Getting mom with dementia to a doctor; what other options might we have?

ReallyScaredSon

My 69-year old mom has been increasingly showing signs of dementia for the last decade. She never saw a doctor for this (did not even discuss it with her PCP), until the situation exploded: about 18 months ago, she was basically having psychotic episodes in the middle of the night. It got so bad, she ended up in the hospital (had to call emergency services). This hospital stay was the first time her dementia was formally recorded by a medical professional. There she started on a regimen of meds that seem to have abated the psychotic episodes.

After the hospital, she went to a memory care facility. There was an incident (long story), another hospitalization, and moved to a different MC facility. However, she was miserable there, which made my dad miserable, and he brought her back home early this year.

They don't have any kind of helper (my mom doesn't think she needs one, not to mention the logistical problems, as they live in a fairly remote rural area). Still, the only doctor she will see is her PCP. He is aware of her dementia, but did not prescribe any of her neurological/psychiatric meds (those were prescribed by the specialists who saw her at the different hospital stays). He is afraid to make changes to these meds since he did not prescribe them and is not a neurologist/psychiatric specialist.

My mom suffers extreme "white coat syndrome". Getting her to agree to going to any doctor is basically impossible. Even when she sees her PCP, the agitation ramps up quickly and the exam is aborted before completion.

My dad can't make any calls or do any research on her behalf. He doesn't feel comfortable leaving her alone for any amount of time. Also, she gets agitated if he's on the phone for more than a few minutes, or uses the computer. I'm not on a POA, so I'm extremely limited in what I can do for them medically.

Her sister (my aunt) comes to visit about once a week for a few hours so my dad gets a short break. But they don't otherwise have any real reliable or regular help available. (I live about three hours away, and work full-time and have my own family).

The problem is her situation is getting worse. And she's starting to resist taking her meds. I am absolutely certain if she stops taking her meds, the psychotic episodes will return (along with whatever other risks there are from stopping these meds).

It's clear that, at a minimum, she needs a neurological and/or psychiatric specialist to manager her meds.

I see this as a bunch of chicken-and-egg problems... I'm trying to think of what they can do, but all I see are roadblocks. One option is to basically repeat what happened last year, and wait until things get so bad, it results in a hospital stay. But there must be a better option!

I'm just looking for any ideas, thoughts, suggestions... anything.

terei

Sometimes you just have to wait for a crisis so someone can take control of the situation in a hospital setting + on to a geriatric psych ward where there get get her stabilized. Hopefully this happens before your father has his own crisis due to stress.

Joannemv

Hello,
Something you might want to bring up to your father is moving to an assisted living facility together. There are a number of married couples in the community my sister-in-law lives in.

Joannemv

Unfortunately, I am having the same problem with my sister-in=law. Her cognition isn't too bad yet, but the dangerous delusions keep coming back, even with medication. She is on her third hospital stay to try adjusting meds. If she doesn't get relief we'll have to put her in MC for her own safety. She's only 62. It's heartbreaking.

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jfkoc

I do not read where a diagnosis was made following protocol. This must be done to rule out treatable causes for the dementia.

Mlewis501

I too had this problem. The only way I got my mom to a PCP was when she hurt her toe and obsessed over the bandaids she insisted we put on her toe. Medication (aricept) was started at that appointment for dementia. It did not help at all. She had a very bad day followed by a worse night. By the next morning I called 911 and had her taken to the emergency room. I was very lucky and thankful that the doctor there saw her mental condition, had her transferred to geriatric psych hospital and from there we were told she had to go in to memory care. This took the pressure and guilt off of my dad and he finally agreed to MC. There is nothing easy about dealing with this disease!

SDianeL

Will the PCP do a referral to a Neuro Psychologist and Neurologist? She needs to be evaluated. Maybe they can give her something to calm her enough to visit the specialists? Can she sign a DPOA? Maybe ask your Dad if you could get one?

ReallyScaredSon

https://alzconnected.org/discussion/comment/175298#Comment_175298

I've thought about that myself, but I'm hesitant to suggest it. Mostly I'm afraid of my dad dismissing it out of hand. But even I have mixed feelings about it: even if my dad was living with her full-time, I'm afraid moving out of their house would really be hard on my mom; what if it exasperated an already-bad situation? And I don't know what they'd do with their dog (we aren't in a position to take her).

https://alzconnected.org/discussion/comment/175501#Comment_175501

"Can your Dad read up on the disease, maybe these Forums? He will need to learn that many emotions from a PWD can't be addressed with logic."

That cuts to the core of the problem, in my opinion. I've sent my dad all kinds of information, including links to posts I've made on this forum. I got him to attend a couple support group meetings. But ultimately, he doesn't have time for any of it. At this point, I don't think he ever has a moment to himself. He absolutely can't get "caught" reading about Alzheimer's or dementia, as that would definitely send my mom into a rage.

We've talked about hiding the meds in food/drink. I don't think that's really possible. One, we're not sure which meds can safely be administered that way. Even if we had that knowledge, how would he go about doing it without getting caught? And, even if the food/drink was prepared with the meds, what if she changed her mind about eating it?

"Can you and that doctor identify a geripsych hospital near them and when she melts down at a doctor's visit office have her taken straight there..."

