In my blog post of April 26, I alluded to some severe agitation issues we’re dealing with.
It hasn’t gotten any better, in fact, it’s gotten worse. Much worse. But first I need to back up to provide background.
Last fall, when we saw his neurologist, I had a list of behaviors that ranged from annoying to disturbing, and a couple of scary, violent episodes. We discussed them, and she asked if she could refer Bill to a research team investigating drugs for agitation and aggression. Of course I consented.
He was accepted into the trial, which was looking into the efficacy of low-dose lithium in Alzheimer’s patients with agitation and aggression. Lithium, a mood stabilizer, has been prescribed off-label for agitation and aggression for some time. (Researchers are also studying if lithium works for Alzheimer’s itself.) The purpose of this study is to determine its effectiveness with the intention of asking the FDA to approve its use in this population of patients. It’s a randomized, double-blind, placebo-controlled study, so neither the researchers nor us would know whether Bill was on the placebo or the lithium, but by the third week I suspected he was taking the drug.
We saw the research team every two weeks for four months. Bill’s blood was drawn, and we were both interviewed. In my interviews, if I had observed certain behaviors, I had to also rate how much that affected me.
What a concept–a study that looks at caregiver response.
By the time the trial was finished, Bill was a pussycat with a few sporadic outbursts that lasted seconds instead of minutes. It was a huge change.
The next step in the trial was a referral to a geriatric psychiatrist, who would “unblind” the study. If Bill was on the lithium, and we wanted to continue it, we could do so at that point. As I suspected, he was taking the lithium, and we elected to continue. This doctor would monitor him for three months, then we could elect to continue seeing him, or being referred to a geriatric psychiatrist in Denton. We’ve elected to continue seeing this doctor, who is very knowledgeable and quite personable.
The agitation increased after about six weeks, so the doctor increased the lithium dose to three times a day. But the problems continued to escalate.
Late one recent Saturday night I was banging on the neighbor’s door after running out of the house barefooted and without my phone or glasses. The hostility and rage would come on suddenly and usually end just as quickly.
We saw his psychiatrist on May 1 to adjust his meds. The doctor added one drug, Seroquel, which is frequently prescribed for aggression and psychosis in dementia patients. There is a “black box” warning, but Bill is extremely healthy for his age, and the doctor has prescribed it often in these situations with no problems. I also know many folks whose loved ones are taking it with no problems. We decided the risk was worth it since I’ve been getting beat up and thrown around recently.
Yes, kind, gentle, polite Bill Bufkins, has gotten violent. I’ve been shoved over a sofa and into the wall several times, dragged out of bed by one arm, thrown onto the floor, kicked, had things thrown at me, grabbed by the arms and pulled out of a room, hit with a leather belt, and most recently, hit below the knee with a broom handle. He’s never hit me in the face (yet), but has raised his fist, thought about it, and lowered it.
Ted, the friend who stays with Bill and helps me out, had his glasses broken when Bill sucker-punched him after telling him he didn’t like his shoes. Bill also nearly hit him with a large plate after claiming somebody left it where it was (it was Bill’s plate). He’s thrown things and been verbally abusive, too.
Early on, I could point to something that may have triggered one of these incidents, which happened only late at night. I adjusted the way I approached things, and we’d have peace for a week or two before another blowup. But lately, the triggers are harder to identify.
Food he doesn’t like, even the looks of it. Washing dishes. Getting caught trying to pee in the laundry room or a litter box. Taking a shower. Changing clothes. Brushing his teeth. And sometimes nothing at all.
He has no idea who I am despite signs around the house reminding him. When one of these episodes occurs he is usually shouting “GET AWAY FROM ME” even though he is the aggressor. He’s demanded I leave the house.
Most of the time, 30 seconds later he’s back to his old sweet self.
Experts still aren’t sure why some patients with dementia become violent, but it could be due to physical discomfort, or frustration at their inability to communicate their needs. They may be angry at being dependent, and the only way to express it is to lash out. Some people compare it to toddler tantrums, except in this case the toddler is six feet tall and weighs about 160 pounds.
So, after gradually increasing agitation, the doctor added Seroquel to Bill’s daily drug cocktail, beginning with a very low dose at bedtime, and 1/2 to 1 tab up to 2 times a day. He also increased the dosage of one drug he was already taking and changed the time of day he takes another. We kept the lithium dosage the same.
