Input on How to Get Parent to Doctor for Diagnosis

Grace&Mercy

After a recent visit to my parents' home, I have realized my mom needs to be treated for this horrific disease. It has been three years since I have seen my parents; but in telephone conversations, I have been suspecting that Mom is worse than Dad has shared with me. Mom has fought Dad any time he has tried to talk about the possibility that she has dementia and most likely Alzheimer's; and she has refused for years to go to the doctor to discuss/be tested/treated. I am confident she is not in the beginning stages of the disease; but, she still has a lot of *$%& and can still do a lot of things for herself. Mom is extremely angry at Dad because he no longer lets her drive (she has had to call to ask how to get somewhere), cook (she has forgotten about a few meals in the oven or on the stovetop), pay bills (she has made several late payments or none at all), nor be out of his sight when possible (she has been known to just take off when mad at him). I am interested in hearing from other caregivers/family members of how you have handled getting your LO into a doctor to discuss their disease. My Dad fears retaliation from Mom, and since he is the one who lives with her and provides her care most of the time, I am trying to figure out the best course of action. I now live 7 hours from them, and am not able to be with them for more than about a week or two at a time. Mom refuses to allow my two siblings to help out, and is extremely suspicious as to why they "think they can boss" her around. Thank you in advance for input/advice.

May flowers

Welcome! Sorry for the reasons you are here. I am sure someone will reply with some helpful ideas - this comes up a lot. I believe the term is anosognosia when  a person does not recognize/accept their condition. My FIL never did, he just thought he had memory problems. We were lucky that my FIL did not fight going to the neurologist when he was diagnosed - but it was part of several doctor’s visits for both my in-laws after they moved here to establish them as new patients. But he did pushback against many things like our taking over paying his bills.

I wonder if during your next visit you could take her to a couple of doctors visits, including a neurologist, and maybe it won’t be as obvious to her what is happening. You could even maybe make it seem like both of them are going for dr visits. Others probably have better ideas.

M1

Welcome to the forum.  I tell the story frequently that when I first noticed dementia symptoms in my partner 8 years ago, I wanted our PCP to tell her she had dementia, and thought there would be this "aha" moment where she would then see that she could no longer function in certain areas and that she was going to need to defer to me.  He laughed at me, and he was right:  She was furious with me for even bringing it up, and only now--eight years and many, many stages later--will she occasionally admit there's a problem (most of the time she doesn't even realize it).  Our PCP is very competent, and she quickly failed trials of Aricept and Namenda --the two meds for early disease---because of intolerable side effects.  We never did formal neuropsych testing or saw a neurologist, didn't see the point.  She has many other health conditions too that were more critical at the time.  She did have imaging of her brain and lab  tests (prompted by cancer, not the dementia) that ruled out other causes.

Hopefully you have power of attorney (durable and healthcare) for your parents, if not, that's something to start with, with a certified elder law attorney (look at nelf.org).   Find out how their finances stand, too.  Think long and hard about whether your dad should have the powers of attorney, or you.  If the doc doesn't have HIPPA clearance to talk to you, you can still--and should---tell him/her in detail what you are seeing, your observations are by far the most important.  You should convey this information in writing before the appointment and warn them that she won't be cooperative.  Many will say to tell her it's a visit required now by Medicare or she'll lose her insurance.

Good luck.  I'm sure your dad needs your support.  Trying to do this long distance is going to be even more difficult.

AConcernedSon

This is a very very common story. I didn't know how common until I went through it all myself and joined groups like this and realized it! So good news, you're doing the right things. 

In my case, my father trusted his doctor more than us. So I talked with his PCP (she had NEVER even picked up on it--so focused on physical issues and updating prescriptions etc) and scheduled a visit and she then recommended he see a neurologist, which he agreed to. We got as far as him having an MRI and a shorter test to confirm, but when the neurologist suggested three-hour neuro test on a six month waiting list, we just did what a lot of people do. We gave up pursuing a formal diagnosis. I personally wish we had one. For Dad's sake and for my own down the road. But we just didn't want to put him through a battery of tests to find out the specific type. 

jfkoc

I think the most successful approach is when the appointment is not about the loved ones health problems. 

The appointment can be for insurance or medicare annual or they can just be company for someone else having the appointment.

A treat like lunch or ice cream following the appointment can wook well too.

Klovesotters

My mother has moderate dementia, as diagnosed by a Montreal test given by a clinical social worker. Her doctor does not seem all that interested in finding out what type of dementia, but other people I know are telling me that it is very important to find out. Why is it important and how do we go about that if her PCP won't order the tests? Which tests are less invasive/difficult to administer?

The reason I was given was that ALZ is fatal, dementia is not.

towhee

Hello Klovesotters, welcome to the forums. First, you will get more responses if you have your own post. Right now you are buried at the bottom of someone elses. Click on the green add topic button at the top of the page.

The reasons usually given for needing to know type of dementia are which medications are suitable and to know what to expect going forward. There are medications which work quite well with some dementias but have bad side effects in others. However, some people feel that putting their LOs thru additional testing is not worth it, as you can get a good idea of the type by a persons behavior over time. One of the things doctors look at is age. If a person is in their late 80's or 90s when they start showing symptoms doctors usually don't do as many tests.

It is often suggested that caregivers read the book The 36 Hour Day. It will answer some of your questions.

Dementia vs Alzheimer- Okay- Imagine a great big umbrella called Dementia. The umbrella is sheltering all the different types of dementia. Under that umbrella is Alzheimers disease/dementia, vascular dementia, Lewy body dementia, Fronto temporal dementia/FTD, and a whole slew of other types of dementia. All are fatal eventually.

There are conditions that have the same symptoms as dementia but are not, and are not fatal. Some of these are thyroid issues, low salt, infection, dehydration, hospital delirium, depression, etc. The doctor absolutely has to rule these out before giving a diagnosis of dementia.

If you are not satisfied with your PCP, for a diagnosis you would normally go to a neurologist or possibly geriatric psychiatrist. How directly you can do this depends on your insurance.

Best Wishes