An Anomaly?

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.

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.

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.

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.

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.

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.