Help finding a doctor for my mother

478breathing

Hello. This is my first time on this forum. I am a daughter starting to support my mother who is showing signs of cognitive loss. I live out of state from her and need advice on how to find a good medical provider for her to see to get a diagnosis and start treatments.

Emily 123

Hi,

Usually you can share your concerns with her PCP, who can then refer her to a specialist for assessment. You would want to detail what behaviors you've seen. Often people with dementia don't realise they are having difficulty (anosognosia) and any suggestion that there are issues will result in denial and anger. So don't argue, or try to give mom examples, just try to get her to the doctor and discuss your concerns with them, not mom. Now might be a good time to tell your mom that you want to make sure you're listed as a contact at her doctor's office in case anything happens to her. She can also sign off on the provider sharing her health information with you. There's lots of good information here about financial and healthcare planning.

towhee

478breathing, welcome to the forum.

By any chance, does your mother not have a primary care provider? I ask because I have gone through four in the past two years. They keep retiring or moving. Doctors are burning out. Thank goodness it is a stable practice and able to hire new people. If that is the case for your mom, there should be a group somewhere that has a list of doctors accepting patients, you could try calling any practice and asking for info, or if your mom has Medicare advantage they might be able to help.

harshedbuzz

I would urge you to communicate with her PCP assuming she has one. Unless she's signed forms allowing the doctor to talk with you, it'll need to be a one-way conversation. An email or letter with your concerns bulleted can help the PCP start the process of ruling out treatable conditions that mimic dementia.

It might be useful if you travel to visit her for several days and arrange for the appointment then so you can attend. When I went with my dad, I always sat behind him so I could nonverbally confirm or deny his "creative" reporting.

Are you an only? Are you mom's POA? If there is no willing family member local to her, you may need to move her closer to where you live. Long distance caregiving is an incredible challenge.

HB

jfkoc

Please learn about diagnosis (online has a lot) and make certain her diagnosis is done following protocol.

jfkoc

mspencer

I have this problem with my father as well. We have seen his PCP and it was no help. There are very little resources and a lot of people seeking. I'd love to hear another option other than PCP

Jackie_K

@478breathing It has been a while since you've posted so I'm not sure if you need this anymore. However, I had the same issue with my mom. We noticed something was "off" about a year ago and I reached out to her PCP to see if she had noticed it too. She did but shared that my mom declined repeatedly to be tested.

I got my mom to agree to start letting me dial in to her doctor appointments (I live in the same state but I'm about an hour away from her), and this helped open the lines of communication with her doctor. My siblings and uncle also started communicating more frequently with each other about what we were noticing, and while each of us had small slices of the picture, sharing across all of us helped paint a clearer picture that something was really wrong - and my mom was excellent at hiding it.

Once we got my mom to agree to be tested during one of her doctor appointments, I had to make the appointment because she: 1) did not really want to get tested, and 2) kept forgetting to make the appointment anyway. I called every single area hospital and every appointment was at least a year out, and they would not even put us on a wait list, which was not helpful, especially since I wanted to get her on medication ASAP.

In the end, we wound up finding a private Neuropsychology practice in the area and they were able to get her in quickly (within a few weeks) for testing. I had to pay out of pocket but we were able to get the diagnosis and now we can get her on meds, etc.

Anyway, I think the bottom line here is that you are likely going to be the one pushing and making phone calls. It is a lot of work, and the medical system is beyond frustrating, but the challenge we had was that my mom was adamant about not being tested, and her PCP could not force her to do anything. Me reaching out and continuing to push and make phone calls is how we finally got to a diagnosis.