An Anomaly?
With DH's recent "miraculous" recovery, his PCP now thinks DH may not be suffering from LBD. He thinks DH's psychotic episodes may have been caused by some other unknown disease or Hashimoto's Disease, but DH has been taking thyroid medication for over 15 yrs. He mentioned some test to confirm the theory, but I can't recall the name of the test. He also said that because DH has been increasingly becoming more cognitive and able to provide own ADLs that he could presumably "graduate" to assisted living instead of being locked up in an MCF.
This has definitely put a wrench into my belief/thinking. I don't know what to believe.
Comments
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Dio that is quite the mystery. I can only imagine --actually I can't imagine what it would be like to get my partner back. What conflicted feelings you must have. I wish there were a way you could get an outside review. I also can't imagine what test he might be referencing that would be definitive.
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Does he have a history of major depression? Major depression is a reversible dementia mimic.
Iris
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No he doesn't. While he's had some anxiety, he's never suffered any type of depression. He tried 31 sessions of cognitive behavioral treatment (CBT) which did nothing for him. In fact, I think it made him worse.
I feel like we're back to square one. There's a member here who posted that her DH enjoyed a three year level off back to normal until a sudden decline. That's the unpredictability of LBD. Of course, the leveling off is great for my DH. But I absolutely cannot take him back home. The Dr. also suggested moving him to AL instead of MCF. But going that route, there are simply too many what if's. My head is about to explode…I don't know what to believe.
It seems the doctor has taken to advocate the possibility of taking DH out of memory care, which I'm not inclined to do. Not only is it disruptive, but it will create a huge hurdle if I have to return him to MCF. He's doing well in the current MCF and it is because of the care provided that he's doing so well.
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A consistent and supportive environment can be very beneficial. Perhaps this is contributing to what you see.
Iris
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Iris, I think so, too. But can the PCP force me to take DH out of MCF?
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Dio no, to my mind the pcp doesn't really have a say here and you can find someone else. Is he the facility's doc or someone you've seen privately? Can you ask more about the test?
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On what basis is DH becoming "more cognitive"? I would like to see documented "more cognitive" over a period of time, such as at least 60 days. Have you observed an increase of cognition? Personally, I would be reluctant to make changes at this point. Perhaps he could spend his days at the AL activities to see how he handles less scaffolding.
Iris
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He's not the facility's doctor and not a neurologist, but a privately paid internal medicine who travels to patients' locations. He sees about half of the 43 residents at the facility. I employed him about a year ago when DH was having his peak combative period so that I didn't have to take DH out of the facility for annual checkups with his regular PCP.
After doing a little digging, I think the doc is referring to Hashimoto encephalopathy and treatment for it involves injections of high doses of steroids…which, hellooOH, very undesirable IMHO. Plus, there's no definitive test for it, except putting it together using family history, blood tests, blah, blah, blah. I would think the doctors at Stanford would have caught this during DH's 2-week stay. His TST or TSH(?) levels have been in normal range as he takes synthroid daily for about 15+ yrs now.
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Whoa….I see possible red flags.
What was the protocol of the initial diagnosis?
Who made the diagnosis?
No neurologist?
I would do no testing or moving without a lot more info.
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DH has shown steady improvement over the past 9 months after taking Depakote, almost 180 degree turnaround which is why I asked if his case is an anomaly. Improvements include:
- Long-term and short-term memory in tact, except he doesn't remember how he got there nor having punched/kicked staff and intimidating his roommate. He just remembers being angry.
- Reads the local newspaper, watches tv, even asked for his favorite movies and can operate a portable DVD/Blu ray player without instructions.
- Engages in sound conversations.
- Urinary incontinence almost gone with occasional accidents.
- Relishes being clean, shaven, and enjoys regular haircuts. (He used to walk around with his face half shaven because he wouldn't let them finish shaving him and wouldn't allow hairdresser to finish haircut, and it took 3 staff to shower him.)
- No longer stays in bed all day with eyes wide open; he's now even volunteering to help setup and clear activities.
- Does sit-ups and push-ups in his room, walks around the complex to exercise.
It truly is nothing short of a miracle. When I talked to the MCF director, he believes that it's the structured routine, consistent programs and regular medications that all contribute to these results. In fact, it was the MCF director who relentlessly pursued adding the Depakote because he has seen the positive results for LBD patients. Even before placement, during consultation, he had already suggested that we add this medication. But the neurologist didn't want to make too many medication changes at that time, since we were already adjusting here and there due to DH's night terrors.
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So he's going on opinion only? Does he have all of the old records?
