I'm reaching out for advice regarding my mom who is in the early stages of dementia, which appears to be progressing rapidly. She lives over a three-hour drive away with her husband, who also has health issues. Unfortunately, it seems he's not fully aware of the extent of her condition.
We've attempted multiple times to accompany her to a neurologist for an official diagnosis, but we've encountered obstacles. On our third attempt, the appointment was either rescheduled by my mom or mistakenly booked with a nephrologist instead of a neurologist.
My brother, who is a physician and her medical directive, has been granted certain permissions by her primary care physician. However, most doctors are hesitant to give appointments or share information with us. We're finding it incredibly challenging to coordinate her medical care, often taking days off work only to find there's no appointment scheduled.
Does anyone have advice or know of resources that could help us navigate this situation more effectively? Any suggestions would be greatly appreciated. Thank you.
I would say that too much attention is being paid to Mom's direction about appointment.
Appointments need to be made, you arrive (whomever the designated people are) and get Mom all dressed, packed, and put into the car and off you go. No chit chat about this and that.
Someone needs to take charge of the situation and just get it done.
This will hopefully all be much easier once the memory care has accepted Mom and she is in care.
Given that you have an MD DIRECTLY involved here he will know all about what to do to get palliative care on board so that there can be a lot fewer visits to any specialists.
Just as an add on, do consider how much of this may be done by ZOOM. Time to catch up with the kids in what's new in tech to make life easier.
Either your brother has to take over now or you have to drive down to your parents home and stay for awhile. Observe the situation firsthand, see if they're at ALL safe living alone, set up medical appointments for them, guiding and helping them every step of the way. If brother has POA, he may be better suited to do this, but both of you need to be involved, Imo. Neither mom nor dad sound capable of decision making or setting up appointments anymore.
If need be, you can hire a Geriatric Care Manager to handle this, but not before laying eyes on them yourselves.
Best of luck to you.
If you, not your brother, are the one responsible for getting your parents to appointments and coordinating all of it, you should request (i.e., demand) that your parents sign the proper forms for you to access the patient portals online. It would give you the ability to make appointments and cancel them, see doctors' visit notes, request prescriptions, check their lab work, and send messages to their doctors, who would then message you back. All this can be done on a computer from where you live. Without that, doing what you're trying to do is like attempting to ride a horse with two hands strapped behind your back. Of course their doctors won't share your parents' info with you if your parents haven't given written permission on the proper forms - it's illegal for doctors to do that!
If your mother has dementia, she is no longer capable of making appointments, as you've probably figured out. Rely no more on her. Ditto your father, who may have dementia as well. And in both cases, they may have progressed so far down the dementia path that they aren't capable to sign the forms that would give you access. Have a conversation with your brother in which you state that you can't provide service for them anymore. See what he has to say, and anyway, I can't imagine why he isn't doing more for them already.
You may need an eldercare lawyer before this is sorted out. I wish you the best of luck. And BTW, be concerned about your parents if they live alone. With what you describe, I suspect that they should be in assisted living, where the 24/7 staff would be available to take some of this load off you.
PS Don't even think about taking parents to live with you. Read some posts on this forum and you'll understand why that is a bad, very bad, idea.