient" type of thing. Pointedly, I can't use the usual recourses for communicating with the doctor (email through Kaiser) because I'm not yet officially able to converse on her behalf. We're working on that part!

I'll continue to move forward on the meds. I'm actually kind of peeved that we haven't been offered more resources yet! I do think they're hopeful that we'll complete the MRI and Neuropsych evaluation but they have to know those will be huge hurdles to clear…and in the meantime, quality of life could be improved!

Anonymousjpl123

@jmack8 it is great you are working on getting authority to advocate on her behalf. This is KEY. My two cents? Others have given great advice; but the legal piece is really critical.

Does anyone have power of attorney? If not, I would start those discussions with your family. It’s so much easier to do that then file for guardianship. I know this may sound extreme, but it does help so much with lining up services.

Also, you can call the Alzheimer’s association hotline. They are staffed by Trained professionals who really know their stuff. Please keep us posted and let us know how it goes!