I'm glad your DH is doing well, that's for sure. But I would be cautious about changes and I sure wouldn't do steroids.
Dio I know you haven't visited much and have had good reasons for this. Maybe this is a good time to go see for yourself? Or do you think that would upset the apple cart too? Sounds to me like you need additional input and maybe from someone besides this doc.
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The PCP has no history on DH at all and is going by his observations since November last year. He's seen DH 4x and noted the improvements on his after visit summary reports. His last two reports were definitely a huge contrast to the first 2 visits. In our conversation, he didn't seem to care much about the past and said he's only focused on the present…a bit disturbing to me but I wasn't going to argue right there and then. I do acknowledge that his concern for my DH is genuine as a healthcare provider. And under normal circumstances, his view on "graduating" to assisted living instead of being "locked up" in memory care made sense. I just wish he wasn't so presumptuous and should get all the facts first before spewing out stuff without regards to the complete picture. He didn't know about the 2-week stay at Stanford and even acknowledged that Stanford should/would have covered the thyroid test—and yes they did, just not the exact Hashimoto encephalopathy test because it was deemed unnecessary at the time due to his TSH & TST readings.
Even if I don't visit, DH gets visits from my family and friends at least once a month, sometimes more. They do report on how well DH is doing and are amazed by the change/improvement, so I have no doubt that DH is doing well. In fact two friends just visited yesterday and had a great two-hour lunch with DH. He's also requested for more DVDs. Well, we have no shortage of them here. Of course, my demon is the guilt I carry for having placed him. Our friend who helped move him into the MCF comforted me by telling me that I had made all the right decisions given what I was dealing with. He also knew what it took to move DH and isn't too keen on moving him in and then out of AL when Mr. Hyde shows up again. So he's completely not in agreement with the PCP. He's witnessed what the current MCF has done for DH and gives them much credit for DH's improved care and well-being.
People who haven't walked our path simply can't understand the guilt a caregiver bears when placing a LO.
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I don't recall seeing the details or timeline of this this magical recovery, but I guess I would want a neurology consult before deciding on any moves. Seems like the unusual time where an MRI or lumbar puncture or similar is totally warranted if he hasn't had them yet. Whatever can confirm whether or not he has LBD. If he can't tolerate such a procedure that to me may indicate he is in the right place in memory care. If he was cognitive enough to recognize his own deficits and participate in his care that would be another thing. People who cannot do that often require the structures and routine that comes with memory care. But short of that I can't imagine upsetting this delicate balance you found on the hunch of a doctor who possibly hasn't actually done a thorough diagnosis. Having a Person With Dementia settled into memory care and thriving there is not something I would walk away from without a darn good reason. I guess you need to establish whether he is a PWD, as I said I don't know the whole story but my reaction is if you found something that works don't mess with it. You know from these forums how rare it is to have good solutions and equilibrium in the dementia journey.
Is he unhappy being in the memory care? What would be the benefits of moving to AL? Does he wish to get outside on his own, does he realize he is not currently independent?
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MN Chickadee, DH is under the care of a renowned neurologist at Stanford. DH's diagnosis has been a long and winding road, from major depressive disorder with severe psychosis to frontotemporal dementia to LBD to Atypical Alzheimer's Disease, then finally back to probable LBD. Don't want to list all the tests that have been done, but major ones included 4 brain MRIs, 2 PetScans and spinal tap/lumbar puncture. Now that he's better, he is more vocal about asking when he can leave, although he tells his friends he's happy there. It was a long, hard road getting him into the current MCF. He's only better since after adding Depakote. Still on seroquel/quetiapine and donepecil/Aricept.
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Astounding turnaround. My mother was prescribed Depakote for circadian rhythm ultra rapid cycling bipolar disorder, literally every other day she was extremely low, full of dread, confused and unwilling to leave her bedroom; everything was seemingly impossible to her. The next day she was the opposite; making crazy plans, demanding personality, behaving over the top with exuberance feeling nothing was impossible. She was like a rag doll being pulled in opposite directions. She bounced from regret to remorse. She was small in weight and while extreme behaving, not a threat to physically harming herself or others.
It’s wonderful that the drug has helped your husband. My mom wasn’t violent and hated taking any kind of medicine, so she stopped taking it early on, and that was it, as my dad (her POA and both being elderly) would not consider committing her, nor did he think it okay to deceive her into taking it (her doctor prescribed it in liquid form to be easily hidden in a beverage. She had been given the diagnosis of dementia by her medical doctor as she was also very, very much into faith based healing and would never be considered to be in her right mind by the medical profession. She did not have memory loss like my husband with Alzheimer’s or delusions (until actively dying). She did suffer confusion and seemed to have a slower cognition and no affect on her low functioning days. She was this way for almost a decade.