A similar scenario actually played out last year. And I think it's a good idea. But what makes this even harder is where they are located: her PCP is in the small town closer to them. All the specialists are in a bigger city about 35-40 minutes away. Her small town PCP's medical group appears to be poorly connected in terms of making referrals. In fact, her PCP has only made one referral: my mom did see that geriatric psychologist a few times about a year ago. But now she refuses to see her, and even the mention of that doctor's name will send her into a fit (despite her failing memory/dementia, bad memories continue to be formed). I've talked to a lot of different people, and it appears this particular geripsych may be the only one in their area (at least, she is the most recommended one).

Over the last decade, for many years (well before I was aware of the dementia), my mom was regularly changing doctors. Both my parents, for a long time now, seem to have a profound cynicism when it comes to doctors in general. They will look for any reason to dismiss a doctor: "she were 10 minutes late to the appointment... the nurse never called me back... your mom doesn't like the sound of her voice... he doesn't know what he's talking about... he's a young hotshot, thinks he knows everything, just like so-and-so I used to work with... he asked what I thought, can you believe that..."

https://alzconnected.org/discussion/comment/175508#Comment_175508

In early 2022, when this came to a head, and she was admitted to the hospital, they did all the testing (MRI and blood tests to rule out treatable causes). That's when she was seeing the geripsych I mentioned above. That doctor would not commit to a specific diagnosis. She claimed it didn't really make a difference, as they ruled out everything treatable, so all that can be done is to medicate (mostly for the psychosis and depression) and manage the situation.

For what it's worth, that doctor said, quite literally, that my mom's personality type is the worst for dementia. My mom has a history of obsessive-compulsive disorder: she was treated with meds when she was younger, then self-managed for many years. But it looks to me like the OCD has come back as the dementia has progressed. And that doctor said specifically, people with OCD/anxious personalities suffer dementia the worst, because they can perceive that something is wrong, but the dementia makes it increasingly hard to understand what's happening and how to manage it. Basically, it's a double-whammy.

loveskitties

You are right that every option has the possibility of failure, but if nothing is tried both your parents are at risk.

Is there an alternate on the POA? you? If so you might be able to use the clause "main person is unable or unwilling" to insert yourself into the equation. Not best solution, but another possibility.

Even under the HIPPA rules and those of POA, you can contact her PCP and relate the details of the situation (a letter followed by a call). You can communicate to them, it is just that they cannot share info back.

As to getting her to the PCP, is it possible for your father to "need" and appointment, and have her accompany him? If you have let the PCP know in advance the situation perhaps he/she can do an intervention while they are there.

Waiting for a crisis is a disaster for all. My mother was my dad's sole caregiver (her choice) and every time the family would recommend facility care for dad, she would say we are not there yet. Well he ended up with a 10 day hospital stay for a heart issue and needed to immediately go to a MC facility on discharge. I spent the better part of 2 days trying to find an acceptable facility which had availability. Fortunately they could afford self pay...otherwise I don't know what we would have done. Once the hospital says you are ready for discharge, insurance and Medicare put up the stop sign on their paying for further days in hospital.

Hope that you and your father can come to some solution for the best care for all.

ReallyScaredSon

"You are right that every option has the possibility of failure, but if nothing is tried both your parents are at risk."

I fully agree, but this is a "you can lead a horse to water" situation. There's very little I can do, and I keep showing my dad "the water" but he won't "drink". Before this came to a head last year, my dad and I were able to talk a little more, and I kept saying that plans needed to be made, or he'd be too busy taking care of her to get stuff done. And he always agreed, I lost count of how many times he said I was right, he needed to have arrangements made.

"Is there an alternate on the POA? you? If so you might be able to use the clause "main person is unable or unwilling" to insert yourself into the equation. Not best solution, but another possibility.

Even under the HIPPA rules and those of POA, you can contact her PCP and relate the details of the situation (a letter followed by a call). You can communicate to them, it is just that they cannot share info back."

I tried that with both her current and previous PCP. It's impossible to speak directly to the doctor, and only if you get a really nice person answering the phones can you even speak with the doctor's nurse. Even then, I got stonewalled. I said, I'm not asking for information, I just want to make the doctor aware of some things. I called, left messages, spoke directly with nurses; I even typed up a summary letter and faxed it to the doctors. The previous PCP completely ignored all the info I gave her. The current PCP's nurse told me plainly, she can't really do anything with the information I was giving her. (I later found out, doctors take this perspective because, besides HIPPA, there are unscrupulous people out there who want to have a family member declared unfit mentally for nefarious purposes.)

And that's yet another problem with keeping this off any formal medical records until it boils over: you've got a patient with no history of dementia or mental illness, now all the sudden the son (who's never been previously involved in any of this) shows up with all these stories of dementia. Frustrating, but I can see how a doctor might be skeptical.

That said, her PCP is now aware of the situation (mostly due to the ER calls, hospital stays, and time in MC facility).

SusanB-dil

Would she go with you if she thought she was going to the doctor for you, or dad?

ReallyScaredSon

https://alzconnected.org/discussion/comment/176872#Comment_176872

Nope. Both my parents are painfully private, particularly with healthcare matters. I only found out about this a few years ago (late 2019), because her symptoms were too obvious to explain away. But I found out she had been showing signs for nearly a decade prior, and I was in the dark the whole time.