Things went well for about 24 hours. Then Bill started brooding again, shifting his jaw around much like a horse chomping on its bit. Brooding usually leads to an outburst, and for several days the outbursts were largely verbal.
Last Saturday morning Bill refused to take his meds. He was angry, but I managed to calmly convince him it was good for him. I took my morning meds with him. He seemed fine, but then things got nasty later when I noticed he had taken off his pants and put them back on inside-out. That usually means he’s wearing no underwear.
I took him into the bedroom and asked him to remove his pants so he could put on underwear, and I’d turn them inside out. He refused. I tried a couple of reasons, and reminded him I’m his wife and have seen him naked. He threw the underpants across the room and lunged at me. I ran, but he caught me. Eventually he pulled me into the living room. He shoved me so hard onto the back of the sofa that it knocked the breath out of me. Somehow, after a nasty wrestling match, I got away from him and called 911.
Denton PD arrived very quickly, but by then Bill was his charming self, although he had put on the underwear OVER his pants. The two officers were clearly trained in these sorts of issues, and both said they had family experience with Alzheimer’s. They really couldn’t do much, but one officer did teach me a self-defense move for the next time it happened.
The rest of Saturday was pleasant. A friend came over and helped me find a way to lock up all the kitchen knives. We watched the Kentucky Derby, and I cooked a nice dinner, which of course Bill ate half of and then complained that somebody had made a mess of his plate. Bedtime was peaceful.
Sunday morning he resisted taking his meds again–this time angrily. He yelled to get away from him while pushing me out of the room. I got some lemonade and talked him into taking the pills, and he went into the living room to watch TV.
I went into the living room when I heard the office door alarm go off. That room is off-limits for a variety of reasons. I approached him and gently explained that we were getting ready to replace the floor in there (pipe burst), and closed the door, which is at the end of a hallway. He looked at me demonically, yelled “FUCK YOU” and then started moving toward the living room. I followed.
Suddenly he turned, grabbed me by the shoulders and slammed me against the door, yelling “GET AWAY FROM ME, BITCH!” I reminded him that he was attacking me (probably the wrong response, according to all the experts), and if he did it again I’d call the police. He backed off and sat down in the living room with the Sunday paper.
I made a nice breakfast of eggs, hashbrowns, and fresh strawberries, and he seemed to enjoy it. Then he objected to the hashbrowns, saying they looked like a mess. I said I’d eat them and encouraged him to eat the strawberries.
The chomping at the bit started. I should have just dropped it, but I tried again, this time by putting a strawberry on a fork and giving it to him. He exploded, lunged at me, and shoved me backwards over the coffee table.
As frail as he is, he has superhuman strength when he’s in one of these rages.
I decided to give him half a Seroquel, but he looked at it angrily and said “I’m not taking that!”
“IT’S TOO SMALL!”
I explained it was small because I had cut it in half and asked him to take it. He yelled “FUCK YOU” and threw it at me. I picked it up off the coffee table and tried again. (I should have put it in some apple sauce.)
He objected to its size again, demanded I take it, then tried to put it in my mouth. I told him the medicine was not for me, it was only for him, and after a few angry questions or statements he finally threw it across the room and lunged at me, screaming to get away from him and using expletives that would make a drill sergeant blush.
I only had one way out, which was around the back of the love seat. He went the other way and grabbed my arms. I used the maneuver the officer taught me on Saturday, so then he grabbed a broom standing in the corner. He swung it at me and got me, hard, just below the knee. Then he went back to where he was, swinging the broom at Pudge, his favorite cat. She got away, and all the cats hid. He sat down, and I ran to the bedroom to get my phone.
The phone wasn’t there. It was in the kitchen, at the other end of the house.
I ran to the kitchen, grabbed the phone, and went back toward the bedroom dialing 911. He came after me, pulling me by the arm, and I realized he was holding his fork. I screamed “He’s got a fork!” to the 911 operator and she said the police were on their way.
