How to get mom to her first doctors/neurologist appt.

Cambone

Hi there. My mother is 72 and has not been formally diagnosed with dementia. She has been in severe cognitive decline since 2020 and presents at stage 5 dementia. My father has been in significant denial of her condition since 2020. Even though I have had REPEATED conversations with him about getting her the care she needs and has been given copious amounts of resources on the subject, he has completely neglected to do the work it takes to get her a medical team including getting her to a neurologist. He says she “fights him and she gets upset” so he just never followed through. There was a recent incident where they came to visit bc they are relocating closer to me and my family and are looking to purchase a home. While they came to visit my father got covid so we had him quarantine in another part of the house. It was because of that did I finally found out how absolutely severe her decline was. My husband and I are in the process of figuring out how to break it to him that we are taking over her medical care and we are strongly advising to not buy a home until I get her the tests and proper care she needs. She cannot be left alone by herself. She cannot shower by herself.

Long explanation to get to the point - how do I get her into a dr’s appt.? She is going to fight and have a fit and breakdown so how do I physically get her into an exam room? So then she can get a referral to see a neurologist? And same applies to the neurologist once we have an appt.

darcytg

Hello Cambone,

So very sorry for the deep distress for you and yours as you find the way.

Maybe you could couch the first visit as an annual checkup. Supply the Dr with a written account of your concerns, request for the neurology referral and your observations, discreetly, prior to your mom being seen. Then, let the Dr suggest the next steps.

I imagine it depends lots on your mom's opinion of medical care in general, as to whether she'd be amenable to going.

I do hope you find the way to getting good care for your family. I imagine the stress your Dad's been under is quite daunting for him, too.

There is a thread here with the stages of dementia created by Tam Cummings (also on Tam Cummings' website) that I find useful in discussing/describing what I've experienced with my LO. Hopefully ,someone more tech savvy than I will post it in this thread for you. If not, it's very much worth your time to look up the stages and other caregiver documents on Tam Cummings website. Education and information will only help you as you move forward. Much kindness to you as you get your mom cared for well.

Glad you reached out here. There will be others along with far more experience than I.

Cambone

This is all great information. I truly appreciate it. We are all dealing with some extreme circumstances with a lot of moving parts and everything feels like it’s happening very quickly. We had to intervene and withdraw them from a home closing bc my father did not do the correct math (all the accounts are still in her name! ) and would have blown EVERYTHING on the house purchase - savings and all. The realtor was strong arming them into purchasing this house and even dissuaded them from getting a home inspection. The realtor knew my mother had no business signing any agreements. She is clearly incompetent at this point. So we are just trying plow through it all as best we can and get them buttoned up from every aspect. It’s really terrible that it had to get to this point.

Emily 123

Hello Cambone,

You'll have to test the waters to see what gets her out of the house and into a car.

You don't have to tell your mom she has to see the doctor or that you have concerns about her memory, especially if that spins her up. Avoid discussing what you see the disease doing to her-her capacity to sense how she's being affected won't be good, and she won't believe you. it will just agitate her and make getting her to where you need her to be so much harder.

Your goal is to get her in the door at the doctor's office, and whatever story you need to tell to make that happen is fair game. She may think there's nothing wrong with her memory (anosognosia), but be amenable to being told she needs labwork done, or to see a new provider because Medicare insists on a wellness check up, or that she needs a covid test. If she's resistant to the idea of having a doctor's visit, don't tell her that's where she's going. There have been people on the boards who have told their mom that they need to stop off at 'their' doctor's office for a blood pressure check while taking mom to lunch, and then have her come in to the room with them.

As darcy said, you want the care provider to know in advance about the behaviors you've seen before you get mom back in a room-many people give them a note at check in or use a health care portal. Ideally they would know she's coming in for a dementia assessment and may be resistant.

Chances are that your mom will forget going to the first doctor's office by the time she has a second appointment, so don't worry too much about that. Each day is a brand new day with dementia.

M1

Agree with all of the above. The first visit can accomplish a lot in terms of ruling out other medical things that can mimic dementia, but from what you're describing she's pretty far advanced. Whether a neurology evaluation is worthwhile at this point is debatable, you may get more mileage from a geriatric psychiatrist if there are specific behavior issues that concern you. But one step at a time.

Your father's reaction is not uncommon, but you must wonder about his own possible cognitive decline too-or he is simply overwhelmed. You need to get with a certified elder law attorney asap regarding getting power of attorney for healthcare and finances set up for both of them (look at nelf.org). This person can also help you assess their finances and get them qualified for long-term Medicaid if needed for assisted living or memory care.

Good luck, it's a lot to take on. Read a lot of threads here and you will learn a lot.