Talking to doctors

alzdaughter0sd2k

My mom is the caregiver for my dad. Even with parents permission I have not been able to get his neurologist to tell me any thing and my mom doesn’t ask technical questions about his illness. I do t know what his diagnosis even is.

M1

Welcome to the forum. Maybe you could write down a list of questions about what it is you want to know? There are some varying features of the different types of dementia, but it may not help you much from a practical standpoint in the long run. You can educate yourself online about the various types and the stages, but sadly none of it had much value in terms of predicting prognosis or survival. We all wish there were, but ....you may find more practical help on these discussion boards than anywhere. Sorry you are facing it but you've come to a supportive virtual place.

harshedbuzz

@alzdaughter0sd2k

Hi and welcome. I am sorry for your need to be here but glad you found this place.

I can appreciate where you are coming from. My own mom (who doesn't have dementia) comes from a generation that doesn't question doctors. Despite her intelligence and education, she is kind of medically clueless. I manage this in 2 ways-- 1) I have her signed up with the electronic patient portals and linked them so her docs and I have immediate access to all her records and 2) I attend her appointments with her. The former allows me to see her medical records and the latter gives me face-time with those caring for her so I can get a sense of whether they're a good fit for her.

Even with HIPAA permission, it's unlikely you're going to get a call-back from the doctor as he's already using your mom as spouse as his family contact. You can get around this by attending and asking. That said, many PCPs and neurologists avoid discussing dementia with the patient in the room as most families prefer it that way. Depending on how the appointment is structured, there may not be a chance to ask questions in the context of the appointment. Dad was seen at a memory center where he was taken to do some testing while we updated the NP or neurologist and asked questions. TBH, once dad had a firm diagnosis, continued care at the memory center was pointless-- they had little to offer. We did find a geri-psych to manage the meds for dad's anxiety and agitation which was better for our needs.

HB

TheCatWantsOut

I have had this same problem with my Mom. Being there in person makes all the difference. HIPAA forms or not, patient permission or not, her doctor never returned my calls. I could not get any info remotely from doctors, nurses, hospitals or anyone. During one particularly bad episode it took about 5 minutes to convince the hospital nurse to tell me if she was alive or dead.

In person they will talk to me though, without asking for any forms. I live several states away so in-person means taking two days off work to attend a doctor's appointment. But I did that a couple times, with a new doctor, and gave them my email address and phone number for contact info. That gave me the ability to set up a patient portal for mom, so now I can see her medical info on line.

korbkelly

I'm trying to do this too with my mom. It is SO hard to just get basic information, and yes I have consents/releases signed for me to speak with them. I just want to try and be as helpful as I can.

Ask your mum to have something signed from the office so you can talk to them yourself. may just be easier that way

eaglemom

It is so difficult to be a long distant care giver. Add in physicians and nurses whom don't respond and its maddening. My only thoughts, and what worked for me was whenever I was home, I scheduled a doctor appointment. That way I could be there, meet them, and more importantly, let them know that I wanted to be involved in my mom's care. I made certain the physician had all of the proper paperwork filled out and signed - and I too had copies.

Then, just because I could a couple of days later I had cookies sent to the office with a note thanking the doctor & nurses for meeting with me and knowing that my mom was in their good care. Yes, its probably a bit of a stretch, but you know, it worked. I just made sure they knew I appreciated them - I shouldn't have to do that, but if it kept open communication between them and myself I thought it was worth it.

eagle