Advice(4)

Daisie

Hi. I'm trying to learn how to navigate my mom's dementia as it's suddenly gotten worse.  

We both see the same primary care physician. I'm allowed to make appointments and do things on her behalf if she's unable. However, is it allowable for me to have a doc's appointment to discuss my mom and the stress it's causing me without her present? My doctor's MA keeps cutting me off at the pass when I try to make an appointment, and I don't know if she's within reason or not.

Thank you! 

Stuck in the middle

Definitely talk to your doctor about your stress.  My doctor knows about my wife and son, although they have never met, and thinks the stress of caring for them is part of the cause for my high blood pressure.  Your doctor might be able to refer you to someone who can teach you some relaxation techniques, and/or have other suggestions to help you be more resilient.

M1

If the MA keeps acting that way, I'd ask to speak to the practice manager, no question.  You are entitled to make an appointmetn without having to explain yourself.  Geez.

ButterflyWings

Was this your mom’s PCP originally or yours? I’m thinking it sounds like you need separate Drs Several members have experienced the Dr prioritizing one patient/client to the detriment of the caregiver. 

I don’t know the system as well as M1 would, but seems like the assistant wouldn’t do that on their own. Could the PCP be feeling like there is a conflict of interest (there is not if you are POA, or even just HIPPA authorized) 

Seems like mom needs some specialists anyway - Geri psych & maybe neuro. You (or someone) will need to be increasingly in charge so if this PCP or their MA can’t respect that now it needs to be addressed ASAP. I’d escalate with no worries at all. They need to work with you as the lead or you need to change docs I think (possibly for you & maybe for her).

* Added: “suddenly getting worse” often means there may be a silent UTI that is causing your LOs dementia to ramp up with no other symptoms. You want that ruled out quickly. They can be dangerous for PWDs even leading to sepsis. Ask for a culture. Will her PCP and nurse respect your requests on your mom’s behalf? 

Fairyland

I found when I first started this journey, I got the instant reaction from the frontline receptionist types like I had pulled a string on a Chatty Cathy doll - no we can’t discuss anything about mom with you.

Once I went in with her to the doctor (on the pretext of her annual checkup) and gave doctor a pre-visit email about the possible dementia developing, they did the paperwork and I got the all clear to deal with her issues. The blocking stopped.

Later got the POA done and they made a copy.

I have my own PCP and they were immensely helpful to me as well about my struggles with her.

mommyandme (m&m)

I had my moms PCP first and then got mom signed on when we moved her here.  When I’ve taken mom for an appt, the doc asks me about how I am doing during moms appt.  Her neurologist does the same, therefore, I cannot reconcile the cold reception you receive.   Seems to me a good dementia medical team would advocate for all the family members involved.  I’m sorry your needs are not being addressed as they should be.  You are so important in this too.  I hope you find the care you deserve as well.