So which end is up?

PattiRN2

Yesterday, my DH and I saw the neurologist in response to recent deepening confusion. But at the appt, he was on track, MMSE test higher than last year and he sounded much like his old self. I was shocked. From there the conversation with neurologist was light and overly optimistic. My DH said he exercised regularly, cooked and socialized with friends having no issues. It’s simply not true but the conversation still flowed between them in a jovial way.
Yes, the neurologist acknowledged he was having a good day and I get that. I know I should have been happy, but nothing seemed real at that moment.

One week earlier at family doc, my DH didn’t know the month, season, difficulty understanding conversation. Family doc was shocked by significant decline in only 3 months from last visit. Said I see what you are saying.

This feels like having an intermittent car issue taking it to a mechanic who says everything checks out and you know the problem is there. So frustrating.

I wish we had not gone. The whole thing felt bizarre. My husband now thinks he’s fine and I don’t know which end is up.

M1

That's showtiming Patti. Is there any reason to keep going to the neurologist? You may do better with a geriatric psychiatrist for behavioral issues and you can always ask for a referral.

easy23

I took my husband to a neurologist 4 years ago and he evaluated him as having a non-progressing MCI. The neurologist moved out of town and recommended my DH see a PCP to manage his symptoms. Fast-forward to now - my DH has stage 6 FTD dementia and has to be placed in a memory care facility. So much for my faith in a neurologist!

jsps139_

Hi Patti. My DH went to a neurologist twice and then decided to just let his PCP handle his care. And, for years, he acted just like you are describing only with his PCP. Just take it one day at a time - the showtiming will end and everyone will be aware. It sounds like your husband’s PCP already recognized his confusion, so maybe just see the PCP. I know it is extremely frustrating when you deal with all the confusion and then they act perfectly normal with other people. Hopefully, you’ll feel a little better knowing that most of us have gone through the same thing you are describing.

harshedbuzz

That does sound like showtiming to my ear. It can be crazy-making.

Dad could showtime like there was an Oscar in it for him. The last time we took him to the geripsych, about 6 months before he died, he was like someone we hadn't seen in years. Not just conversational, but dropping punchlines in Yiddish which is quite the feat for an Irish Catholic. He also took a MMSE on which he scored right at the border of MCI; the man could do serial subtraction faster than my mom. The doctor commented on how well he'd done and we had to listen to dad about being "off the charts" all the down the hall, in the elevator and out to the valet stand. I turned my back to turn in my ticket and dad toddled away from mom and climbed into some random little old lady's car with her— ugh, the look on the poor woman's face. Off the charts indeed.

Dad did the same thing in terms of being an inaccurate reporter. He would talk about playing golf several times a week, swimming daily and socializing which was his custom before dementia in the same way some PWD insist they've showered when they haven't in weeks. Or maybe it was related to not being entirely oriented to time (although he generally knew the season and president) and sometimes mentally occupied a different era of his life when he did do those things. Where I could, I would communicate via the patient portal ahead of time so the doctor knew what was really going on. If I couldn't do that, I would sit in the doctor's sightline and communicate non-verbally on any answer he (and my mom who was hell-bent on preserving his dignity) gave. The doctors we saw knew to look for this.

Once when we were seeking a dosage increase on dad's Seroquel, we weren't successful during the office visit because dad was showtiming so hard given how well he seemed at the appointment. I think the geripsych thought I wanted to sedate him for our convenience. When we got back to the house, dad reverted to his regular baseline of aggression and threats. I used the video function on my phone to make a short clip and emailed that to the doctor. I got the increase he needed to remain safely at home.

HB

Quilting brings calm

I just dropped my mom’s NP in neurology for the same reason. We’ve been going there about 3 years. She keeps telling us that mom’s MMSE score is improving and that she is almost normal. She’s not almost normal. She is declining from stage 4 into stage 5. So the PCP is going to prescribe the donepizel that was being prescribed by the NP. Mom has more than enough doctor appointments without useless ones.

PattiRN2

Wow! I can’t thank all of you enough for sharing your stories about show timing. I had never heard of that but it perfectly describes what happened. More than that, I feel validated by you and for having feelings of frustration and confusion. It’s a complex situation when the person you love shows improvement and yet it doesn’t feel like good news at all. Instead it brought pain and doubt. I wondered if he was faking it and I was creating learned helplessness in him. And, exhausting myself trying to do everything for both of us. I now understand what was happening, my own reaction and his fears. Thank you thank you.

housefinch

My stepdad showtimed incredibly well and my mom believed it because she found it too painful to accept he was deteriorating. A medical situation resulted in him being sent to memory care/nursing care. He has been essentially bedridden and intermittently hallucinating or asleep for 3 months. In 1 week she thinks he went from being able to socialize to being stage 6. In reality, she was killing herself scaffolding him and he exhausted himself show timing for her.

fmb

@housefinch wrote:

In 1 week she thinks he went from being able to socialize to being stage 6. In reality, she was killing herself scaffolding him and he exhausted himself show timing for her.

This is exactly what was happening with my DH. I was shocked at his Moderately Severe ALZ diagnosis (= late Stage 5 per the DBAT) in October 2023 right before he was placed in the first care facility. I hadn't known what scaffolding was, let alone the amount I was doing to keep things going. I was literally killing myself and ruining my health. He showtimed for everyone, especially if they were a young, attractive female. Our PCP didn't pick up on it even though I was doing nearly all the talking at his appointments. It wasn't until a geriatric psychologist was called in while he was in rehab after hospitalization for A-fib and a fall that he received that definitive ALZ diagnosis. He is now in mid to late Stage 7.

Interestingly enough, he had seen a neurologist in early July 2023 after his stroke. He was far more interested in whether or not DH had sleep apnea. Buried deep in his notes (that I didn't have online access to for many months) was a diagnosis of Dementia-Alzheimer's type. The neurologist didn't mention it at all in his discussion with us. Needless to say, we never saw the neurologist again.

mathreader

I'll let you know what happens with my DH, but as much as we like the neurologist, we just can't get a definitive answer from him. We are going back to the neuropsychologist in September and hope that the decline he is having shows enough to do SOMETHING for him. This disease is so tiring for the caregiver. I went to my doctor today, and he is great, but he thinks I should be looking into placing my DH in an assisted living home because I am so stressed. I just wish there was a way to get more support and more help somehow.

SDianeL

I kept a list of my DH behaviors and sent them to all his doctors online monthly. I took a copy with us to his appointments and gave them a copy. That helped counter the showtiming. The Neurologist actually changed the diagnosis and added Alzheimer’s-Posterior Cortical Atrophy to his VD diagnosis after reading the list of behaviors including eye problems and looking at his latest CT Scan.