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Merla

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H1235

My moms PCP saw her every 2 or 3 months and did a very basic test once a year. She never suspected a thing. The doctor knew she was living (basically) alone and that she was driving. It was only at my insistence that she saw a neurologist. After 2 hours of testing the neurologist said she should not drive, should not live alone and we should see a lawyer right away to get legal matters taken care of. The PCP was clueless. Your mom is their patient and they serve her. Some may feel it’s unethical to work around or behind a patients back. Even with the diagnosis my moms sleep specialist spent 15 mins explaining how to change the settings on the cpap machine. It was big and bold on the papers that she has dementia. It’s like they don’t even have a basic understanding of dementia. Did you get the referral to a neurologist? How is your mom, will she even go? So frustrating.

harshedbuzz

@Merla

Some PWD maintain the ability to showtime (temporarily hold it together for a doctor or the interaction of a friend or family member who doesn't see them often) well into the disease. I witnessed my dad showtime the day he died from complications of aspiration pneumonia. It can be hard for a doctor to get a sense of what you're seeing during a 10-minute visit at a time of day when the PWD is generally most lucid.

The other piece is that her doctor is looking out for her— not you. There are some, especially PCPs, who can be in a position of gatekeeping, who are very reluctant to "go there" which makes it hard to get help.

We took dad to my parents' shared PCP to get the pre-admission physical exam required by the MCF. The doctor— in his role as dad's advocate— mentioned them both going to an AL together. I. Was. Livid. Does this man think we were unaware of that as an option??? I needed dad out of the house. Not only was caregiving destroying mom's health, he'd taken to murder-suicide ideation at night.

HB

SusanB-dil

Yup, I agree with HB... ! We've run into the same. MIL had just seen her new PCP, as her usual had left to go elsewhere, and the new just treated everything like all was fine. We suspected a UTI, and told her so. PCP had no idea what to do about it, as MIL didn't need to 'go'. We took her to urgent care the next day, and those folks were phenomenal! Yup, she had UTI. They even followed up 2 days later and said that after further testing, she needed another antibiotic. Now, why in the world couldn't the PCP handle that? PCP asked her if she would like to just go ahead and do testing herself at home. Wait, what?! We told her no! MIL not capable of all that.

PCP treated her respectfully, but all is NOT well. MIL showtimes, so her answers to any questions are often 'yeah', 'yeah'…

We are looking for another PCP. There are other threads on this, too.

SusanB-dil

I'm so sorry you had to deal with that experience. ((Hugs))

harshedbuzz

@Merla

That does sound like the stuff of nightmares.

What often happens in terms of getting to a diagnosis can take some time. Most people start with a PCP who does a screening and bloodwork/imaging to rule out lesions or other conditions that mimic dementia's symptoms. From there, many people move on to a Memory Clinic or neurology practice focused on dementia. This can take some time; I put my mom on the callback list in April (her PCP ordered the initial testing— she had Lyme Disease and gave a referral) at the memory center where my dad was seen. I expect to hear from them in about a month to schedule an appointment 4-6 months (fingers crossed) out. They've been slammed since Leqembi was approved and many folks are seeking the center out as they offer the infusions.

Once you're seen, the neurologist will probably order further testing (maybe a PET scan or in-depth cognitive testing) which could take 1-2 months IME, after which you'll have a second consult to review findings. Unless you mom is very impaired, the doctor may wait 6 months to evaluate her again before giving a diagnosis beyond MCI.

HB