Somehow I got away from him and ran, barefoot, out of the house. I called Ted and left a message (he doesn’t usually come on Sundays). The neighbors weren’t home. Three policemen arrived quickly, in two cars. I explained what happened, told them I’d filed a police report about 24 hours earlier, and they huddled. We discussed options, and I explained our financial situation means he’s got to be at home. I also described the medicine changes. These guys were amazingly knowledgeable about this stuff, but then, it is a college town. One called the supervisor and returned to tell us that the best thing to do was take him to jail.
They instructed me to get his medicines and stay in the bedroom. They talked to Bill. He didn’t know his name, and couldn’t answer any questions. He was smiling and engaging, but the police had photographed my scrapes and bruises, so they knew I wasn’t bluffing.
I heard one of them say “This is the worst case of Alzheimer’s I’ve ever seen.”
We went outside and they said jail would be the wrong place for him. Their empathy and concern for both of us was amazing. They insisted I wasn’t safe in the house with him, and I agreed. One called the supervisor again. They called Adult Protective Services (more on that in another blog) and Denton County MHMR. At one point they asked if I’d go to a women’s shelter while somebody stayed with him. I declined. They all expressed frustration that APS and MHMR had no real ideas about what to do with him. There are no government services to help people like us, other than the VA, and Bill’s not a veteran.
I texted my friend Rhonda, who lives a few blocks away, and she arrived within seconds to keep me company while they figured out what to do. Another officer and their supervisor arrived (we now had four officers and a sergeant in the yard). Ted called back and offered to come over, maybe even accompany Bill to wherever they took him. He didn’t have his car, so Rhonda went to get him on the north side of town where he was spending the day with friends. By the time they returned we had decided to take Bill to the hospital for a psychiatric evaluation.
Bill was calm and smiled when they asked him to take a ride with them. They were so kind and respectful of his dignity. I, on the other hand, was a mess.
When he started getting into the back seat of the Tahoe (the vehicles Denton PD uses now) he complained that it was too hot. The officer gently explained he would turn the A/C on and it would get cool. He started to sit down and suddenly yelled “Why do I have to do this?” There was no scuffle, but he stiffened up and it was hard to get him belted in, but they were very gentle and patient with him.
A couple of the officers advised me that I shouldn’t go to the hospital immediately. They recommended I wait until Monday to visit. They took his IDs and his meds, as well as the phone number of his psychiatrist. Before they left the sergeant said “I can’t believe there isn’t anything out there to help you, but we’re gonna try.”
Rhonda, Ted and I went into the house and collapsed on the sofa. I can’t describe my feelings at that point. There are no words. I was blank, and I was paralyzed. Every fiber of my body ached, but my heart ached the most.
I got through the rest of the day, making phone calls and texting with friends, one of whom brought dinner over. I went to bed early and slept like a log for the first time in months.
I’ll talk about the hospital stuff later. But early Monday afternoon, a detective from the police department called to see how I was doing. He also explained that they weren’t charging him, and they were as frustrated as I am at the lack of affordable or government services to help those of us in the middle: Not rich enough to afford memory care, and not poor enough to qualify for Medicaid.
But the fact that the lieutenant asked me how I was doing made my day, and gave me another reason to love living in Denton, TX.
Just another day in Alzheimer’s World.
Note about insurance: There are many common misconceptions about what Medicare and Medicaid cover. Medicare (federal health insurance for people 65 and older as well as those on SS disability) does not pay for memory care or nursing homes. Medicaid (a federal/state program for low-income people, including children, families and the elderly) does pay for nursing homes. Benefits and qualifications vary from state to state, but in Texas people qualifying for Medicaid must have total assets of about $2,200.
Note about clinical trials: I now only consider participating in research trials (drug or otherwise) that are done in an academic institution. Universities and medical schools have strict guidelines to follow protecting the safety of the research participants and the integrity of the research. Drug trials done by manufacturers are a different animal. Sometimes they are administered by private physicians out in the community, and the controls aren’t as strict. The physicians are sometimes paid by the drug company based on the number of participants, and there is the temptation to fudge the records to enroll more people. This happened to Bill 3 years ago, and when I realized he did not qualify to be in the trial, we dropped out. I didn’t want to skew the research results, and I didn’t want to expose Bill to a drug he didn’t need. There’s big money in pharmaceuticals and unscrupulous physicians can take advantage of it–and the patients. I stick with medical school studies.