Insights From Our Medication Journey

Gary's nights and days were completely reversed before he was first diagnosed. We got him turned around in a stay at a geriatric psych ward. Without the intervention of that hospital stay, it was impossible to keep him awake during the day. We also had to admit him for his safety because he was wandering alone around the house at night when weren't able to monitor his activities, and it was dangerous for him. He had no memory of what he would do at night and we would find things rearranged, tipped over and broken. It was quite difficult.  

During his first of two geri-psych admissions, they tried night/drowsy medications including Trazodone and Clonazepam, which are still in his regimen in his late stage. Trazodone was started in low doses and has worked well for him. It is now our anti-anxiety go-to medication between 25 and 50mg. Exelon patch (cholinesterase inhibitor) and Namenda, moving up to Namenda XR (designed for alzheimers) have helped Gary still have hours of good cognition.  Of course, over time, many adjustments have been made, but that initial stay at least put us on a survival track without me personally having to struggle through the experimentation in an uncontrolled environment.

Antipsychotics have all had horrible short or long-term side effects. Quetapine is generic for Seroquel.  It was tried first, and he didn't react well at all--it caused double hallucinations compared to his baseline. Risperdal was one of the initial medications that stuck, which is now on his allergy list after it ultimately locked him up 6 months after it was started. When Risperdal was stopped, Zyprexa was started in his second geri-psych stay, and that worked for nearly a year until it made him too rigid.  

One of the challenges of those geri-psych stays was getting the hospital psychiatrist to keep any medications that would cause drowsiness held for only night dosing.  You would think that since one of the main issues that brought us to admit him was nighttime sleeplessness, and his primary physician was saying no naps after 1 p.m., the psychiatrist would pick up on the fact that a drowsy medication shouldn't be given at 2 p.m., but not so.  You even have to advocate for common sense.

Lorazepam is one of the medications that caused my husband to require hospitalization at the same time the Risperdal was discontinued. Since then, I have asked everyone to carefully consider any medication changes and definitely suggest that any antipsychotic or medication that affects receptors in the brain be steered away from. Our geriatric dementia primary care doctor, who we were very fortunate to find in 2012 through his geri-psych stay, was very careful to use only medications that were less likely to cause any changes to the already limited functioning in Gary's brain. Preserve what was/is still working. Though the receptors in the brain may be interrupted at times, they are still functioning, which is why LBD has such extreme ups and downs.

Pain medications can also cause unexpected reactions. After a compression at T11 then a fractured left hip and pelvis, our pain med progression has been: Tylenol, Hydrocodone 5/325 and 10/325, liquid morphine plus MS Contin (time release morphine), the step up to 25mcg Fentanyl patch, now Fentanyl subcutaneous starting at 37.5mcg...now up to 75mcg plus up to 120mcg additional boluses each hour. Vicodin was an agitator and hallucinogen for Gary. He can't take any ibuprofen related meds because he is on blood thinners already for history of DVT/Embolism. Naproxen often causes confusion in the elderly so we have also steered clear of that.

When initially hospitalized, Gary could still do things around the house at that point, but the sun-downing at night with all the wandering and confusion was such an alter ego we needed the intervention. It became quite unmanageable. Before his stay I had no idea there were such units to assist. It did ultimately make a huge difference in giving us both back a better quality of life that was much more functional for at least a short time until the two catastrophic falls occurred.

Advice to anyone who thinks they may be dealing with LBD--Caution with ANY antipsychotic such as Seroquel, Zyprexa, Risperdal and especially not Haldol. All can cause deadly side effects and must be monitored closely. Our ultimate best solution ended up being no antipsychotics and increasing to Namenda XR instead of twice/day Namenda. The hallucinations are still mostly under control with minimal breakthroughs, and we still have the cognitive benefits. This route was the result of recommendations from Gary's Cleveland Clinic Neurologist and his geriatric internal medicine doctor that both specialize in dementias.