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. 

June 5 - Beard Trim

Gary's still on his game sometimes...I started to trim his beard and mustache tonight, and I said, "I hope I'm trimming it the way you like it." He replies, "That's why I've got my eyes closed." Turned out very good though, don't you think? He did approve when I was done, though he also commented on how thin his hair is now--but I was also so pleased he was aware enough to make that observation! It's the small stuff that counts in life!

June 4 - Hospice, Decline and Medication Reflections

Hospice is so very helpful. After a double infection in November, 2013, our Gary's been on Hospice in decline since the first week of December. As of this point, he's down at least 75 pounds, so almost 1/2 his weight from a pretty fit 186 at 6' tall. He is fully bedridden and 100% dependent. He has lost all remaining independent abilities between December and January. It's been so sad. I'm totally with you on the second guessing. I've reviewed this entire movie in my head since Feb of 2012 when I first caught him hallucinating, several times. There are no easy choices. At some point it just becomes the lesser of all the evils presented.

All meds have continued because we are fighting for comfort, including cognitive comfort. If we only have 8 hours of lucidity total a week, that is enough to continue. Gary is still on Coumadin (paid for by me) to prevent clotting because he has a history of clotting with DVT and embolism and that would cause unnecessary suffering, though hospice is covering monitoring his INR levels. He has a nebulizer with albuterol for respiratory comfort due to aspiration issues. He is still on Trazodone, Exelon 13.3mg patch, Namenda XR, Clonazepam, and then Fentanyl subcutaneous pump currently set at 75mcg/hour with 30mcg bolus doses available every 15 minutes, all of which are covered by hospice. I don't accept less than full comfort in all areas, as his advocate, and all these medications are justifiable for comfort. I don't allow doctors to push me in a corner on meds. We have been through too much, Gary has suffered from it and I have the proof to show the hospice doctors if they question me.

Neurological pain is one of his issues because of the changes to so many body functions. I can't imagine an advanced LBD patient not being in pain with all the systems that are affected. They just can't express it and it comes out as agitation, anxiety, and other symptoms. A lot of symptoms resolved once we got pain managed better.

Gary is fighting demons of anoxic brain damage layered over Lewy along with the infections, so continuing the meds I've mentioned is helping to keep him cooperative and less anxious. If something like kidney failure or another infection comes along, I'm not sure we'll be giving any further treatment or preventative measures to prolong life.

It's June 1 and Gary's still here!

We didn't expect him to make it past Christmas, and we are so grateful and also amazed. He is still losing weight, is on a good amount of continuous pain meds...a subcutaneous Fentanyl pump getting 75 mcg/hour. He changes demeanor and capabilities by the moment now and is having more frequent episodes of high anxiety where you can't reason with him. The doctors and nurses at hospice speak very highly of the care we give him, and some have told me personally they would hope for someone like me to advocate for them if they were ever in Gary's condition. That really makes me feel like the hard work and stress are truly necessary and appreciated. I am so thankful we've been able to keep him home all this time and I could never do that without Hospice at this point. Don't mind saying we are all tired and worn down a bit, but the precious moments we get with Gary are priceless.

He wouldn't still be here if he weren't home. He tracks and wants to know who's coming when each day and when each of us will be home. Have to repeat it sometimes, but he's still the Dad and husband watching over his flock in that way. He is hallucinating more and now they are full-sized people (were always miniature people before). Saw his Mom last week. First time he mentioned her since this all started and he told our caregiver, not us, so I know that was very real to him.

He has to be under 110 lbs. now from his November starting point of a healthy 186. His dominant right arm bicep measurement is down to 24cm from a previous measurement of 26.5cm on his 6' frame. So thin and frail looking, but he can still be surprisingly strong.