PCP is supremely unhelpful for my Mom what steps to take?

[bisous]

Things are calming down a little bit around my Mom with her dementia diagnosis although we know it is going to be a hard road!

One thing we keep running into is that her PCP is NOT helpful. I'm going to give you two versions. If you want the backstory, here follows her major transgressions and the reasons why she's unhelpful! If it is too long, please skip to the next post and I'll summarize and ask for advice!

OK long story--

First, she refused to listen to my concerns back in February when I wrote her a note that I was worried about my mom's mental state and that I couldn't talk to her about it. I wanted to know if she could do some kinds of assessments or guide her to be evaluated in some way that felt less threatening. She ripped up my note and told me we needed to do a family intervention. So that was annoying. Partly because we felt like we'd all tried to talk to my mom in different ways but she was just really defensive. Since things have gone south lately, I've been feeling guilty that I didn't press harder back in February, but when I look at the things I did try to do, I also think I could have been better supported by her PCP!

Second, after her major episode, I tried really hard to get her an appointment to be seen. Honestly, it was so bad and so acute that if she (my mom) had consented I would have driven her into the ER. But she would not! I tried reaching out directly to her PCPs office with verbiage that said, "I know I can't discuss my mom's health with you, but she's having an acute issue. Would your office at least be amenable to seeing her sooner? It is very serious" and I got a generic, "we can't discuss our patient's health" message back. The first appointment with her PCP was for 3 weeks out from our incident!

Third, we got some traction during that time by seeing other providers. (We're in the Kaiser system). But my mom was holding out to meet with her doctor. (who wouldn't see her sooner). One day she woke up and decided she was going to get diagnosed for memory issues. It was like a miracle! So I went in and spoke with the scheduler in the office directly and got an appointment within 15 minutes!!! When she finally DID see her doctor, my mom followed her counsel, and submitted to several hours worth of cognitive tests confirming her diagnosis. It WAS facilitated by her doctor who she seems to trust more than anyone else she sees.

Fourth, even though the diagnosis did progress she still walked out of her appointment with the geriatrician before receiving treatment options. So I got excited that we'd kept the original appointment (the one that was set for 3 weeks from our first call!). I again wrote another note to the PCP saying that she'd been successful in getting a diagnosis but that she was resistant to any suggestions of medication, would she be willing to talk to my mom about that.

And this is where I'm getting angry. During the course of that appointment, not only did she tell her that she can't help her with anything. (We'd been hoping for an SSRI prescription) but she also brought all my confidential notes out during the appointment to hand back to me IN FRONT OF MY MOM. So she did nothing helpful AND she disclosed that I'd been corresponding behind (my mom's) back.

[bisous]

So short story--

My mom's PCP ignored my initial warning calls about my mom's health when I asked her to quietly and discreetly look into matters of her memory loss and dementia. She refused our appeals at the beginning of this acute period of paranoia to see her sooner, despite our pleas that it was actually very urgent. She blatantly disregarded our attempts to discreetly discuss my mom's declining mental health (she had forbidden any of us to speak about it to anyone) with her and in fact revealed that we had attempted several times to talk about her memory/dementia issues by giving me back my letters in front of her!

I feel like this is problematic for three reasons:

1. it demonstrates to me that she isn't very well versed on how to deal with a patient with dementia. The PCP keeps wanting us to "have a conversation with her" about her mental health issues but I've since learned that almost the primary principle of dealing with dementia is that it cannot be reasoned with.

2. She seems to be unwilling to work with us as a family and since my mom's memory has declined so much, we are going to be the people who decide most of her care! She's either unaware of that fact, or she's willfully ignoring that aspect of care for an older person.

3. For whatever reason, my mom still loves this doctor! So she'd be the PERFECT person to communicate to her that she'd like her to go on Zoloft (for example) but she's so difficult to communicate with (won't see us when we need her to, she won't communicate with us via letter) and she's unwilling to be a team player with either us (the family) or the geriatrics department.

I'm unsure of what to do.

Part of me wants to make a formal complaint about her. However, I would rather work with her to improve first! Not only because I feel like it is important to allow people to improve before you go over their head, but also because I do think she can still be helpful!

The easiest thing would be to simply find a new doctor through the Kaiser system. But there's the aspect that my mom still really loves her!