I hope you will rise above any guilt feelings, because of your actions he’s doing well, in a smaller environment, on a scheduled routine, receiving helpful meds, and he’s feeling and behaving so much better! You helped him by addressing his problem, not ignoring the situation. He’s not cured, but managed, and being well cared for. As hard as the past was on you, it had to be hell on him, too. So, yes, understandably it’s okay, probably preferable to keep his present regime in place. Go slow with any changes, and allow yourself time to heal and maybe trust that he’s “safe” again. PTSD is real.
Wishing you both peace.3 -
Nowhere, thanks for sharing your plight and your encouraging words!
I am more than livid with this new PCP!! I found out yesterday via DH's friends who visited that this nincompoop Dr actually told DH that he doesn't belong in MC, that assisted living or a less restrictive care home would be more suitable. WTF?! Now DH is all excited about moving to AL. Why would a medical professional tell a dementia patient this without having a consultation with patient's family first? This is absolutely irresponsible and inappropriate! He supposedly offered to write a letter on this matter, but to whom will the letter be addressed?? First, this Dr never bothered to get all of DH's medical history since onset of this disease, what type of drs DH has seen, what tests were done, what meds have been taken/tried, or what journey we've gone through for DH to end up in MC. He's only seeing the newly improved version. I have not met this Dr and only spoke with him a few days ago when he spewed out all that stuff about DH not having LBD and recommending this thyroid test. I tried to keep an open mind and listened to what he had to say. But telling my DH that he doesn't belong in MC is just unacceptable. He didn't even know DH had stayed in Stanford for 2 weeks and all the tests that were done there and in the months that followed. Anyhow, the harm has been done. Can't take back the spoken words. I've been so careful about limiting visitors only to trustworthy ones so that certain clowns wouldn't say the wrong things to DH or hint at DH not needing to be in MC (yes, there's a friend who didn't think I should place DH). Damn it! I will address this with the Dr, but I definitely need to cool down first. Thanks for letting me vent here.
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You are correct, it's completely inappropriate. I had a similar thing happen in a psych hospital, had the doctor removed from the case and made a complaint to the state licensing board. I hope there's a path that you can pursue.
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Oh wow. I would be ceasing allowing this doctor to see your DH, that is wildly inappropriate. I'd use fiblets with your DH and any friends who visit who have some armchair quarterback comments on moving him without the full picture. We'll see, there's wait list in AL, maybe in a few months etc.
Regarding your follow up comment on his diagnosis process, it sounds like it was thorough and as though the neurologist has reason to believe his dementia diagnosis is correct. I'm unclear on why the new physician thinks that because he has found meds that keep him stable that he should move. Seems so risky to me. Go with your gut. Waiting and seeing is a fine approach. Give it time, make sure this is the new normal before making any massive changes.
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Very odd and unprofessional. What on earth? I’m beyond speechless at this physician’s behavior. Unless your husband has had repeat neuropsychological testing showing resolution of dementia, I can’t understand this opinion. As my teenage son says, “I can’t roll my eyes far enough back in my head”. I’m incredibly sorry you are dealing with this person and agree with documenting in writing that he is no longer to be involved in your husband’s care.
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Dio: would it be helpful perhaps to have the input of the Stanford neurologist? Is a follow-up evaluation a possibility? Would it help you or your family to make decisions?
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We have an appointment with his Stanford neurologist in early December. I'll hear what he has to say before making any hasty decisions. I'm just more angry that this irresponsible PCP told these things to DH without talking to his family, i.e. me. He is not even a neurologist. I've written to alert the MCF that this happened. At this point, I am only posing it as a question that perhaps this happened and that if in fact it did happen, how angry I am. I asked for clarification of this Dr's role in relation to the MCF. They highly recommended him in the first place. I'm really inclined to terminate the Dr's service, but I want to get to all the facts first. Thanks, everyone!
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Talk to the Dr at Stanford. He/she is still the neurologist of record!
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🤦♀️ Talk about irresponsibility and negligence. This new PCP has much to learn. I hope you can talk with him before/if he visits your husband again. This could be explosive to your husband’s new found, and well deserved calm. I hope your husband forgets, but sadly, information triggering emotion sticks around longer.
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Precisely! I have spoken to the MCF's director and he's quite appalled as well. With DH's violent history, moving him to an AL would be asinine. I just hope this mess can be cleaned up without more drama. I do plan to speak with the doctor to give him a chance to explain himself. However, I don't have high hopes and definitely planning to terminate his service.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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