Is there any way to improve this experience? Any chance that talking to this woman will help win her over to our cause? If I do go over her head (complain to the higher ups) will that even do anything?

Any advice welcome!

[georgiegirl]

Find someone new. She sounds horrible. In your town especially, all primary care doctors should be well-versed in dementia. My mom has been through several primary care doctors (she had to switch healthcare systems.)


Sent from my iPad using Tapatalk

[Indianamom2]

A couple of things:
1. You could speak with a practice manager about all of this, but in my experience, that will just make the provider mad and she already sounds like she's got issues.
2. If I could change anything about how I have handled some of my own health issues, it would be to change doctors faster than I did. I tried to give people the benefit of the doubt and more than one chance, but it only ended up hurting me. If things aren't working, don't be afraid to make a change. I recognize that it's difficult because your mom seems to listen to this doctor, but this doctor isn't listening to your very valid concerns.
3. Most primary care providers are SUPER busy these days, so she may very well have not had an appointment any sooner, but given the acute nature of your issues, it seems like she would have at least reached out and explained or tried to help you.

[bisous]

Find someone new. She sounds horrible. In your town especially, all primary care doctors should be well-versed in dementia. My mom has been through several primary care doctors (she had to switch healthcare systems.)


Sent from my iPad using Tapatalk

I mean, I really think someone else would be better! And yet she's the "only doctor my mom will listen to" right now. I want to come up with context for finding a new doctor! Maybe I'll work on it. Like she's cutting back her practice or something!

[California]

At this point the primary doc has proven herself to be a hurdle rather than a helper. She sucks. Would it be possible to bypass her and just meet with geriatric department?

With your mom, I have heard staff at residential care facilities have success by asking for help. IE: ?Mom, Dr. PD (primary doctor) is really busy. It would help her out if we?d make an appointment with this other doctor. You could let Dr. PD know what you think of this new person.? And then for the appointment, ?Come on Mom, let?s go check out this doctor, and we can let Dr PD know what we think of her.? You probably can come us with something better but that gives you a general idea.

[bisous]

A couple of things:
1. You could speak with a practice manager about all of this, but in my experience, that will just make the provider mad and she already sounds like she's got issues.
2. If I could change anything about how I have handled some of my own health issues, it would be to change doctors faster than I did. I tried to give people the benefit of the doubt and more than one chance, but it only ended up hurting me. If things aren't working, don't be afraid to make a change. I recognize that it's difficult because your mom seems to listen to this doctor, but this doctor isn't listening to your very valid concerns.
3. Most primary care providers are SUPER busy these days, so she may very well have not had an appointment any sooner, but given the acute nature of your issues, it seems like she would have at least reached out and explained or tried to help you.

This is great advice. I really appreciate it. Maybe even though it is painful NOW is the time to shop around and find a particular provider (within our insurance "HMO" of sorts) that will be responsive to our concerns about my mom. I feel like the dementia experience is extremely different than so many other health concerns. It is like dealing with a very old toddler who still has bodily autonomy!

I do think she was super busy. I also feel like there are areas of medicine where the usual constraints for protecting a PCPs time did not serve us. When I was able to talk to the front office staff (which is a different group than the appointment schedulers who are all remote!) then I got an appointment immediately! Geriatric concerns just don't seem to trigger the "urgent" response that certain conditions are reserved for. For example, same health system if DD has tummy issues it might take a month to be seen, but if she is on day 7 of a severe "cold" and now has a fever, they reserve a few spots each day to see their patients and DD will get a same day appointment. I think my mom was essentially at the same level as that latter category, but she didn't trigger the conditions the schedulers required.

I really need to think about how to navigate the health system for my mom. I don't know that things will get easier, so maybe the next step is to find the best office, with the best nurses and providers to help us!

[jse107]

It's so tough. You are doing all the right things to advocate for your mom. I'm sure if she could, your mom would appreciate how much you are doing to try to support her.
I can't remember--does your mom have a Durable Power of Attorney? Is only your dad on it?
One thing that might be helpful--because there are so many parts and pieces to keep track of--is finding and working with a medical social worker. When my mom was ill, the medical social worker was able to help us navigate various systems, think about next steps, make phone calls for us, explain various long-term care options, figure out insurance, etc. She also worked with my mom to help her advocate for what she wanted.
https://www.socialworkers.org/Career...in-Health-Care